Hi. As I'm sure all of you have experienced, the time it takes to get help due to long waits for appointments with specialists can be lengthy. I have Myasthenia gravis, but recently some of my weakness and other symptoms cannot be explained by MG. An ER doctor frightened me about MS, and since then I've been trying to read about MS online, which, of course, has led me to the vast sea of MS 101 readings, which really can't address the variety and degree of symptoms encountered by people who have already been diagnosed. My own neurologist is sending me for a sleep study first to see if the fatigue and daytime sleeping could be a symptom of MG related apnea. I don't know if these symptoms are anything anyone here might recognize, and I plan on reading more. In the meantime, here's what I've been experiencing:

Once mild paresthesia which began a few years ago, recurred in October with tingling cheeks, and became chronic after a recent episode of increasing problems. The sensations that remain more or less constant are one icy numb cheek, numbness in both hands but especially left, numbness in left toes and ball of foot. Inability to feel cold on outer side of left leg. Increasingly painful shock feelings in left leg. Noticeable strength deficit in left hamstring and leg in general. Cold feeling in right ankle that now is painful but not tender to touch. Feeling of tiredness that begins at about one in the afternoon, sometimes results in unplanned sleeping and always results in napping over dinner hour, brain fog (could be from my current use of methylprednisolone), inability to finish sentences often, and occasional forgetting of words. In October, I complained of an "icky core sensation" that I was having around the area of my diaphragm. It was like a tightening that I blamed on my weak muscles as I attempted to sit up straight in my chair (often an issue with MG), but it confused the neuro I had at the time. It didn't really hurt but felt like a tightness or constriction inward under my ribcage. I also have it on the inner thighs.

I'm worried about some small white spots on a recent MRI because I have been taking a very high dose of methylprednisolone, which could suppress problems that might be occurring. Of course, I'm having trouble getting my past and current images to one doctor.

I'm just as interested in knowing if these symtoms DON'T sound consistent with MS. Thanks in advance for any replies. Much, much appreciated.

Welcome to NeuroTalk:

I'll defer to our MS members here about MS.

But I'd like you to think about other things that cause similar paresthesias.

1). Low B12 is notorious for this. You will need testing at the doctor's and get your results in numbers. The lab ranges in US are still outdated (for a decade now), and lower than 400pg/ml may cause significant neurological issues.
Here is a video to watch... it is sobering and long but really you should watch it:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

This is my B12 information thread:
http://neurotalk.psychcentral.com/thread85103.html

The methylcobalamin to treat low B12 orally is now available for about 6 cents a day (if you go to Costco for it). There is no medical treatment existing today this inexpensive and dramatically needed by about 40% of us in the US.
So don't accept "normal" from your doctor...get the results.

2) another cause of paresthesias, is very low Vit D. So when you go for that B12 test which I hope you do ASAP, get this one done as well. Do not accept the RX treatment if you are low, because it does not work. It is D2 which does not work in humans. You will need D3, at a dose of 1000IU D3 for every 10 points to raise you to the new low accepted today of 50.

Low D is also implicated in MS and some treatments for this are higher than for non-MS patients. But it is thought that D3 will help most MSers in the long run.

Low D affects calcium metabolism, and tingling or numbness in the face is one cardinal sign of this.
This is also very inexpensive to fix.

Please consider these nutrients, and see if either or both are a problem for you, before going on to the more difficult disease states. Testing at a doctors typically is done easily....but the interpretation and treatment remains far below normal standards even today. That is why I made the B12 thread years ago for our PN posters and others who come here for help.

There is a DNA test to see if you are a non-methylator (cannot convert synthetic B12 to its active Methyl form). But the methyl B12 is so inexpensive now, you really don't need that test, unless your folate is also messed up. Both are methylated and may be not working if you have the DNA polymorphism called MTHFR.

For now just get the testing. It just may save your life. (as the video explains).

Thanks! My b12 is around 375. I do not think my doctor tested for vitamin D. I will look into that as well. Thyroid and Lyme both checked though. Thank you!

Thanks Mrs. D

I have had my Vitamin B12 tested regularly and am fine, but now I have learned a great deal more from the information and links you have provided on Vitamin B12.
This information has made it clear how important it is to keep an eye on our levels.

Thanks so much .

With love, Erika

Thank you again! I went to look up my results, which were 369, so I will begin taking a B vitamin supplement and bring this up with my doctor. It's curious that there can be such an epidemic of B12 deficiency in a culture such as the US where people consume an inordinate amount of meat.

Thank you so much again. I tried to reply, but the post did not appear. The video was sobering. How can something so simple be so prevalent where people eat a lot of meat, I wonder. Thanks for the valuable information.

If you have poor or non-existant intrinsic factor, you cannot absorb B12 from food.

If you have the DNA error (10-30%) in US have it, you cannot activate B12 (or folic acid) to their methyl forms which are the active type to work in the body.

If you take acid blocking drugs regularly for GERD or heartburn, you will not absorb B12 from food reliably or at all. Acid is required in the stomach to break the protein down enough for intrinsic factor to work.

If you take metformin or long term antibiotics you won't absorb adequate B12.

If you a vegan you risk low B12.

New work is showing some people have poor transcobalamin levels. This peptide is the carrier molecule for B12. If this is broken then high serum levels are necessary to compensate for that. Food sources when all things work normally only provide about 2-4 micrograms of B12 a day. Studies show 1000mcg taken orally can provide 13 mcg a day. The rest is lost.

The supplements are especially high in B12 orally to bypass these situations. The B12 can be absorbed passively without intrinsic factor if it is taken on an empty stomach.

There is a slight delay for new posters for your posts to appear.
This is because we screen for spammers. Soon you will pass that point and the delay should end.

Thanks again. I have been supplementing and have seen no improvement. In fact, tapering down my methylprednisolone has caused all my symptoms to worsen, including daytime sleepiness, fatigue, and paresthesias that have become painful. Now my medicalert bracelet feels like it is bee stinging me.

Hi Elinora, sometimes it can take a few weeks till you feel better,
after tappering off of IV steroids. Give it awhile before you say,
"it didn't work".

Feel better soon.

Thank you! To clarify, I have not been diagnosed with MS. I have been taking 416 mg of methylprednisolone weekly in conjunction with Imuran to treat Myasthenia gravis (autoimmune affecting acetylcholine receptors at neuromuscular junction). I was getting fatigue and sleepiness not attributable necessarily to MG and progressively experienced paresthesia since October. I had some small high signals in an MRI, but I have been taking steroids for a long time. The paresthesia has progressed to intensely cold spots, bee sting feelings where things touch or don't, and chronic weird sensations. We are reducing steroids to see what happens, and all things are getting worse, including unscheduled sleeping. It is all unnerving, no pun intended. Thanks for words of encouragement. I am afraid. I am a single mom and only financial provider to my children. I have been sick with MG for more than a year, and now I feel I am again in diagnostic limbo.