Another day, another appointment

Frustrating couple of days. Lots of appointments-nothing new, just tired of it. Drove 3hrs to see the jaw surgeon. I have to see him every few months due to the bilateral replacements.  He's just as frustrated as I am. While I appreciate his frustration, I'm the one who has to live with it. The creator of the TMJ Concepts joint spent a few hrs at my surgeon's hospital. He pulled my chart, and both feel my problems are systemic. Not due to the joint replacements.. My opening was measured at 10mm. Pretty pathetic. Average opening is 40mm. You should be able to fit 3 fingers in your mouth. I can get one:( There is crazy swelling in the tissues and muscles around the joints. Surgeon consulted with other drs as well and using radiation treatments to reduce the severe inflammation was discussed. When I take off my glasses there are deep indentations from swelling on the sides. My speech also become slurred.  I knew pain could be worse, but the dr feels that if we can get the inflammation under control, the pain can be lessened.  Sounds like a dream come true to me.

 

There has also been a new additional problem. I have a ton of inflammation at the base of my neck where it joins the skull. This is probably mostly due to jaw inflammation, but I also have damage thru the neck. Lately I've been getting crazy shock feelings in my hands/fingers. The muscles spasm and twitch and I can't control my fingers. Painful and frustrating.  I've also had severe headaches and fatigue. Dr. is concerned about neuro problems due to inflammation. He called my primary who wants to see me first thing in the am. I'm sure I'll score and MRI and who knows what else.  And, as with everything else, the headaches hurt-Like Crazy. 
 
Saw the eye dr today. Both corneas are torn and scarred, and uveitis is present yet again. Dr has begun the insurance process for cateract surgery. My age is an issue(36), but the eyes are awful. I know it's a minor procedure, I'm just sick of them.

Of course the joints are red, hot, and painful. I drive down to Duke next week for Cytoxan. Like I've said before, the only affects I've noticed is the hair. Wearing hats pretty much daily due to crazy crazy thinning. It's just about wig time:(  Duke emailed me and is talking to his colleagues about genetic testing.  Maybe a mitochondrial disease.  In addition to the Cytoxan, he is still thinking of adding a daily injectable med.  Concern is the fact that with other injectable meds, I would get baseball size welts at the injections site.  These were 2x weekly injections.  Daily ones would have me pink all over.  He did say the injectable med seems to help with autoimmune disorders that attack the gi tract.  I've been able to barely hang on after the feeding tubes were removed.  I love being "tubeless" and would like to continue to do so.  However, the gi pain is also pretty intense,
 
Keep your fingers crossed for my pcp appointment tomorrow. Dr is pretty concerned. I'm just worn out.  Like all of us, I'm tired of being in pain.  I see my pain dr next Friday.  Right now I'm on oxycodone and opana er.  I take 100mg of Amitriptyline at night to help with nerve pain and 20mg of Baclofen to help with muscle spasms.  I have no interest in increasing pain meds.  Gotta take care of little man:)  I have a ton of inflammation thru the sternum.  I've had cortisone injections along the sternum before and it helped a bit.  Maybe he'll be willing to do those again.  Not fun having them done, but I'm desperate for relief.

Thanks for taking the time to read this.  Just super frustrated.  Really, I just want a dr to tell me that this is as good as it gets, if that's the case.  I don't think I could ask for better healthcare.  I drive 3hrs north and 3hrs south to research hospitals.  My drs email, text, and pray with me.  I think it's time to start asking some hard questions as to what the best outcome could be.

 

Thanks for taking the time to read this post.  I know you guys all get my frustration with disease processes and treatments.  I told my eye dr that I feel like I'm running on a hamster wheel.  Lots of effort to get nowhere. 

 

Thanks. I know you get the tmj pain:(

How does your jaw feel? Any improvement?

Long appointment with the primary dr. She's pretty concerned. When I hold my hands out there is a definite tremor. She said there is definite weakness in both hands. When trying to touch fingertips to my thumb, I had difficulty doing it quickly. She took a TON of bloodwork and is scheduling an EMG to test nerve conduction in my hands. Also a neuro referral. She could feel inflammation at the base of my head where it meets the neck. We've assumed it's due to the jaw, but it may be RA. Degeneration at that level of the neck is very dangerous. If RA is the cause, they may need to fuse the neck joints to prevent further instability. I'm choosing to believe that it is not due to RA. My old rd was convinced I had MS about 10yrs ago. My legs were giving out and I was passing out. MRI was negative. Dr reviewed my hospital admissions this past year. I actually spent 16 weeks inpatient in 2012-crazy. Fainting, headaches, and tachycardia were a common issue. MS is being batted around again along with a couple of concerning problems. The neuro will decide on testing necessary. Basically, the hand weakness, tremors, shocks and jerks are concerning enough that dr said to expect quite a few appointments these next few weeks. Also have another problem that I didn't mention before. It's a girl thing:) I haven't had a period in close to 4 months. Plus, I've been getting at least 10 hot flashes during the day, and many more at night. I sleep with a fan on high. I'm 36, so way to young for this to begin. I called my gyn and she wants to see me Monday. The overall concensus is that the10+yrs of high dose pred was masking these issues. Dr has me sitting at 28mg for now. That's the lowest I've been in 6yrs. I'm a bit nervous about all of this. I've had the other medical issues essentially my whole life. I don't want to add a new one.

