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diagnosed with UCTD, small fiber peripheral neuropathy

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Posted 8/27/2009 11:30 PM (GMT 0)
Hi, I am new to this forum. I am 26 and I was diagnosed with UCTD in April and small fiber peripheral neuropathy. I am taking Plaquenil 200 mg bid, Gabapentin (Neurontin) 400 mg tid, Ultram (Tramadol) 50 mg tid, vitamin D weekly supplements, omega-3 supplements, multivitamin, and Allegra D 24 hr. I see a lupus and sjogren's specialist at University of Chicago. But she does not really give me any information. She doesn't really answer my questions either. She just feels my joints :( But my husband works at the UofC hospital, and she is the only lupus specialist, so I can't switch. Sometimes I feel like when I tell her my symptoms she just nods and pats me on the back, and still says I have UCTD. Its so frustrating! That's why I want to become a doctor--so I can be a little more empathetic and caring so the patient isn't so frustrated and lonely.
I have had joint pain in my knees, ankles, and wrists since 2002, and it has gotten much worse in the past few months. I have been working full time at a neurology clinic for 4 years, and now I have gone back to get my remaining pre-med requirements so I can go to med school. I am trying to take biology, chemistry and 2 labs in just 2 days a week so I can work 3 days a week and pay my mortgage and bills.
My question is, does anyone have any advice on how to work/go to college with joint pain, neuropathy (burning) pain especially at the wrists (impossible to do homework!), fatigue, muscle pain and spasms, dryness, etc.
My neurologist who diagnosed the small fiber neuropathy said this is suggestive that my UCTD is actually sjogren's or SLE. I do have sicca symptoms in addition to my arthralgias, fatigue, etc. I do not have a malar rash, however I have always hated going into the sun (I burn like a lobster!).
If anyone has advice on coping at work, school, and home (it hurts to clean, and I like my house to look like it is still new--I usually clean once a week). I am having so much burning pain and joint pain, and my fatigue makes me want to just sleep all the time.
I do feel about 50% better compared to before I began my meds in April. The vitamin D especially has helped my fatigue.
Also, if anyone out there has small fiber neuropathy, please let me know. It is much less common than large fiber neuropathy, so its hard to find info. It had also been cause autonomic nervous system problems for me like IBS/ gastro problems, hemorroids, dizziness/lightheadedness, drop in BP when I stand up, etc.
Thank you!
Posted 8/28/2009 3:05 PM (GMT 0)
Pre-med,

I had never heard of small fiber peripheral neuropathy, so I looked it up and have to say that it sounds pretty miserable. But to address your question of how to cope at work, school, and home, my advice to you is to slow down. I too like for my house to be perfect but during the past five years, since I was diagnosed with SLE, I've learned to let the small things slide. Rather than cleaning your house all at once every week, you might try spending 15 or 20 min. each day focusing on one room, or one task so that you don't wear yourself out.

You have taken on quite a heavy load, even for a healthy person. Is it necessary to risk your health in order to rush through med school? That's something only you can answer, but it's my strong belief that for those of us with AI diseases, rest is very important. So is stress avoidance.

I used to be very driven, successful, and a boorish perfectionist. My disease has caused me to slow down and become less focused on goals and more focused on today. I strive to have the best quality of life, and that means listening to my body (and I'm a perfectionist about that) and slowing down when it tells me to, or lying down when I know I must. It has been hard for me to learn to do this and especially to learn to be happy with this, but the upside is that I've learned to be more in the present, and as I've let myself mellow, my relationships have even improved as I expect less of others. Part of this might be a part of the aging process as I'm 60, but for me this has helped me heal physically and mentally.

We all handle our diseases differently and I'm only sharing my experience. But is it possible to lighten your work load at school? I sometimes get so angry at my disease because it prevents me from having as full a life as I used to have, but my anger doesn't accomplish anything so I try so hard to accept that this is my life and I must do everything I can to make the best of it. I suspect you are much younger than I and that must make this whole situation even more difficult.

If it sounds like I'm preaching, forgive me. I'm really preaching to myself.

It sounds like you're going to be a wonderful doctor. I'm sorry you feel so bad but it's obvious that you're doing your homework and learning about you medical condition. Finding the right combination of meds can be a long road but well worth the effort and I'm happy you're having success.

Hang in there. I hope you'll join us here.

Pat
Posted 8/28/2009 4:48 PM (GMT 0)
Premed,

You already got some good advice about slowing down.  Most of us have had to define a "new normal" for our life.  Once you get things under control you might be able to deal with the work, home and school load you have.

Have you considered getting a second opinion at a different hospital?  Northwestern has an excellent rheumatology department and they specialize in lupus and other AI diseases as well as conduct research.  I would recommend Dr. Eric Ruderman.  Might be worth a visit.  I went to Dr Walter Barr who unfortunately passed away last year but Dr Ruderman is an excellent doctor and seems willing to answer all questions. 

By the way I have MCTD and am very familiar with the challenges of overlapping connective tissue diseases.

Good luck and hope you feel better.

Bill

Posted 8/28/2009 8:11 PM (GMT 0)

Hi Pat,

Thanks so much for writing back to me. Sometimes I just feel so alone and I want to cry cause no one understands how I feel and what my disease is. It is so frustrating to have a UCTD diagnosis. There is very little information available about it, and there are no support groups or foundations, etc like there are for the defined connective tissue diseases like SLE, sjogren's, RA, etc.

I understand what you are saying about slowing down, and I have been slowing down as much as possible. Unfortunately I can't adjust my schedule at school without making it take several more years. I am already 26 yrs old, and by the time I start med school (at my current pace of finishing my requirements) I'll be 29. I have already signed up with the college's disability office to get some special accommodations, but no accommodation can make it easier to study and physically get through the day.

