Hi there from PA

Hello All,

I was diagnosed with MCTD in 2007, after about 6 months of various doctors not being able to figure out why I suddenly developed peripheral neuropathy in both feet. 

Here I am almost 7 years later, still have nerve damage in both feet, and I've had flares, but a lot of people's stories are so much worse than what I've experienced so far. I've been hospitalized, but so far only once last year for respiratory failure. My lungs filled with fluid, it was NOT FUN. 

Mainly I suffer from profound fatigue that leaves me able to do hardly anything. This disease is completely freaky, and it angers me that it gets so little attention when you consider how far it reaches (especially when lupus etc are included). 

I thank Abby for taking on this project, and for carrying it so far! 

Peace to you all,
LaraC

Hi LaraC,
I just joined this forum and am not quite sure how to get around yet but wanted to say hi and welcome you.
Your intro struck me because I've had peripheral neuropathy for many years, but so did my father, so mine was labeled idiopathic. Possibly inherited.
It wasn't until today that I read an article that connected small fiber neuropathies with auto-immune diseases.
Seeing your post was wild because I guess that's probably where my MCTD started, too!
I was diagnosed with MCTD because of a RA type flare up but my blood sests didn't have the RA markers and although my grandmother had lupus, my ANA was fine. My PCP is a real sleuth and wouldn't stop testing the blood till he figured out what was going on.
Eventually we knew I had fibromyalgia but the pain became so incapacitating and everywhere I was even told at a pain clinic I had Central Pain Syndrome.Then my PCP discovered I had Lyme Disease on top of everything else! When that was treated I felt better for a while but just...so...tired...
AND I fell down a lot. Like A LOT. Three or four sprained ankles a year and tripping all the time up stairs...acute pain on top of chronic pain....I was losing my mind. But now it's all starting to make so much sense. Maybe that was polymyositis?
Just a few weeks ago I got the Malar rash, fever and REALLY SICK as my first definable lupus symptoms. So now I guess I've got it ALL and the thrill of symptom du jour from MCTD.
Oh well. Brain fog hasn't helped me figure it out too well. It has made it difficult to remember details and to put any of this in order....and I guess I'm babbling, but thanks for joining the forum and for talking about your neuropathy.
It seems like one at a time the pieces are all falling into place.
Hope tomorrow is a good day for you.
Soft hugs, Joanne

Hello Joanne,

"Symptom du jour" -- that made me laugh! That's EXACTLY what it's like! Complete craziness is what I also call it. 

I think my illness started years before my feet went "dead" ... I had intermittent shooting pain in both my feet for many years prior to the full blown neuropathy. Never went to doctor to figure it out, knew nothing would get done. One day I was at work, at my desk, my left foot went numb, and wouldn't recover. Next day, the right one. Doctors were stumped, finally landed at a neurologists office who ordered the right tests, and who then sent me to the rheumy. 

By the way, I also have neuropathy in my left forearm, and the last 3 fingers of my left hand, how is that for random and ridiculous? No rheumy I've seen has said anything about a connection between the two, so I'm glad to see you've been reading about connections, as I haven't seen that at all. Although I have heard of an autoimmune illness that only goes after nerves - Chronic Inflammatory Demyelinating Polyneuropathy. I haven't read up on this much yet, but need to find neurologist to discuss it. 

The thought of this progressively attacking my nerves leaves me jittery, since pain meds do not work on nerve pain. I've always just dealt with the shooting pain in my feet, and I still get them, although not quite as much as at the beginning. 

I have also fallen, not quite as much though the last few years as I've become just much more cautious and move slower, especially on stairs, curbs, etc. 

I have read that in Germany they are doing studies with large doses of alpha lipoic acid, and having some results as related to the neuropathy. I take 1200mg daily, split in two doses (buy it from GNC, only when it's buy one/get one), but can't say honestly if it's making any difference; because there's no way to tell if it would be worse without me taking it of course. I just figured, what's one more pill in the smorgasbord that I already ingest daily  

I had a crazy two week episode in April that left me completely wiped out, I was basically in bed, my docs were of no help, am thinking of changing rheumy. Last week, had flare that lasted 2 days, I don't get the lupus symptoms, but I do get to where I feel as if I've been beaten with a baseball bat, and I'm hardly able to get out of bed to even just get to the bathroom. I also get weird aches and pains just wherever the disease feels like acting up for the day. My teeth, tender spots on my face bones, kidneys, and they come and go, usually not hanging around for more then a day. FREAKY.

Why is no one studying us? You'd think somebody would find interest in something like this - we're just about exotic  

Ok now I'm rambling. Thanks for writing - and for the soft hugs  
LaraC

Hi Lara C & welcome to the forum,
thanks for the compliment