I am so sorry that you are having to cope with so much at such a young age. You are certainly dealing with more than most. I really hope that your doctors can offer some hope. Hang on in there, keep in touch and know that there will always be someone here to listen. We may not be able to help but we can listen.

Take care and God bless

Jane

Hi rocckyd Bless your heart. I hope that your doctors can find some answers from the MRI, and can help you feel better.

love and hugs
Loretta

Oh, Rocky, I'm so sorry to hear about all that you are going through! It sounds like things are really rough for you right now! I'm not sure what I can say or do that will help, but I definitely feel for you -- especially your eye problems, as I have my own major, major eye problems. Hang in there! You are in my thoughts and prayers! It's still early, so there is always hope that 2013 will bring you some answers, solutions, and most importantly, relief.

Skeye

Thanks:) It is definitely not fun. I think what frustrated me more is the trouble with clear speech. That's what killed the teaching job. It's hard to say "endoplasmic reticulum" without a jaw restriction :)

I hope you can get your jaw figured out. It bites...come on, you have to smile:)

Saw the gyn today and it appears I'm in early menopause due to t to double checkhe Cytoxan. She mentioned hormone replacement therapy but feels Duke will probably veto it due to the other medical mess. I don't think I'd go that route anyway. No one ever died from a hotflash. I just went to make sure there isn't anything else that I should be concerned about. She wants me to come back in Feb for an ultrasound to double check for any other cause. I go down to Duke for infusions a few days each month, but I don't have an in-depth appointment with the Dr. until early March. If anything is found on the ultrasound it can be addressed then.

While I hate the thought that I'm already entering menopause, I can't have anymore children anyway. Not healthy enough. Good thing I got a great kid the first time around:)

I am so sorry you are going through menopause at your age. My menopause began wheni was 35 or so but that was due to me having a hysterectomy in my late twenties Sweats the worst part of menopause symptoms I think. Would you be able to try the natural alternatives, I think it's black cohosh that helps. There may be others, just google it.

HRT, if you can take it does help. I had some pretty awful symptoms but with the HRT they disappeared. Otherwise, it's just a case of using a fan, cool showers, cotton clothing etc. it's not much, I know, but every little helps. Even in the winter, and on HrT, i still have my fan on the go!!! I know nobody died from a hot flash but these flashes can be so uncomfortable and you can spend half your time changing the bed, changing your clothes so it would be good to get something to help.

Maybe if your doctor knows how uncomfortable you are, they will be able to offer some help. I think it would be worth asking again.

I feel for you, so much going on, and now this. I hope you can find something to help.

Take care

Jane

Busy day just about done. Whoo Hoo:) Therapist took it easy on me and did pain control. I've been going weekly since 2010, so the pt can take one look at my face and know how I'm feeling. Lots of ultrasound and e-stim combo. And a general agreement that things are going down hill. Pain dr could also tell things are rough. He listened to my lungs and heart and heard a faint rub. I'm not surprised since I've had pericarditis in the past and I know what it feels like. He could tell the eyes are inflammed and looked at all the joints. I'm lucky to have a pain dr that looks things over from head to toe.

We had a good long talk about pain meds. Even though I've been a chronic pain paitent for yrs and been in pain since a kid, I struggle with pain=weakness. I know-stupid, right? I think we all try to be tough, but eventually something has to give. I was on crazy high doses post-surgery, but we've been able to wean them down little by little over time. Unfortunately, it's pretty hard to rest the jaw and still do daily activities. Other joints also hurt and were red and hot at the appointment. We kept the oxycodone the same at 15mgs every 6hrs with an extra single pill at night. Dr added Opana ER 10mg for the night. I will continue taking the 20mg of Baclofen and Amitriptyline 100mg at night. I'll return in 3 weeks for a round of Botox to try and break the spasms. I'll also get cortisone shots down the sternum. I usually get 6-8, and they HURT. But, it's worth it for the month or two of relief they bring. Dr was concerned about the "rub" that he heard. He emailed my rheumy and CC'd me so I'll get the reply. Since I'm not running a fever and my O2 was pretty good, it's not an emergency but it is concerning. If I begin running a fever or the O2 decreases(I check it at home) it's the ER. Obviously that's the last place I need to be with the flu making the rounds. Pred was bumped back up to 35mg by the pain dr. Hopefully that's all that will be needed to decrease the inflammation and get rid of the "rub". It's not much compared to the 100+mg I've been on the the past. Still, I've been on steriods for over 10yrs and we are trying so hard to decrease the dose. Without fail, as soon as we got around 30mg, the heart and lungs act up. So. Incredibly. Frustrating.