I try to take it easy physically at work and school. Since I'm now only at work 3 days a week instead of 5 days, I was able to promote one of our younger staff members to be my assistant, which has helped tremendously. I am a project manager at our neurology clinic, but I am also the only one with computer repair/ troubleshooting savvy. So at least now I can have my assistant do the crawling under the desks, and plugging the computer cords, etc because that always hurt my knees and ankles and elbows a lot.

I will try to take your advice about housework. I have been trying to split it up more, but I will make a better effort to do less each day. I try to do the laundry during the week, so I have less to do on the weekend. I have also been delegating things like cleaning the bathtub to my husband. Cleaning the bathtub gives me back pain that lasts for days (I have a bulging disk at L5-S1). My husband always says he wants to help, but when I ask him for help he always says he will do it "in a little while" which means hours from now. So sometimes I just do it myself cause I get tired of waiting and I want to be done so I can rest.

But I hear what you are saying. I am already much less of a perfectionist compared to my younger days.

--Does anyone have advice about how to study/ do homework, etc with CTD and neuropathy? My doctors have not given me any advice, and I don't have anyone else to ask.

--Does anyone have any advice about small fiber neuropathy? Now that I have been diagnosed with small fiber neuropathy, I am wondering if that narrows down the possibilities of which CTD I have. I am sure I do NOT have RA. Apparently small fiber neuropathy is more common in sjogren's and also seen in SLE.

--Are there other UCTD patients out there? I would love to talk to a UCTD patient who is going through the same issues of having a "non" diagnosis...

Pat, thanks so much for your advice! Take care and I hope you are doing ok. I know how you feel, and I will definitely try to slow down as much as I can!

Take care everyone!

Posted 8/28/2009 8:22 PM (GMT 0)
Hi Bill,
Thanks for writing back. I am so glad I decided to join this group. I have read a few forum pages over the past few months to try to figure out my own Dx but I was reluctant to join cause as a UCTD patient its hard to know where I fit in.

Are you also in Chicago? I would love to go to see the Rheumatologist at Northwestern, but I have to receive all my medical services at University of Chicago. Which is not a bad thing, they do have great doctors of course. My husband works (in medical research) at the University of Chicago, so we have University of Chicago health insurance. Therefore I can only see doctors from University of Chicago.

Do you think I should try to talk to my doctor more forcefully? Sometimes I consider it, because I am so frustrated by having such a "non" diagnosis. I was sure that being diagnosed this month with small fiber neuropathy would change my CTD diagnosis to something more defined like sjogren's or SLE. I asked my rheum if I could have a lip biopsy to test for sjogren's since I have small fiber neuropathy, but all my antibodies were negative (ANA is positive). She said we should just wait a year or so because if we did one and it was negative too we'd just have to redo the biopsy in a year anyway. I had all my labs drawn in April, and they have not rechecked them. I find this suprising because I think that your antibody levels change frequently, so now I might have a positive result even though before it was negative.
--Does anyone have advice about how to deal with a doc who is resistant to run tests?
I feel like it is because I have this university employee health insurance plan. (I do not have to pay anything for any tests--which is great for me, and such a blessing--but because the hospital just "writes off" my test bills, I feel like they don't want to run tests.)

Thanks for writing, Bill. If my husband ever switches jobs I will definitely go to Northwestern and see the rheumatologist you recommended. Take care!
Posted 8/28/2009 8:44 PM (GMT 0)
Hi Pre Med,

Welcome to the forum. I was initially diagnosed with UCTD. My rheumy now believes
I possibly have Mixed Connective Tissue Disease.

It takes a lot of courage to live with our illnesses. Believing in yourself is so important.
A positive attitude goes along way in helping deal with the day to day issues.

You really have a busy schedule. Hoping you are careful not to overdue.
Schedule time for relaxation. Keeping the stress level low really helps. I know when
my stress is up my pain is more intense.

I believe you will be a great doctor because you understand pain.

Patty and Bill gave you great advice. I just wanted to welcome you and let you
know that we understand it isn't easy. Take one day at a time. Attitude is everything!

Keep us posted

Robin
Posted 8/28/2009 9:03 PM (GMT 0)
Premed,

I live in Wheaton.  Most of my care was from doctors in Naperville at Edward Hospital and then at Marianjoy Rehab Hospital.  Dr Barr at Northwestern consulted on my case and I became a patient later on.  He passed away last year and I will see Dr Ruderman annually in addition to my local doctors.  I see my local rheumy every 3 months and run labs to see if everything is OK.  My case is probably in remission but I have problems with meds and hope to be off all controlling meds soon.

Keep in mind that UCTD is less a diagnosis than a transitory state.  It is the name given when the doctor has enough symptoms to suspect a CTD but cannot diagnose it yet.  Some cases never fully develop but most morph into a more concrete diagnosis over time.  Understanding AI diseases is different from understanding most other diseases.  UCTD is used when a patient has a variety of symptoms indicating a connective tissue disorder but nothing can be confirmed by labs, etc.  Frustrating but most of us went through a period of diagnosis uncertainty or even hell.  It took about 13 months to get a positive diagnosis in my case although the doctors pretty much figured out that first I had lupus and later MCTD (lupus, scleroderma and polymyositis).

It is not that unusual for lupus, CTD, or myositis patients to not have a firm diagnosis...sometimes for months or even years.  Just the nature of the disease but sometimes it is due to the inexperience of the docs.  Probably not in your case.  Until your symptoms develop the lab tests are probably going to be a waste.  Many with lupus and other AI diseases can be very sick but have negative labs so labs are only a part of the diagnostic process.  The most important are your symptoms and how you feel.

I had 2 telltale labs (mild anemia and low platelets) for at least 15 years before becoming symptomatic and was not sick, ever.  My internist would monitor me with labs annually and nothing changed until 2004 when my platelets dropped even more.  He sent me to a hematologist who eliminated everything over a 9 month period but speculated that I might have lupus.  2 months later I became symptomatic and my rheumy thought I had MCTD but it took about 3 more months before labs and symptoms confirmed that.  My diagnosis was difficult even with a team of experienced and very dedicated docs who were talking to each other.

