HealingWell
Search Close Search
☰

Understanding my symptoms.

Support Forums
>
Rheumatoid Arthritis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/7/2012 11:28 PM (GMT 0)
Hi there, my name is Lou and I have posted a couple of times on the MS site. I know I can't expect a diagnosis from anyone, but I tell you, I have heard better answers to questions from you people on this forum than in a doctors surgery.

Anyway I would just like some opinions with what could be my problem as my doctor is reluctant to send me to a neurologist (he thinks my symptoms are anxiety) honestly, I have heard this so many times by people on this site, it's as though this is everyones diagnosis if the doctors don't know what they have.

In 2006 I had two very bad episodes of vertigo (I had two CT brain scans which were normal), 6 months ago I had tremors in my left hand it lasted about 2 months and then disappeared, 4 months ago I developed severe shoulder pain, and stiffness. I also have pain in my forearm, wrists, elbows, and fingers. I have some pain in my hips and knees but this is more like stiffness and joint restriction. It is both sides as well and I also have a sore stiff neck.

Also about 5 months ago I developed pins and needles in my hands and lower arms, numbness in fingertips and severe burning this lasted for about 2 weeks and since then I still have constant numb fingertips and some slight burning and tingling in both hands. This is progressing to my feet now but nowhere near as bad. I have been off balance since 2006 since my severe vertigo episodes and I feel like I am drifting to the left when I walk. Sitting down at times is horrible, I have a falling feeling in my head. (a real case aren't I).   I know this is not anxiety because I have been anxious over the years but it has never affected me like this and I must say I am more relaxed in my life right now than I think I have ever been before. I am 49 for another couple of weeks then I move into the 50 bracket. All good. Thank you for taking the time to read this, I hope I can get some support and help as I am not nervous or anxious. Lou.    

Posted 2/9/2012 4:57 PM (GMT 0)
Hello Louisa and Welcome to Healing well.

I had many of those symptoms that came and went thru the years. One time I was very weak and unbalanced and "sickly" - that was because I was severly anemic. Then when I thought that was going well I was struck with fatigue, pins and needles and muscle spasms - that was because my b-12 levels were very low. Then it was the vitamin D. Come to find out my body does not absorb these properly so I have to get a b-12 shot, take prescription strength iron twice a day and (1) 50,000 vitamin d a week and (1) 5,000 vitamin d per day along with a multi vitamin.

I still have aches and pains and sometimes the tingling but its at a managable level now. I still feel tired but at least I am not so exhausted that I cannot get out of bed. I do have a constant ache in my hands, knees and hips but I contribute that to Rheumatoid Arthritis and Bursitis. I also have fibromyalgia and that contributes to over all fatigue, sore muscle aches (especially around the neck and shoulders), and sleep issues.

So, when added all up the aches, fatigue, tingling, numbness, pain, weakness, brain fog, and over all unwell feeling is attributed to malabsorption, fibro and RA. As long as the doctors work with me on regulating the symptoms with meds I am fairly good on a day to day basis.

It sounds to me that you might be suffering from Fibromyalgia. If you go to that forum and click on the top post that says "fibro 101" (I believe that is what it is called - it is on the very top of the forum in blue) you can read some helpful info and there is also a list of symptoms.

I would recommend seeing a rheumatologist. They are usually the ones that diagnose fibro, and other auto immune disorders. Just make sure you see a doctor that believes in fibro because some docs are still in the dark ages when it comes to that diagnosis. Not saying that you have fibro but you just want to make sure you get a doctor that is aware of that illness and is compassionate enough to help you w/o the "its all in your head" attitude.

Also would recommend getting a complete blood panel done. Have them check for b-12, iron, and vitamin D deficiency and an ANA and maybe a complete thyroid panel. (I forgot that I am also hypothyroid).

Unfortunately, there is no one test to say what you may or may not have. Sometimes its a matter of ruling things out, trials with medications and patient history. And, sometimes there is no real answer. If the doctor is a good doctor he will work on ruling things out one at a time and help with symptoms as you go along.

Also, have you ever been checked for lymes disease? I know that can cause a lot of similar symptoms.

Hope I gave you enough suggestions for a good head start. And, I hope you can find a good compassionate doctor real soon so that you can start feeling better.

Please, keep us up to date on your journey. We are interested and we care.

take care,
Posted 2/10/2012 1:16 AM (GMT 0)
Thank you Denita,

The information you gave me has helped alot, sorry you have all these illnesses but it does help to hear others have so many symptoms, you don't feel like your the only one who must walk into the doctors surgery and be rattling off a page full of complaints. I am on Vitamin B at the moment (only 1 a day, he wants me to take 3 a day) but if I take more than 1 I feel a bit sick in the stomach. I will keep in touch with any progress or non progress, the doctor sent me for Brain Scan number 3 last Tuesday (all clear AGAIN)! why he keeps doing the same test I don't know.  I have had a series of blood tests done, no thyroid problems. No anemia, no diabetes, I seem quite well as far as these things go. I am also starting to get a bit puffy in the hands now (first thing in the morning) along with the tingling, burning and numbness, really stiff too and sore to move.  Sorry, I could go on and on and on, no wonder the doctor is sick of me. Thank you again, I will keep in touch, and thank you everyone on this site, your postings are very helpful and in a sad way comforting. Lou.     

Posted 2/10/2012 3:09 PM (GMT 0)
I am glad that we could be of some comfort and help to you. Its so sad that we have to come to forums to find others that understand. Even when family says they do, they really cannot. No one that doesn't suffer can, and I am sure they get tired of hearing the same old complaints too.

Please come visit us anytime you want to vent, add some helpful tidbits of info, or even play our games.

And, please, check out the fibro forum too.