I am a little disappointed. My son's swim coach works with adults in the morning. I've been swimming a few days a week, but not actually signed up for the class. The Y requires a dr's note if there's a medical condition. Most people get get away without the note, but they know I'm in and out of the hospital. So-had to get a note. Dr vetoed it for now:( He want's the flu season over before I'm around large groups of people. Ugh-really annoyed. He was actually pretty concerned at the start of my appointment. I was super pale so he pulled up my latest bloodwork. WBC was low so he went out and got a face mask. He also had a box of them which he sent me home with. I'll be rocking the mask for a bit. I'm concerned since I'm due for a Cytoxan infusion Mon. I'm hoping that it will kick out the inflammation-especially around the heart/lungs. If my WBC is too low, I'll get a decreased dose of Cytoxan. Really want the full dose.

Dr and I talked about the hands and menopause. Fun times, right? He saw the tremor when I held them out, and watched as I ended up flinging my keys across the room. I was taking them out of my purse, and the fingers jerked/spasmed. Whoosh went the keys. Told the dr to hide under the exam table. He wants the neuro to send him the test results as well. We also talked about my weight. A decade of steroids can pack on the pounds. I lost close to 40lbs when my gi tract became involved. When I got the gj tube, the weight stabilized. I'm now 5'11" and 185lbs. I'm so frustrated. The swimming was great for my joints and muscles, but I also was hoping for healthy weight loss. Dr told me to relax and not stress about it. With the hormone imbalance due to the Cytoxan, he doesn't expect the weight to be easy to lose, even if at all. For me, weight seems like one of the few aspects of my health that I can control. Now the stupid hormone issues are creating a weight issue in addition to the steriods. I can't wait for the flu season to pass so I can get in the pool. I want my weight to be as healthy as possible since there are so many issues I can't control. Swimming is the best excercise for me since it's easy on the joints, but the rhythmic breathing is good for the lungs. When I feel like I just can't swim anymore, I just need to look one lane over. There is a gentleman who is about to turn 100 and is blind. He swims in a far lane so he can feel the wall. Pretty cool.

Thanks again for all your support. I found this board and had planned on reading a few posts and maybe finding some tips. Instead I found of board of people who understand about CP and are quick to offer support. It was a lucky find:)

So-it was a busy day. I'm still in pain, and I'll always be in pain, but I know I have drs that support me. After reading many of your posts, I know I am luckier than most. My little man is spending the night at my parent's house. I'm dragging and I'm looking forward to sleeping in a bit in the morning. At 11 I'm being picked up by friends. We spend hours sitting on a pool deck, soccer field, or basketball court. So-we've decided to learn to knit. I've never even thought about learning before, but I think it will be fun. The plan is to make it a Sat. morning date:) Last Sat was the first lesson. It took me forever to catch on, but I finally did. Let's just say that friends and family are getting scarves as gifts this year. It's great to spend time with friends, and it's pt for the hands. I didn't get as much done this week as I'd hoped, but I got injections in each thumb. Slowed me down a bit. I'm looking forward to spending time with moms without our kids.

Wow, we do have a lot in common. Not sure if that's a good thing or a bad thing....

If you don't mind me asking, why did you take Cytoxan?

I note so much suffering here,that I dare not go on but,I have am with you,collectively.
Do I give up what little control that remains{of my life}or face the Intrathecal pain pump...preault strife
or move West,by myself,to Arizona for Medical Marijuana?
Four failed spine fusions cervical,lumbar/100 plus epidurals in 20 years/13 thirteen other major surgeries for lack of function and pain.Johns Hopkins only place that was usefull/I dread the condescending,fiercely rude attitude of surgeons.I was an alternate on USA Olympic Weightliftimg team
who never took a pill of any kind or drug.What do I do,cannot leave my apartment....pump or move?

Hi Rocckyd:

How are you feeling today? I hope you're feeling some better and your pain levels are lower today.

To answer your question, I took the cytoxan to treat my Lupus. In 2006 we found out I have RA too. Of course, Fibro is on my plate as well as Sjogrens Syndrome, Gastroparsis, pulmonary hypertension, chronic pericarditis, and chronic plurisey is now in the mix. My really tough one is I have developed mylodysplastic syndrome which is also known as a disorder of the blood or bone marrow. It can be mild in nature OR it can turn in full blown acute myelogenous leukemia.

How to treat MDS IS varied, it depends what type of it you have. My Oncologist thinks I developed it from taking the cytoxan, but that can't really be proven. However, ive taken just about every immuno suppresant drug out there so it may be a combination of the drugs. They have always told me the risks and getting LYMPHOMA OR LEUKEMIA is a possibility. Since they feel it's from a drug I have taken its very hard to treat. There has been talk about a bone marrow transplant, but recently a Infectious Disease Dr saw me at NIH, and they are wondering if I have a genetic mutation. I'm still awaiting on tests results, IF, I have it the only way to treat me is to DO a bone marrow transplant. That may be difficult as I have no blood siblings as I was adopted. My daughter is my only blood relative and we have to make sure she doesn't have the disorder.

If you have any other questions, just ask away. I'm more than happy to share with you. I do hope they are giving you medication prior to your infusion of cytoxan to protect your bladder. During the six months that I took cytoxan orally, they were not protecting my bladder. So my bladder is ruined, I ALWAYS have blood in my urine.

I hope you and your little man have a good day. I'll keep you in my prayers.

Hugs,
Barbara