When you see your doctor again I would prepare a written list of questions....all of them and ask each and every one of them.  When I first saw a doctor at Northwestern ( this was almost a year after getting sick) I had a list of 26 questions.  He answered every one of them.  It seemed that even though I had been through hell and back I had even more questions than ever.  Many of which I already knew the answer but Dr Barr was a world class clinical researcher and highly knowledgeable and respected.  You will learn that you have to be your own advocate and take control of your care...don't be embarrassed or passive about it.

My case was extreme and I spent many months in hospitals.  Lost 40 lbs of muscle in a week and was completely crippled and could not swallow anything.  No one expected me to walk or swallow again and I had internal organ problems and many complications.  Today I am active and play golf (walk the course), play tai chi, ski, hike......pretty active for an old guy 66. 

Most cases are not as extreme.  All the docs said they had never had or read about anything like mine.  Most are relatively mild and can be controlled by meds.  I don't know anything about your neuropathy so I won't try to comment.  I had lots of pain but it was mostly in joints and muscles.

http://emedicine.medscape.com/article/335815-overview

http://emedicine.medscape.com/article/334482-overview

http://www.patient.co.uk/showdoc/40001176/

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

The links above might help you better understand the mysterious problem you have.  They won't provide definite answers but should help you to understand it better.  The fact is that all of us live with a certain amount of uncertainty when we have an AI disease, diagnosed or not.

Hope this helps you understand things better.  Feel free to ask more questions.  I participate in a lupus support group and also help run a myositis support group and there are others who have MCTD.  The Lupus Foundation of America has a support groups in Chicago.  You might look into that.

http://www.lupus.org/webmodules/webarticlesnet/templates/illinois_support.aspx?articleid=864&zoneid=108

Bill

Posted 8/28/2009 9:20 PM (GMT 0)
Dear Robin,
I appreciate your message. Its nice to know I'm not the only one out there with UCTD. I guess we are lucky that we are on the less severe side of the CTD patients.

I will take your recommendation on trying to schedule more time for relaxing. Luckily I am a pretty easy going person and very few things upset me or stress me out. So that is a blessing. Obviously the pain upsets me of course, but other people, etc don't stress me out and my job and homelife are not stressful. I just started school this week, and it is somewhat stressful, but I think I can handle it :)

I will try to be more courageous! What I really find hard is not having someone around who understands. When you don't "look" sick, no one thinks you are. Its hard to make people understand that its not in your head.

I really hope I will be a great doctor. I have been working very closely with doctors for 6 years, and this past year has provided me with the patient's perspective (which is so different from the doctor's perspective!). It is so important for a doctor to be sympathetic and caring. Our medical system just wears out the doctors though; doctors get so tired from being overworked and then they are less sympathetic. Plus I feel like in my case, my rheumatologist sees so many CTD patients that are much sicker than I am, so she sort of brushes me off.

Thanks for writing, Robin, and I will keep taking it one day at a time. I am happy to know that I am not alone. I feel much better emotionally than before I made my first post yesterday!
Thank you everyone...
Posted 8/28/2009 11:28 PM (GMT 0)
Hi there

I'd like to suggest you stop worrying about your exact diagnosis since it really isn't worth it. The main thing initally is to get a correct diagnosis of an autoimmune connective tissue disease. They are nearly all treated basically the same way as far as disease modifying medicines go, with particular symptoms treated as necessary. That's autoimmune as opposed to other sorts of connective tissue disease whether due to infection, congenital, wear and tear or injury or completely different diseases with some very similar symptoms and needing very different basic treatment.

The criteria lists were meant as descriptions or classifications of what doctors agree they are going to call a particular set of symptoms. They were not meant for diagnosis although they provide a useful guideline of what is typical. These labels are useful for easy reference, for statistics and for whom to include in drug trials and other sorts of research. We are used to thinking of diseases as quite separate distinct entities. Measles is measles, mumps is mumps but with complicated diseases it rapidly becomes more complicated as one might expect. Sometimes cases are clear cut and fit neatly into a particular labelled box, they are classic cases of lupus or whatever.

Then it's important to make sure there isn't a component of presentation caused by another different disease of some sort. So there's the exclusion factor too. MS and some sorts of lupus or APS can have very similar symptoms as can Lyme disease and lupus. Even the experts might sometimes have great difficuty sorting it out and some people can have both which can pose serious treatment dilemmas. There are very many untypical cases. The criteria can only be guidelines and diagnosis depends ultimatley on an experienced clinician's clinical judgement

UCTD is a definite diagnosis - it means there is no specific sign of any distinct CTD. In the case of lupus that means no anti-ds DNA or anti Sm antibodies and no skin or kidney disease proven by biopsy to be lupus related. I am sure that many doctors would simply diagnose SLE usually with the term 'mild' attached meaning no organ involvement.

It's a blessing not to have an SLE diagnosis because it makes insurances almost impossible to obtain except at unaffordable premiums and may well pose employment difficulties even if it shouldn't.

To show how meaningless and vague the term SLE can be in reality, technically I qualify for an SLE diagnosis: I have biopsy proven lupus skin and another weighty criterion, the anti Ro antibodies. Apart from that I have ANA antibodies but never more than 1:320, painful joints and photosensitivity plus extreme fatigue that isn't due to anything else like thyroid or anemia. No organ involvement of any sort, not even bouts of pleurisy or frequent infections. I do have sicca, the anti Ro antibodies and insignificant forms of vasculitis but I'm not diagnosed with Sjogren'snor do I need to be. Topical treatments for dry eyes and management of dry mouth is all that's indicted for those symptoms and my lupus drugs work on whatever Sjogren's symptoms I might have. I once had a very zealous doctor who wanted to do a lip biopsy as part of his research into Sjogren's criteria which is in fact somewhat controversial. Luckily I knew enough by that time to realise that it served only his academic interest and would not benefit me in any way and had an element of risk not to say discomfort.
I have been married 43 years now to a good loving easy going man. I haven't needed much help with the house but now he is retired it is only fair that he assumes his fair share of the chores. He is awful about doing his share in a timely fashion and could drive me crazy that way - if I let him. It's not even deliberate, he just forgets and needs organising and reminding. We have come to a clear agreement about exactly what he's going to be responsible for and when it needs to be done. It is written down so there's no dispute. Choose your battles, do all you can to avoid them and don't expect perfection from yourself or others. Prioritise, prioritise, prioritise.

