Ten years from a positive lip biopsy for Sjogrens to seroconversion to a highly elevated ANA, low C4. Also have severe PN which was diagnosed in 2004, but I had it much longer. It was insidious so, I didn't know what it was. I had Lyme as well, in 94. They are still debating over my diagnoses.

It sometimes takes time for the full clinical picture to evolve. Hope you find answers soon.

Hi all! I'm here researching symptoms while I wait for more tests to come back on my 18 year old daughter. Her symptoms seem to fit MS, but she had a brain MRI done and it came back negative for MS. The only note they made was that she had an extra blood vessel in her brain on one side. The neurologist said that was nothing to worry about. Now we're waiting for a slew (9 vials of blood) of blood tests to come back one of which is the myasthenia gravis panel.

My daughter's symptoms really started to be noticable about 6 months ago but they're getting steadily worse. Started out with just general weakness.
At first I believed her to be hypoglycemic or just not getting enough rest.
She's gained about 20lbs in the past year, I'm not sure if that's a symptom or just a result of the fatigue. She's always been very active and now she's always tired. 5'0, 120lbs now.

About 2 months ago she started complaining about falling. She fell 2x in 3 days and wasn't able to immediately get back up again. She describes it as her legs just went out and then she was too weak to get right back up. She said her legs weren't numb or tingling, just they felt weak. Also, there's been several times in the past couple months she's had me help her put her hair in a ponytail because she can't raise her arms that high. She complains she just can't feel one or both of her arms, no tingling or anything, just completely numb.

She works as a food server and she complains about not having the strength to hand a customer a styrofoam cup. In the past month her speech has started slurring where you would swear she was drunk. She says her tongue is completely numb, again no tingling just numb. The more she tries to talk the worse it gets. It gets so bad you can't understand her at all. She hasn't fallen in the past month, but now the speech is the biggest problem. One of her managers at work has asked if she's drunk because of the speech. I'm worried about not having a diagnosis, and how long this will be able to go on before she loses her job or a cop thinks she's drunk or something.

Last night I noticed she opens bottles of water with her teeth now. I told her not to do that and she told me she can't open the bottle with her hands. She handed it to me to open and it was a very easy cap to open. Now I realize how extremely weak she really is. I don't know what to do at this point. If it gets any worse it's going to be completely debilitating. We need a diagnosis and hopefully something to help her symptoms or at least stop them from getting worse! If the myasthenia gravis test comes back negative I'm completely stumped as to what else it might be or what other tests the neurologist will try.

Any suggestions what this could be keeping in mind the brain MRI was negative and other blood work she had done about 4 months ago ruled out vitamin B deficiency, Lyme disease, diabetes and hypoglycemia?

Welcome to NeuroTalk.

I'd like to offer up two early suggestions:

1) you say she had B testing? Was this B12? If the doctor said
"normal" to you, I'd suggest you get the actual test results. U.S. lab ranges go down very low to the 200's...and this is no longer considered "normal" with the new medical information out there.
If your daughter is down there, she could do with B12 treatment.

2) Low potassium could be a culprit too. The RDA for potassium has just been raised to 4.5 grams a day. Many people do not get this thru their diet. And weakness is one sign. There are also genetic conditions, that affect potassium movement into the muscle. One is called familial periodic paralysis. It is hard to catch with testing because the blood levels of potassium tend to change rapidly after a weakness attack.
This website will give potassium content of many common foods:
www.nutritiondata.com
If you check her diet, carefully, you can see how much she gets daily.

And also, make sure she is not "purging"...young girls do this to lose weight, and keep it a secret. When this is done, with laxatives, potassium is lost in the loose stools and the body gets low that way.

We have an MG forum, and they are very helpful over there...so I suggest you visit them when you get a chance.

http://neurotalk.psychcentral.com/forum77.html

And more? Did she have a bout of flu in the past year? Do go thru your memory bank and go back and ask docs for copies of blood work from that past! Then let docs do blood work and some MRI's Cat's and Maybe even PET scans if you can? These tests combined can help you all get your daughter diagnosed.
Thing about MS? it 'shows lesions' in the brain where 'demeyelination' can and does occur. For other 'auto immune diseases'? It does not, because it's occurring at the 'molecular' level, at the extremity nerve endings. They don't show up on MRI's, ETC... As they are too small, then nerve conduction studies are called for: they measure the speed/rate nerve 'action/reaction' occurs from the extremeties to that brain. The 'nerve conduction and velocity studies' are key to diagnosis.
Don't panic yet.. IF it's a 'demeyelination' issue that isn't MS [which occurs in the brain] but one that occurs in what's called the 'peripheral' nerve system [anything outside the brain] There are treatements and protocols for testing and getting treatments! So, THERE IS HOPE! Downside is how's your insurance? Makes a lot of difference as to what you mite have your problems treated with for both the short and long term. I went to BIG GUNS Docs at teaching hospitals to get my diagnosis. Other docs tend to be more conservative and treat some issues too conservatively... That is all up to YOU and your daughter, and what tests you get, ...then what more tests you get! BE SURE TO ASK FOR RESULTS! THE REPORTS May seem like 'greek' at first? But, because you NEED to learn the lingo...it'll come. And BE useful. My heart goes out to you and your daughter! The whole thing gets really, 'OLD' after a while? But then you gotta keep up to date for the long run! I've had AN autoimmune- neuropathy for over 7 years now. I still lead a life, and can get around, tho with awkwardness [for a lack of a better way of putting it] and I'm still fighting to the last!
Feel free to ask me about it, and PM me when you can... I realize this is something totally mind-freaking and body crumpling SCARY! We get THRU and get BY!
's and hope! And don't be shy! - j

I'm so very sorry for what your daughter is going through.

So far, the replies are right on the money. She needs to be seen by GOOD docs at the best medical center/teaching facility to which you can get her. She needs to have a large workup until they come up with an answer.

If you can get to one of those places, be sure to ask for the best docs available (neurology), ask for a nurse in that department and stress how very serious her condition is or have her primary care doc call and request an urgent appointment.

Wishing you the best.

Good luck and best wishes,

Sheltiemom

Do you know if your B6 Levels were checked??