clean scans, crappy symptoms: Just want to give up.

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blossomsession
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/22/2011 3:03 AM (GMT -6)   
Hi everyone!
I had ben having severe joint pain, stiffness and fatigue for a few years (in flares, 3-4 times a year) I was treated as having psoriasis arthritis because basically my rheumatologist could see that I was in pain (in a flare I need a cane to walk) but I didnt have the swelling or fever or blood tests showing rheumatic antibodies. We didnt find any psoriasis plaques but since I reacted well to low dose steroids during a flare we latched onto this diagnosis for lack of a better one. Last year a new symptoms showed up: weakness and shakiness in my legs, stumbling and balance issues. I also was having cognitive problems and my speech was sometimes slightly slurred. This was during a particularly intense joint/stiffness flare. I talked to my rheumy about LUPUS but he ruled that out on the basis of my negative ana results. Things got better. It is still unclear if the neurological things and the joint pain stuff are associated or separate issues.
Last winter I started to get "hot patches" on my skin and my feet felt like they were vibrating. My the fingers on my right hand had been falling asleep on and off for a while and I was concerned. I made a neuro appointment but towards the end of my 4 month wait for an appointment not only did the periodic weakness in my legs increase as well as stumbling but so did the "hot patches". All at once I had nerve pain behind my eyed (like an electric prodder behind my eye, eeek!) and my legs just stopped working properly. It was like there was lead in them. Stiff, heavy logs. I spent a few days unable to walk further than to the bathroom.
To wrap this us, my legs recovered, I had a MRI of my brain, EPT, lumbar puncture (which may or may not have caused 9 days of severe nerve pain and leg spasms in both following the procedure) with results of: congratulations, you are perfectly healthy.
Now my entire right side of my body has been numb and for the past 6 weeks (not completely numb, just reduced feeling and the thumb and two fingers feel "asleep" which extends to my elbow and my toes also right side sometimes up to my knees. Also everything that is "asleep" is also somehow "tight" or perhaps better described as stiff?) Also the leg weakness and shakiness is back (especially left) and get tremors in my left hands on and off. The vibration feeling is now pretty much on and off all day. My GP ordered a cervical MRI (pinched nerve)which came back: everything looks great.

Except I dont feel great. I had even requested an neuro-psychological evaluation because if this was some sort of malingering or hypochondriac thing, then I wanted to know now, before anybody threw that at me. The evaluation was negative (as in: "we dont feel there is an indication of a somatization disorder")

I feel exhausted and I feel frustrated. And the neuro said after my brain MRI "well, thank goodness its not MS" and has completely ruled it out on this basis. I am at a loss; no-one really knows what it is but "it is not MS".
But is it true?? What else could it be?
I dont want MS, but I do want a "real" diagnosis for this whatever it is!
At least I think I do, right now I feel like going to doctors is a complete waste of time and I should just get used things whatever they may be, forget about treatment or medication and get on with it. But sometimes my symptoms are really hard for me to accept (like the weakness which makes me sometimes always need my cane and really limits my activities with my family) Other things I can deal with (like how the shock and worry of burning or wet sensations is now over, though at times painful they are now completely uneventful occurrences to me)
Sorry this is soooooo long, just been a while pent up in my heart for so long and it really feels good to let it go.
If anybody has any suggestions about this, whether of diagnostic or commiserate-ing nature: thanks so much. Just wanna good cry.

blossomsession
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/22/2011 3:03 AM (GMT -6)   
Oh, Gosh, that really was long!! Sorry!

inkygirl
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/24/2011 9:54 AM (GMT -6)   
I am guessing you have M.S. all the symptoms you have experienced sounds just like M.S. You need to get another Neruo. And when they finally tell you you have M.S. then you have to decide which of the crappy meds. to go on, and which one will make you feel even more sick. I have been on most of them and it really is depressing.

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/5/2011 12:19 AM (GMT -6)   
Hi,
 
   I just wanted to say to try and be patient (hard to do I know).  Diagnosis sometimes takes time, unfortunately, so try and hang in there.   Just wanted to say that MS does not involve joint pain at all so if you have that it is most likely NOT MS.  I know the feeling well of feeling horrible and not knowing why, so please don't feel you are a hypochondriac or something, what you are feeling is very real...they just don't know what it is yet.  
 
   See if your doctor will treat the symptoms for now, redo the tests from time to time.  Make sure you document everything!  Over time a pattern will develop and it might help you and the doctors find a cause and hopefully some relief for you.  Best of luck!  Please let us know how you are doing.
 

cakelady11
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/5/2011 5:00 PM (GMT -6)   
Hi,
I thought I would comment for the very first time because I feel for you.  Let me tell you my story, I'll try and cut it back a bit.
In 1996 at the age of 36 the left side of my face and top of my head went numb. My brother-in-law, a neurologist did lots of tests on me. All tests came back saying I was fine. It didn't hurt so I went on living my life with a numb half face. A few years later my left leg became numb and i had tons of problems with my feet. I never put two and two together, I just blamed it on my long history of low back problems from working like a dog. My sis and her neurologist husband had gotten divorced so he wasn't around to put it together for me. In retrospect I had a lot of problems related to MS I didn't realize it.
 
 Now jump to 2008. At work one day my entire back got pins and needles, I thought, that was strange. Then it happened the next day, then the next, and so on.  That was the first time I started putting two and two together. My body was falling apart, I had pain, and I still made no appointment. I was to busy taking care of everyone else or working too much as usual. This past June 2011, I slurred my words at work, but no one noticed because it was a group of people all talking at once. I thought, did that just happened? The next day I was talking to my daughter and it happened again, she was alarmed to say the least. I made an appt right away. I have MS. Undiagnosed for probably 15 years. I'm still in more testing stage, then up north to the big MS guru. So no meds yet. And my joints do hurt like yours do. I'm blasted tired. I work on my feet 46 hrs a week. I'm waiting to see if meds will help me. I don't know how I could continue to work feeling like this. I'm hopeful meds will help me, just waiting to get to that point. I wish you peace.

Post Edited (cakelady11) : 8/5/2011 5:14:44 PM (GMT-6)

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