Make sure you fully describe how your disease affects your everyday life and keep a pain journal rating pain levels from 1 -10. Let's hope she will be responsive to your needs.

Good luck
BB
Posted 8/29/2009 12:33 AM (GMT 0)
Finally someone here in the states wanting to become a doctor.  I keep wondering why aren't the young people becoming doctors.  I wish you all the best and pray your journey will be free of obstacles.  I was preparing for physician school when I became sick with RA.  However, also had a small child regressing and losing her fine motor skills.  I stopped school, but regret it often because now that I finally understand you can't wait on the disease to calm down to live, go to school, get married or have kids, etc,  a lot has passed me by.  I kept thinking I have to get control of this disease first.  but no just take smaller steps but by all means follow your dreams.  we could use someone who knows what it is like and not what the textbooks say it is like in the medical field as doctors. please post about your progress.

half the battle is finding the right doctor because that doctor will make sure he/she won't rest until  a therapy that makes life enjoyable for you is found and hopefully get you into remission in the process.  I believe that is their goal or at least they used to talk about remission to me. It never happened for me unfortunately but instead sjogren symptoms appeared and in the last  1-1/2 to 2 years lupus symptoms. some raynaud's here and there but none recently.  so there is no magic pill or treatment.  it is all trial and error which is where having a good doctor comes in. 

You will have to do your part getting enough rest.  change your whole attitude towards stress.  enduring stress does not make you wonder woman, but a very sick woman.  avoid it like the plague. get enough rest.  did i mention getting enough rest?  It is extremely important.  because there will be good days and bad days.  in time hopefully more good than bad. 

Stay active with low-impact activities like swimming, also do your stretches every day, maybe get into yoga, not the kind where you end up like a human pretzel. or tai chi would be good for the type stretching I am talking about.  for me warm baths with espon salt helped but that was for the soreness from RA.   pace yourself, try not to over do it on the days when you are feeling well.   maybe go to school 1/2 time for awhile and when you find the right therapy and regimen for you bump it up to almost full-time. you know you and your body will let you know what's too much so just pace yourself.

and with med school being the stressful place that it is you want to start finding ways for de-stressing. 

nerve pain is tough.  I have heard fibro patients talk about nerve pain and taking neurontin.  for me, it has not been frequent enough to go on specific meds for it.  I get shooting pain in my feet and muscle pain from time to time.  the main players in my case are RA, sjogren, and lupus. ....but things like that your doctor should be taking care of.

I am so excited you want to go into medicine.  I am trying to tell you everything in one post but will tell you more as you post more questions. should follow my own advice and not overdo it.:)  best of luck to you. take care.

 

