Tingling and numbness in my hands and feet was what got me into a neurologist's office in the first place, later to get an MG diagnosis. In my case, we never did entirely resolve what that was all about (I had trouble telling the difference between hot and cold, wet and dry with my hands--weird stuff), but I speculate that it was partly my raynaud's, which was at a peak when the MG stuff hit as well. It's really tough to differentiate these things sometimes, since many of us have more than one issue going on at a time. I hope you're able to get some answers! Good luck.

Interesting. Do you have weakness in the feet or hands??

I'm so sorry that you are dealing with this on top of your bulbar symptoms. In all of the MG cases that we have in our clinic, there are very few that don't complain of some sort of paresthesias (Altered skin sensation for those of you not in the medical world. I know that you know what that means but I want to make sure that others reading this can understand what I'm talking about too. lol)

First, when dealing with weakness in any part of the body you are bound to be physically compensating in other parts to pick up the slack. When using parts of your body that don't typically come into play (we'll say while standing), it creates stressors on that body part. Long term compensation will lead to damage and/or strange sensations because of the hightened nerve use or pressure.

The second thought is only speculation but it has held true with many of our patients so it's a theory that I'm inclined to stick with.

Second, Our nerves work just fine and in some cases too well. We have a problem with our nerves and muscles communicating. So you can ony imagine that when the nerves are doing their thing and the muscles aren't completing the commands, the nerves probably work overtime trying to get the message across. This would mean that it increases your nerve responses and sensations which then leads to the numbness and/or tingling that so many people experience.

So even if those sensations are not caused by MG directly, it does seem to be a by product of the disease. I have not experienced the same thing but I can only imagine how frustrating it would be to deal with.

I have a problem with depth perception as it relates to walking and sometimes it feels like I can't tell where my feet are when going up or down steps.

I know how frustrated you are with everything that you are going through but try to hang in there. I'm intersted to hear what others have to say on this topic too. Hugs to you from Hawaii!
Angie

Sorry, I forgot to mention that I have weakness in all parts of my arms and legs (including hands and feet). It's not surprising to me that your symptoms appear to be heading into a generalized MG state given all the issues that you've had this year. I would have been shocked if it didn't, to be honest.

The other thing that I forgot to say is that like MG, you can have Lupus and not have positive titers. There is such a thing as Seronegative Lupus. In fact I think that many autoimmune diseases have seronegative patients. Just a thought to throw out there. My PCP has suspected that I also have Lupus but my titers are all negative. Just one more curve ball for those in limbo. The upside to that (if there is such a thing) is if they aren't sure if that's the case, the treatments are roughly the same. Again, big hugs.
Angie

I think I told you about the one paper demonstrating CNS involvement in MG, but I personally have found different kinds of weakness associated with my sensory disturbances, which are more than paresthesias at this point. My limb weakness which is associated only with heat and exertion does not really respond to Mestinon the way my purely fatiguable weakness does. I would not write sensory disturbances off to MG. MS has some pretty good mimics, like lupus. Sjogren's with CNS involvement is sometimes first misdiagnosed as MS. I am sorry you are on a complicated journey.

definite weakness in hands and feet. Before treatment, I could barely type, and I continue to drop stuff all the time. My feet cramp up like crazy if I wear heels (which require some foot strength to accommodate the odd position in which they put your feet).

I have worse proximal than distal weakness, but when very tired from exertion, the proximal weakness gets better faster. Sitting in an chair with my feet up, I know I am ready to go again when the tingling has disappeared from the top of my legs to the end of my toes and my ankles instead of being flaccid, flex. Dropping things and knocking things over when symptomatic is common.

When I am doing well, Mestinon is usually enough to cover the distal weakness. I have wondered if anyone else had recovery of function accompanied by loss of tingling in the affected area, another one of those things I hesitate to mention. :-) b.

Wow, these are all very good responses. Angie, thank you for your very detailed response as well! Well, it seems here there is some sort of sensory issue at times, which I've always had off and on. I have my appt today (on a freaking Sunday lol) so I will discuss this with my neuro and cover my concerns and symptoms. Thank you all!!

Good luck with your appointment today. Anxious to hear how it goes if you are up for sharing afterward. Hugs!
Angie