Even though your doctor is trying all kinds of tests, is he helping you with your symptoms? Just because there is no diagnosis doesn't mean you should
still have to suffer the aches and pains. If not, then I would get another doctor that is much more sympathetic, and compassionate.

please keep us up to date on your journey of diagnosis.

take care,
Posted 2/10/2012 9:50 PM (GMT 0)
Ask your doctor for a scan of your hands...if it is any way arthritis it will show up on the scan of your
hands...that's how mine showed up on an mri of my hands, seronegative will not show up
in bloodwork...many many well wishes and do keep us posted....
Posted 2/11/2012 12:43 AM (GMT 0)
Hi Lou

Keep at them i think their medical bag says first step " Anxiety"

but you arm thing sounds like what i get and i have Carple Tunnel which was caused by the RA swelling in the Elbow and wrists , i drop things all the time, i went to a Neurologist with vertually same symotoms as you worried id gotten MS he said pretty certain Not MS but did needle tests and got Carple Tunnel Both arms i got a Big Needle of Cortisone into wrist he said this breaks up the Tight Tendons,he did one arm first and it worked,perhaps you could investigate this, But you still need a root cause have you had all blood work up's RA is a tricky begger so is Fibromyalgia either one would suit.sorry if you said this already my memory is shot so i forget what you had posted once i get here to reply .

Posted 2/11/2012 11:28 AM (GMT 0)
 

Hi,

 

Thank you all so much for sharing with me some of your health issues, I am so sorry you have to live with these awful symptoms day in and day out and for there to be no option other than medication. You all have given me the kick I needed to keep at the doctors to find out the course of these symptoms I am having, I certainly know they are not normal and I know they are not due to anxiety. I will keep you posted on how I am going (I hope it doesn't take too long to find something out). I will also be looking for updates on how you all are going, I pray things go well.  Thank you for your kindness and support, for the first time in 6 years I feel like I have found people who truly understand me. Lou.  

Posted 5/12/2012 11:21 PM (GMT 0)
I wss dx as sero negative ra w/ 2 negative ra factors. Had extremely high ana, and an even higher anti ccp.
Is your doctor doing mri's of the brain with and without gad? Lesions are usually seen w/ gad. I have to say in my opinion you should see a neurologist especially regarding the vertigo. There's vestibular exercises to help.
I am one of the rare people w a negatve ra factor but positive anti ccp. If you aren't familiar w the labs. You normally do not have a negative ta and positive anti ccp.
Posted 5/12/2012 11:54 PM (GMT 0)
I'd ask them to check me for ra. I also have seronegative ra but a positive ANA like butternutsquash. I have similar symptoms that you have but no dizziness. It could be that more than one thing is happening. Good luck to you. Don't give up!
Posted 5/13/2012 10:09 PM (GMT 0)
 

THANK YOU EVERYONE, you have all been so kind and helpful, it is now May 14th, over the last few months I have had quite a bit of progress.  After a near fall from being so unbalanced I was finally referred to a neurologist (he is great) he has done a number of tests which were:  NCS, VEP, SSER, ENG- Caloric (horrible)

and an MRI which was supposed to be with and without contrast (they only did it without) I don't know why.

I have only received the results from my Nerve conduction test (NCS) which turned out to be carpal tunnel, this is great news but the neurologist has said this does not explain all my symptoms (ie. vertigo and balance problems) so I have (as said in a reply to my post) more than one thing going on. I see the neurologist this Thursday, May 17th for the rest of the results. A huge thank you to all of you, you gave me so much support and courage to search and not believe this was all in my head from being anxious. I will be posting the outcome of Thursdays appointment.

I will list all my symptoms here just so you know all of them.

Tingling (feet and calves)

Numb, tingling & burning (hands and fingers)

Burning and itching upper back)

Tremor - left hand only while resting and when reaching for things.

Extreme burning at night - middle torso.

Extreme vertigo - roughly every 1 to 2 years for the last 7 years.

Balance problems almost constant - also in sitting or standing positions.

Muscle/joint (not sure) weak, stiff and sore.

Blurred vision (spontaneous).  Had eyes checked at optomertrist - perfect. Apparently the VEP will show more if anything is wrong.

Restless leg syndrome most days (starts at my feet and lower legs but seems to go right through my body) a terrible aggitated feeling.

Kind regards,

Lou.

I hope you are all well (if that's possible with all that's going).   confused    

Posted 5/13/2012 10:15 PM (GMT 0)
Oh yes, I forgot to say I had a list of blood tests done to check for vitamin deficiency's, thyroid, anemia, red and white blood cells etc, etc, all came back good exept a slight elevation in cholesterol (which I already new) not high enough at the moment to require medication. I'm a walking mystery.

xx
Posted 5/13/2012 10:26 PM (GMT 0)
You don't have diabetes, do you???? They usually check blood sugar with other blood work, especially if you are over 40 but I thought I'd ask since you were having nerve problems.
Posted 5/13/2012 11:16 PM (GMT 0)
Hi jeanneac,

Thank you for your question. No, I don't have any signs of diabetes other than the nerve problems, the blood test came back ok.
I do have some problems (on occassions) with my bladder and bowel, urgency and frequency.
I really appreciate your response, thank you. Would you mind checking back in after Thursday (my visit with the neurologist) for my results, I hope to be able to post something which will be an outcome of some sort.
You sound like you have so much going on with your health yet you still had the time to post this to try and help me, I believe God sends Angels, and your one them.
Very blessed,
Lou.
Posted 5/14/2012 12:00 AM (GMT 0)
Good luck Lou. I hope your tests come back with some answers but some good answers. Sometimes when you are sick, you want to know WHY!!!! Hang in there!
✚ New Topic ✚ Reply