Posted 8/30/2009 5:25 PM (GMT 0)
Dear Bill,
Thanks for all the informative links. I read through them today. I had read the UCTD link a few months ago, but it was helpful to read it again for the small details. I am vitamin D deficient, and now taking prescription supplements, and the article you sent said that often helps the progression of the disease, so I am happy about that.
I'm so sorry to hear what a severe case of MCTD you've had. I can't hope to understand all the pain and discomfort you've experienced. I know that compared to most of the people in this group, I am so lucky. That's why I didn't join a group for so long--cause I didn't know which group I fit in with. Thank you to all of you for writing to me and providing such sage advice. I really felt like I had no one else to turn to.
Like you suggested, I do go to the doctor with a list of questions. With all my other doctors I have no problem being my own advocate. I am always encouraging others to take a stand for their own interest when at the doctor. However, something happens to me when I go to the rheumatologist. Its a combination of factors I think. Unlike my other conditions (bulging disk L5-S1, severe allergies and ENT problems, small fiber neuropathy, autonomic nervous system damage), the AI is what really is an emotional issue to me. When I go see my rheumatologist I just choke up and I feel like I can't really talk. I guess I'm just afraid of what is going to happen to me. Plus I feel like when I talk about my symptoms they are just brushing me off (my rheumatologist attending, and her fellow that school year). Maybe its because all these symptoms that seem "significant" to me because they are causing me pain, are still within the realm of UCTD symptoms and therefore are not of diagnostic significance to them.
--So here's a question for everyone--how often should they re-run your labs? Its been 6 months since I had my first and only lab work done. My ANA was in February, and my other antibodies were run on April 6.
Thanks, Bill, for your kind and informative message. Take care!
Posted 8/30/2009 5:50 PM (GMT 0)
Dear BB,
I know that it really doesn't matter from a treatment perspective which CTD you have, but I guess the reason I feel so restless about the UCTD diagnosis is that I can't really tell people that I have UCTD cause no one understands. I end up blabbering something like, "I have an autoimmune CTD, and its like a pre- or less severe form of lupus or something similar. And because of it I also have neuropathy in my arms and legs, and sometimes the back of head is numb, and my other nerves are damaged..." Its just frustrating not to be able to explain it. I just feel like because the term is so vague people don't understand why it makes me so achy and fatigued. Sometimes I just say I have something like arthritis.
But I understand what you mean about different rheumatologists might label it differently. And you are right that from a health insurance perspective it is preferable to have an UCTD diagnosis.
I hope that I am lucky like you and don't get any organ involvement. Do you have any neuropathy or burning pain? I am just curious how your disease progressed.
It seems we are both very blessed to have nice and caring husbands. I try not to get upset when he doesn't help with things in a timely manner. The housework wouldn't be so painful for me if it was just joint pain--but my wrists, arms and legs' burning pain worsens with any kind of activity. My neurontin helps but is doesn't take it away. Unfortunately I can't really increase the dosage cause it is already causing a brain foggy/ concentration problem at the current dose. For the same reason I have to do all my school work on the computer. Moving my wrist in a circular motion to write things by hand is so much more painful than typing surprisingly.
In the beginning I kept a pain journal, but I noticed that nothing really changed. When I do certain activities I get pain every time. Do you keep you journal for your own record or to show your rheumatologist?
I have a question for you about your dry mouth and eyes: no matter how much fluids I drink, my mouth always feels dry. Is that how it started for you? I can eat without drinking if I need to, however. I have been having trouble wearing my (gas and water permeable) contacts for a few months now. Did it start like that for you? I am always feeling like there is something in the corners of my eyes, and I am always trying to "get it out" but there is nothing but a thick mucus type substance. Also my skin has been very dry for a year, and in the past it was always very oily and I NEVER used body lotion. And I have been getting nosebleeds the past few weeks.
I just want to know what you think about those symptoms, cause I don't know if that is just the start of sicca symptoms or what. Its so hard to tell from reading the clinical info online. My neurologist (she is an subspecialist in autoimmune neuropathy) and the other small fiber neuropathy specialist who did my skin biopsy said that because I have small fiber (not large fiber) neuropathy, that is most common in Sjogren's and sometimes in SLE or RA.
Thanks, BB. Please let me know your opinion re: the sicca symptoms. Thanks again!
Posted 8/30/2009 6:30 PM (GMT 0)
hello Southpaw--
Thanks for your encouragement about medical school. For the past 3 years I had thought a lot about becoming a doctor but I didn't know how to go about it since I already had a BA degree in another subject, and I felt it was too late for me to go back to school. However my experiences with doctors in the last year, mostly negative, have convinced me to become a doctor who cares and thinks outside their own specialty to truly diagnose the problem. Starting last August when I developed severe knee pain and ankle pain, I was misdiagnosed by an orthopaedic doc, then told all I could do was PT. I did PT and didn't get better. So I did nothing for months. I was having such bad pain in both knees and ankles, it hurt so bad to drive that I would cry on my way to work. So in January I asked my PCP to send me to therapy again. After a few weeks of PT, my therapist actually asking me if I was faking it, cause I had full range of motion, and I had joint pain, along with muscle pain and burning pain that came and went. My MRIs of the knee were normal. I was so devastated. I couldn't believe she thought I was lying about my pain. I asked my PCP to refer me to another ortho doc. She was such a nice and caring doctor, so unlike the first ortho doc who just looked at my MRI of the knee and diagnosed me with runners knee (I don't run!!) without running further tests. She ordered a whole range of labs, and a MRI of my lumbar spine and found my bulging disk which explained my back pain but not my joint pain. She also ordered an ANA which came back positive, and that's how I finally reached rheumatology.
I wish I could find a more caring doctor. But due to my POS health insurance (see my note to Bill towards the top of this thread) I'm not sure I can do much about that now.
I usually sleep 8-11 hours a night--more like 7-8 now that I started school last week. I definitely need my sleep otherwise my brain just won't function. I get a headache and much worse body aches if I get less than 7 hours. (I hope I can get some kind of accommodation during my residency. They are supposed to be easing up the Resident's call schedules in the next few years and I pray that it works out. Some of my friends who just graduated from med school and started their first year of residency last month told me that they work a 30-hour shift every 4 days! It seems like such an ill-conceived idea to have sleep deprived doctors caring for inpatients! They should divide that shift into 2 and just have residents do it every 3 days or something... My friends said that on the other days they work 8 am to 6 pm or later, and they only get a day off every 13 days. But it gets easier each year as you become a more senior resident.
Anyways, I do try to do some yoga stretches at home. I would love to try your other suggestions, but since I'm in school I don't really have money for a class. They charge $10 a day to get into the gym, and I think its extra for the classes, like $5 a session in addition. Since I'm a part time student I don't get a gym membership. Plus I think I would be so exhausted by those activities, so I couldn't go on the weekdays cause I wouldn't have time to sleep afterwords. When you do the classes, do they wear you out? I'm just so afraid of being in more pain after...everything physical I do makes my body ache more and my limbs have more burning pain. :( I do have to walk around campus and the office I work at most of the day...and cleaning my townhouse is quite a work out. Especially the stairs that separate me from my kitchen! I feel like I have to go up and down the stairs in my house a million times a day!
I will try to follow your your advise and not overdo it. I am not trying to get into the "best" med school or residency program. I don't want to be super competitive. I went to a really good undergrad school (University of Chicago) but I know that physically I will get worn out if I try to go to med school at a school like that. Plus I do want to have kids during the last year of med school or after med school. Luckily I am hoping to be a neurologist, and the practice I currently work for is a neurology private practice. The doctors there (4 of them) are such great people. I have worked for the owner since 2001. I used to tutor his youngest son. They have told me that when I finish my residency, I definitely have a job waiting for me there if I want it. So I know that when I finish my residency things won't be too stressful.
I will definitely keep you updated on my school situation. Unfortunately I have 3 years until I start med school so I won't have any interesting stories about med school for a while.
In the meantime I'm just trying to get through the physical barriers (fatigue, pain, burning pain) so I can get the A's and the activities/volunteering, etc I need so I can get into med school.
But when I am a doctor, I know I won't fall victim to the greed and over-worked mentality that I've seen make so many doctors rush their patients, and complain about their patients. I hear doctors whine about having to see patients who cry, or talk to much during the appointment. This doctor is perfectly healthy, and I can't help but think that if he had a chronic condition that maybe he'd be a little more compassionate and care about his patients. He's a young doctors just a few years into private practice, and I think he fails to recognize that now that he is in private practice he has no reason to complain. No one is putting him on 30 hour shifts!
I just wish that more doctors would have to spend even a day in the shoes of one of their chronically ill patients. Then perhaps they'd realize what it really means to be a "good" doctor--listening, being empathetic, and taking the time to really think about what someone's symptoms might mean. When a doctor is in the exam room with a patient, they need to let everything else out of their mind and just focus on that patient.
Ok, I think I've written too much. But it is so freeing to be able to speak your mind to people who actually understand you. Thanks everyone for listening.
Posted 8/30/2009 6:45 PM (GMT 0)
If your condition is stable but you are taking controlling meds then every 2-3 months should be sufficient.  When I was in the hospital for 3+ months tests were daily and then weekly when I entered the rehab hospital.  For 6-9 months after that they were monthly, then every other month and now every 3 months.  If I get off imuran this fall I might only see the rheumy every 6 months but I don't know what he will do.

