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1453524 tn?1295627371

My Story


My name is Jennifer.  I have 4 children and I live in Clarence NY. I have had odd neurological symptoms since I was about 14 but I would always bounce back and my doc's wold attribute them to stress.  About two years ago I have my 6th Bell's Palsy attack and never got better.  I have been going downhill slowly since then.  As for symptoms....well you name it I have it.  Most of my tests come back negative and even the one's that came back abnormal (which you would think would help our brilliant doc's find a solution) makes them scratch their head.

Thyroid - normal
Blood labs - normal
Spinal Tap- high presence on oligoclonal bands ( no lesions so they keep saying "possible MS")
Muscle biopsy - cpt defficient and low citrate synthase but again not enough to put them in an uproar
MRI's - normal
CAT scans - normal
EEG, EMG  - normal
sleep study- normal
negative for lyme

I have deep bone pain that seems worse in the bottoms of my feet and in my fingers.  I have vision blurring, floaters, light sensitivity and facial muscle spasms. I get dizzy.  I get disoriented.  Lower back pain, transient muscle spasm mostly in legs and arms.  One spell of real vertigo.  A buzzing feeling in my legs especially if I have walked around all day.  Weird parasthesia (not that any parasthesia is not weird) Weight gain even though I am on a gluten free diet suggested by immunologists even though blood work was negative for wheat problems.  I have a severe heat intolerance.  Cold sweats.  Problems swallowing on occasion.  and the list goes on.

Thanks for reading.  I feel so alone in the world.

Jennie
9 Responses
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429700 tn?1308007823
No, I don't get the drooping with the numbness.  My sister does having drooping.  It looks as though she's had a stroke, but after over a year, her problem appears to be more permament.
Helpful - 0
1386048 tn?1281012333
just wanted to say hi and add my welcome to this community!

sorry you have felt alone in all of this...i am predicting that you will now start to feel at home atleast on this forum.

all the best and keep in touch!

xo michelle
Helpful - 0
1453524 tn?1295627371
Actually Deb they do not know if all of the 6 or 7 times they said "oh it's bells" where actually bells'.  I do believe my first case at 14 was the real deal though.  I had the full blown droop and it lasted 8 months before remission.  The problem is is that I not only get get numbness but it shows in my facial muscle tone as well.  It's not a complete droop but you can see my eyelid is off as well as the corner of my mouth and the spasm increases.  Do you get the "drooping" along with your numbness?
Helpful - 0
1406332 tn?1315962760
WOW!

Our symptoms and stories are almost identical!!!! It was as if I was reading my own story.

Don't ever feel alone, although I know how you feel. That's why I frequent this site, it is a reminder that I'm NOT alone!

Hope you're having a wonderful weekend.

-Kelly
Helpful - 0
429700 tn?1308007823
More than likely you don't have Sjogren's because it's related to a very high ANA; however, my sister had to have a lip biopsy to completely rule out the Sjogren's because her has problems with dryness, too.  Maybe it wasn't a necessary test.  My guess is that Sjogren's does come and go like most autoimmune diseases so the ANA fluctuates.  I don't know diddly, though.  I can only speak from experience . . .

Here's another stupid question (which can ignore if you want to):
How do the neuros know the difference between Bell's Palsy like in the normal population or an MS attack?  I've had feelings where the side of my face was numb--I get this quite frequently.  I also have lots on TN pain from time to time like many people with MS get.
Helpful - 0
1453524 tn?1295627371
I am just moved to tears at the people in this community.  Thanks to you all.    I 'm going to get all of the reports from my tests this week and thanks to all of your suggestions I will look them over for the things you have suggested.   To rendean, I thought for sure I had Sjogren's as well but the neuro checked my ANA and that was normal.  I got all the damn symptoms though.  If your eyes feel like crap a good thing to try is Systane drops in the one time use vials. I found the stuff in the bottles had preservatives and made matters worse.  Also Twinnings herbal tea kicks but for dry throat and mouth.

Take care
Jennie
Helpful - 0
739070 tn?1338603402
Hi Jennie and welcome!

You have come to the right place, where people "get it" and offer support. Actually, your symptoms parallel mine except my LP was clear. Was told for years it  was Sjogren's syndrome, finally met my wise MS neuro who actually ruled out Sjogrens and said there are no more mimics, it has to be MS.

Hang in there as tough and tiring as it may be. We'll do our best to help steer you in the right direction for the right answer.

Ren
Helpful - 0
1396846 tn?1332459510
Hi Jennie,

Sorry to hear about what you are going through. You are definatley not alone here. We have all been through the ups and downs of trying to find out what is going on.

Your MRI, is that just of your head or is it of your c-spine and thoracic spine also?

When they told you that you have Obands did they also do bloodwork at the same time to compare? Also try taking a look to see if your IgG index was elevated in the LP, my doc says that is something they see in patients with MS.

Don't give up and keep on fighting, we are all here for you :)
Paula
Helpful - 0
667078 tn?1316000935
Hey I hear you you are not alone. It is a bad place to be when you do not know what is wrong.  Hang in there.

Alex
Helpful - 0
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