Hanging on by a thread....need your thoughts!!

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/27/2009 8:02 PM (GMT -6)   
Hi, I'm new in this forum but have been in many of the other forums on HW.

I'm just at the end of my rope right now.

I've had Hashimoto's thyroiditis, psoriasis, and asthma for most of my life, but they're all under control....I can deal with them.

Then early in 2008 it became clear that I had other problems; I ended up in a wheelchair by late August because of severe pain while standing and walking. I feel like I've been almost buried alive under an avalanche of new diagnoses beginning in June 2008 and continuing until last week: autoimmune hepatitis, fibromyalgia, rheumatoid arthritis, celiac disease, and now SLE (lupus).

Clearly I have a talent for developing autoimmune diseases.

The problem is that in 2008 I had a period of several months of vertigo, severe muscle cramps, blurry vision, double vision, urinary incontinence, ataxia, "butter fingers" where I was dropping everything, hand tremors, migraine-like headaches, etc. When I say severe muscle cramps, for example I could watch my foot go into a cramp and pull my little toe almost straight sideways. I had to grab it to stop it because it felt like it was going to break my toe!

Then all of the neuro stuff sort of just stopped, right around the time I went gluten free. Also, I had a brain MRI and it was negative....no plaques. So of course I thought, Ah ha! Gluten ataxia!

Yes, celiac disease can attack the brain; there are plenty of medical articles out there on that topic. It can even cause white spots to show up on MRIs, but not in the same places as are typical for MS plaques.

BUT I'm having a lot of neuro symptoms right now....same ones as in 2008 PLUS bowel incontinence (sorry about TMI). The vertigo and the double vision (vertical double vision no less) are MUCH worse now than in 2008. I was in bed nearly all day today from the vertigo. The interesting thing is that I'm still gluten free, and in fact have recently gone completely grain free at the advice of friends who have improved by giving up all grains. So why would my celiac disease be acting up?

So I don't know if I can blame any of this neuro garbage on celiac, or lupus, or side effects of my medications, or undiagnosed MS, or combinations of any or all of them.

Does any of this sound like MS to anybody here?? Should I have another MRI? I don't think they imaged my spine, just my brain before. Is it possible to have MS without plaques showing up on the MRI?

Thanks in advance for your help,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 10/28/2009 10:18 AM (GMT -6)   
Hi nasa,
 
You have a lot going on there.  I am so sorry.  Your symptoms certainly sound like they could be from MS, however MS shares symptoms with so many other diseases.  That is why it is so hard to get a diagnosis.  You very well could have early MS (before plaques or lesions show up) but there aren't many doctors out there that will give you a diagnosis without those lesions showing up.  Indeed, that is what MS means.  You can get "probable MS" but even with that, you won't qualify for treatment.  Usually what they do is "watch and wait".  If lesion show up then they will consider an MS diagnosis.   Check out this site, it has in-depth info on the diagnostic process of MS.  Good luck and welcome to this board.  Please keep us posted.
 
 
 
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/28/2009 11:59 AM (GMT -6)   
Hi Gretchen,

Thanks so much for your reply and the warm welcome! I see my neurologist on Friday, so will discuss it all with him, of course. Since this is the second "episode" of this cluster of symptoms it makes a slightly stronger case for MS....not that I want to be dx with MS! :)

But I do want to understand what's going on and be treated for it if possible.

It's all so frustrating!!

Thanks again.....taKe care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 10/28/2009 10:35 PM (GMT -6)   
You seem to have a good understanding of that "episode" seperated by time and space. I also hope you don't have MS.  Hopefully your neruologist can get to the bottom of this whatever it is.  Good luck and keep us posted.  I am glad you are here.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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