If your condition is not stable and you are having flares then probably monthly. 

Be an advocate but try not worry so much.  I gave that up after nearly dying and everyone thinks I am a little daffy because I really live day to day and try my best to enjoy life.  If I have a problem I face it and move on.  I am more likely to die of old age (I am partly there already) than all the conditions and diseases I have. 

Bill 

Posted 8/30/2009 7:29 PM (GMT 0)
Pre-med,

When I read your statement that you are "already 26", I was reminded of a story my friend Ben shared with me years ago. His wife Pat was a schoolteacher while their kids were young and when they got out of school Ben (an attorney) tried to convince Pat to go to law school. Her response was "but Ben, I'll be 40 when I get out." He came back with "but Pat, you'll be 40 anyway." She went to law school, eventually became a judge, and is now retired. We sometimes get in a hurry with life and think we have to have it all Right Now. It's a lot like my theory about love. When I'm on my death bed I don't think I'll be worrying about "when" I fell in love, but rather "that" I fell in love.

You have a greater chance of a good medical career if you take care of your health than if you wear yourself out trying to get there as fast as possible.

I'm so glad you're here and believe you have a lot to offer to our forum. And I hope you can get the support here that you need. We all have differing diagnoses but we share one thing in common - the diagnosis, or suspected diagnosis of an AI disease. Our problems are similar and we all need the support and understanding we receive in this group of folks who understand what we're going through. The diagnosis limbo is a tough place to be, but don't think you have to explain everything to your friends. Sometimes simpler is better, such as telling people you have an AI disease and your doctors are doing their best to pinpoint exactly which one or ones you have. I used to try to explain what I was going through and after 5 years finally told my step-daughter, an RN, that it felt like having the flu without it being the flu. She finally said, "oh, now I understand. I never quite got why you sometimes didn't go to family dinners...."

Hang in there and take care of yourself.

((((Hugs))))

Pat
Posted 8/31/2009 2:47 PM (GMT 0)

Hi Premed,

You have such a positive attitude.  I think you will be fine.  There is no doubt you have a lot on your plate but in time with the right therapy things will calm down.

I know what you describe with the doctors in a hurry oh too well and I'll bet many others here know also.  I have had to jump in mid sentence many times to make sure I get heard before he rushes out the door.  One lady described her doctor as always having one hand on the door ready to run after the first question.  they just never seem to have enough time.  I had two older doctors in another state who took the time to explain the disease, the lab work and answer any questions you might have.  so I know they are out there somewhere.  Just way too few of them.

I do have many of the symptoms you describe and some with organ involvement in the last 2 years. so know the battle you are fighting.  my hands and wrists look as if i have never taken anything at all and i have taken it all including rituxan, cytoxan, enbrel, remicade, humira, orencia and the list goes on.  I was never treated for the lupus component of the mtcd.  however, it was not on the radar at the time but could be why I never responded to anything for very long and suffered so much joint damage in the wrist and fingers, shoulders, elbows, hips, etc.  lupus can do that as well as RA.  Just do what you can, maybe you can only clean for 15 minutes at a time then rest.  maybe you will only be able to clean one room a day or a week even. maybe just focus on the bathrooms and kitchen taking frequent breaks. maintaing throughout the day instead of an all out cleaning.  recruit help. I know it is diffcult when you are used to doing things yourself.  i am the same way and no one can do it the way I can.  My dh will help clean but don't ask him where he puts things.  it is more like hiding than cleaning so I would really love to do it myself but realize I have to put me first and my health first and means getting help when i need it.

I don't have any classes at the moment.  I signed up for water aerobics a liitle while ago but didn't keep my appts. the pain and fatigue made it difficult.  I have been training to do dialysis from home where they dialyze you in training.  afterwards I am pretty spent. tai chi is on my list of things to do next.  I do stretches in the morning and sometimes will go out in the sun for 5 minutes or less to stretch. can't have too much sun exposure with some of the meds and lupus symptoms. but I notice a big difference in my flexibillity when I stretch.  I had to stop my PT becuase of the dialysis training but will pick that up again next week. I have been searching high and low for PT that involved water therapy.  I am a big fan of water exercises because the body is light in the water.    I don't drive at the moment so fitting some of my ambitious activiities can't always be done and sometimes have to wait until the weekend when I can have help with the driving.

However, I love to learn. It makes me feel alive so I imagine i will always be taking some sort of class here and there.  I am interested in a writing class now and training for something I can do to earn money even if I have to sit in a chair most of the day to do it.  will talk about that here one I get started.  in the meantime I am looking for a medical transcription job because as I said before in a previous post, I was preparing for physician assistant school when i became ill.  I held on to my medical terminology in hopes of returning to it someday but never did so I put it to good use and typed medical reports.  I was able to earn a little money to contribute to the household while caring for my total care daughter.  now that it is just me and dh and i have gotten the training out of the way for dialysis,  I am looking for another transcription job. there are many companies out there to work for but finding the right fit with a flexible schedule takes time.

I take care of my body, I stay active. I try to keep a positive outlook and take it one day at a time.  that's all you can do.  Before illness I did everything fast, walked fast, talked fast, everything fast.  Now, I pace myself.   I laugh as often as I can. Laughter is the world's best medicine as they say and I agree.

Wishing you the very best and hope you are having a comfortable and peaceful day today.  take it easy.  slow and steady wins the race.  

Posted 9/3/2009 4:37 AM (GMT 0)
Hi. I'm 25 and I have Undifferentiated Mixed Connective Tissue Disease and Small Fiber Neuropathy. You may want to check out the Neuropathy Association's website...and become a member...they are a great source of support...you can join a support group in your area...get articles on small fiber neuropathy...and read stories of people who are in similar situations....I have had the intense burning pain all over my entire body for five years now...it is rough! I take Lyrica (600 mg), Ultram (100 mg 2x a day), Cymbalta (it not only works as an antidepressant, but increases the strength of the lyrica), topamax (for the nerve pain) and merinol (for the nerve pain). I also take Synthroid for my thyroid and trazodone to sleep at night. In terms of energy and getting things done, every day is a challenge...but I have learned that stress is my worst enemy and try to avoid it at all costs. I hope you're doing well...and that this message reaches you when you aren't in too much pain. All the best.
Posted 9/3/2009 3:46 PM (GMT 0)

Hi Premed & welcome to the Forum.  I have a UCTD diagnosis and just started treatment with Plaquenil last December.  I also have fibromyalgia, which I've had for more than 10 years, and I did feel kind of "brushed off" like you describe with my rheumy when the other symptoms, which I knew were different than fibro, started up.  My lab results are generally negative for specific AI disease, other than a high positive ANA.  When I have flares, white cell counts go down, CRP is sky high, and my liver enzymes get elevated, but still negative on the specific antibodies. 

My rheumy finally told me she suspected Lupus would show up clinically at some point - my symptoms all point strongly in that direction.  She also suspects Sjogrens.  I've done lots of research, and certainly been helped by the kind folks on this forum, in terms of my own understanding of what's what, and how to cope.  But I understand completely about the frustration and even embarassment of all that other people do not understand about what your daily life is like.  Even family.  My husband gets it - for the most part.  He does more than his fair share too much of the time.  But I would say that most other family and friends may try to understand, but they have no idea, really, and without a "specific label" to toss out that they can comprehend, it's like you always feel as though they're wondering if you aren't just a bit of a hypochondriac, or a whiner or whatever, especially without really looking as sick as you feel.   I think it's one of the hardest aspects of this diagnosis.  I dealt with it for a long time with fibro first - but the CTD the last few years has really been life changing - and I'm still trying to figure out how to cope - it's much harder now. 

I have learned to say "no" when I need to 90%  of the time.  Pushing beyond the "safe margin" for energy output is such a setback that I have gotten much better at being aware of my body.  But it's still a fine balance, and sometimes the body doesn't communicate very well - or you just have no choice - and back you go, paying the piper in hours and days of feeling unwell and unable.

You've had plenty of good advice from others.  I really just wanted to tell you I truly understand being flummoxed by a diagnosis that seems like such a NON diagnosis.   It was good for me to read your posts.   We have to work hard at not wasting energy on trying to make other people understand something that I think you'd really have to "live" to understand.  I remember when I became pregnant with twins.  Prior to that I had believed that "morning sickness" as it was called then, was simply mind over matter.  Ha!  It was my first lesson about the arrogance (and ignorance) of good health.  yeah

You will do the best you can - that is clear from you posts.  Let that be enough.

Lucy

Posted 9/8/2009 12:36 AM (GMT 0)
Hi pre-med
I too am dx with uctd and much like you have been suffering for quite some time (officially 2 years but believe my symptoms started about 10 yrs ago with raynauds when I had mono)

I have unbelievable joint pain (knees, shoulders and hands mainly), mouth sores, vitiligo (dx in 2006), hyperpigmentation, enlarged heart, fatty liver disease, pre-diabetes, enlarged heart, bouts of pleurisy and a lot of GI and lung symptoms. Also have nerve pain but was dx with carpel tunnel so I don't think they believe there is a correlation there but I do. My labs come back normal except elevated liver enzyme GGT and a few times elevated ACE level so I am officially UCTD.

I have had to slow down so much and it really bothers me but it's best. I have to forget housework during the week and just work. I sleep 10 hours a night and struggle with working out but try to.

As for your rhuemy, perhaps you should go to one that is not a lupus specialist and just find one that will take you seriously. I did notice though that you are being given meds. It took me 4 rhuemagologists before I found one that would even dx me with uctd and have just recently been given only one dose of prednisone to "see if it works". So far, I have had no help from my dr's but hope that this new one will begin to help me.

Well, maybe you will feel better knowing there are others with "uctd". I hope you're feeling better

Littleflower70
Posted 9/25/2009 8:28 PM (GMT 0)

OMG, I am so glad I found this thread.  I appear to have many of the similar symptoms as you, pre-med.  I am a 41 year-old male who has been living in chronic muscle/joint pain of unknown origin for close to 13 years.  However, just last year I was diagnosed with persistent Lyme disease (IgG+ Western Blot).  But I knew it was only one piece to this complex puzzle.  I went to a new neurologist today and he STRONGLY suspects I have small fiber neuropathy.  I previously had no idea what it was.  When I told him I started getting facial and abdominal pain immediately after a terrible bout of mononucleosis in 1997, he said that it can be brought on by a viral infection like mono.  It is as if my body still thinks I have mono, and it has been attacking my peripheral nerves all of these years.  I am no doctor, but this theory appears on the surface to have been corroborated by recent bloodwork, which indicated my Epstein-Barr titer was off the charts (over 4000).  My Lyme disease doctor (a Mayo-trained Doctor of Internal Medicine who has been practicing for 43 years) suspects that Lyme had degraded my immune system and made me vulnerable for the EBV.  He said it is also is probably why I had the mono as bad as I had it.  Briefly, here is what I have been diagnosed with so far and my history of disease:

-Small-fiber neuropathy (suspected)

-Chronic Lyme disease (with a co-infection of babesia)

-Fibromyalgia

-Chronic Fatigue Syndrome

-Metabolic Syndrome (pre-diabetic)

-Thyroid disease

-Mononucleosis (1997)

-Mumps (1980)

-Hospitalized for "virus of unknown origin" (1972) - high fever, listlessness, lack of appetite

(My Lyme doctor believes this could well have been when I was initially infected with Lyme, as the symptoms are similar to those at the onset of Lyme.  Lyme wasn't formally recognized by the CDC as an infectious disease until 1973.)

In any event, I feel for everyone who has to live in chronic pain, as I have lived it myself for almost 1/3 of my life.  And what angers me more is that no one can seem to agree on the root underlying cause of the dysfunction or how to treat it, so the patient not only continues to suffer.  But insurance is reluctant to cover what has been deemed by your physician to be "necessary" treatment because of the controversy surrounding the disorders.

Best of luck.


Posted 1/3/2010 7:45 PM (GMT 0)
Hi I just joined and read your post.  Have you ever thought of trying to get outside help.  I also have been diagnosed w/SFN and am in constant pain however I have an i home health aide who comes once a week to help me w/light housekeeping , like changing beds and vacumming and such.  I qualified trough the county adult and senoir sevices since I have a diagnosis.  If you do not have any family or friends who understand the pain or if you don't want to deal w/them seeing your mess ;) it's a better way.  I have also saved up enough money at times to have a cleaning service just come in and clean my bathrooms and kitchen from time to time.  They charge by the hour and a lot of times they are looking for repeat buisness.  Good luck I understand your pain!
Posted 1/7/2010 4:25 PM (GMT 0)
Hi premed!

I am another person "diagnosed" with UCTD.  I was diagnosed almost 9 months ago.  I presented with generalized joint pain, hair loss and severe fatigue.  Nothing came up positive for me except for my ANA (1:320 speckled) and my CRP was high.  No other antibodies came up positive for me.  Thankfully, my doctor prescribed me prednisone to help with my symptoms.  It really did help!  Once she figured out that it was definitely an autoimmune disease of some type, she put me on Plaquenil.  She has been trying to taper down my prednisone ever since then, but I've been unsuccessful getting down to below 4mg.  Since then, I've had other symptoms occur, but never have gotten validation from my rheumy that it's related.  I've had nosebleeds (with normal platelet count), lymphadenopathy, numbness to my hands, severe headaches, and dry eyes and mouth.  I still am without a true diagnosis.  I have found great support in this group and also in a UCTD support group that I found online.  It helped me realize that the diagnosis (although desired by me) isn't truly necessary at this point.  I'm getting the same monitoring and treatment that any lupus patient with my lack of other organ involvement would be getting.  It also helps with insurance purposes.  It has helped me become patient.  Although, like you, I find myself still frustrated at times about lack of definition of what is going on with me, I try to overlook that and just live my life trying to change my lifestyle to help my disease and not get stressed out.  I've definitely realized that the more you stress, the worse you feel and the more symptoms you have.  Although, I'm definitely still learning how to manage my health and this disease.

I'm an RN and I also find difficulty balancing work and my health.  I work 12 hour shifts on my feet all day and I am exhausted afterwards only to find myself having more work to do when I get home.  I'm a single mom of an active 8 year old little girl and tons of housework as well.  I would suggest giving yourself a break.  Live your life and try to find peace and happiness.  If that involves allowing yourself to live a little less perfectly, then do so.  I sometimes beat myself up over the fact that I can't be one of those moms that ALWAYS has fun stuff to do with their child and always has something going on.  I found through this experience that my daughter is just as happy spending time with me at home when I'm not feeling up to par and helping me with whatever she can do around the house as she would be if we were out all weekend busy with tons of plans.  I have to remind myself of this constantly!  I try to do special things with her when I am feeling good and we hang out and play games and watch movies at home when I'm not.  Just reorganizing priorities and how you spend your day will help.

As far as schoolwork is concerned, I'm not sure what to tell you about that.   When I was in nursing school, I would tape lectures and tape myself reading notes from the text.  I was able to write without pain (as I wasn't having symptoms back then) but was a better learner by listening rather than by writing things out.  Not sure how that would help you with tests, but it might help going through studying and lectures.

I'm glad you found this forum!  These wonderful people are a true source of support and knowledge by experience.  Welcome!

Posted 2/19/2010 3:10 AM (GMT 0)
 Hi

I am also new to this forum. I was diagnosed with small fiber neuropathy in 2007. I am 35 now. No one seems to have answers for me yet. My ANA has always been elevated. The doctors think that maybe its the beginning of a connective tissue disorder, but not sure yet. I will be seeing a rheumatologist soon. I hope I get some answers then. It's very hard to cope sometimes when you can't find a reason. I also am dealing with burning and tingling in my feet and hands that have seemed to increase.  Raynauld's with it does not help. I hope you do not give up though and stay determined to finish school. I am sure you will feel better when you accomplish that, especially while dealing with SFN.

Posted 2/20/2012 5:43 AM (GMT 0)
Sorry for the late reply - I found that Acupunture really really helped with my joints and wrist pain.
Posted 2/18/2013 8:10 PM (GMT 0)
Hi there, so glad I found this forum. I am 34 been suffering with small fibre neuropathy for past two years. Finally diagnosed last December. Started when i was diagnosed with coeliac disease. I also have suspected sjogrens as noted by my neurologist or a mixed connective tissue disease in evolution. Am on vit d supplements, lyrica and thiamin. Unfortunately still suffer with red burning hands and feet after activity or standing for a few hours. Wonder how you all cope and if pre med UTC , has had a diagnosis of sjogrens yet or any advice?
Many thanks
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