Questions about MG
 

OK, so I originally joined the community because I was diagnosed with Fibromyalgia. It has been over a year since the diagnosis and I am worse. My doc has put me through every treatment option and nothing seems to work.

I learned about MG when I was first diagnosed with FM and immediately thought I had it (MG). I asked 3 docs and they all said it wasn't possible, as my eyes and face looked fine. I couldn't get anyone to listen. I thought I would shoot out my symptoms and just see what some of you all thought.

My symptoms are:
-Both arms (mainly wrist and hands) just feel numb inside. Like I can't get them to work properly without a ton of coxing. They hurt constantly and feel like they are on fire.
-My legs just hurt. They never really want to work.
-My brain feels like somebody opened my head and breathed some smoke in it. everything is foggy.
-My throat hurts often but not all the time.
-On good days, I can be active for about 4 hours. On bad days, I can't even get off the couch.
-All of my muscles are extremely sensitive to pressure (not touch). I have to constantly shift positions because the muscles touching the chair just start burning.
-All of my muscles just give out after moderate usage. I just have absolutely no stamina.
-It is very difficult to hold my head up. It feels like my neck is just to weak to do it.
-Sometimes I get really short on breathe. I just can't catch it.
-I get really frustrated and angry really easy. I was never like this before.
-I have absolutely motivation. In fact, I have stopped typing this message 3 times already.
-My memory is non existent. I got lost driving home the other day...in my own sub-division.

I have been ready others post about the dis-order and can't help feel a commonality. The problem is that any description of MG suggest eye problems...I don't have this. Plus, my symptoms occur for several days and then go away for several. Does this dis-order come and go like this?

Thanks to any feedback.

Hi--I'm afraid I don't have much to say that will be helpful, but I am so sorry you're going through so much.

Most of us here have two things to go on: our own experiences with MG, and what we've read about MG. But none of us has all the possible symptoms (at least I don't think so!), and all of us know that there are real MG symptoms that don't show up on the lists.

You say that three doctors ruled out the possibility of MG because you don't have eye involvement. Yet my neuro tested me for MG antibodies (just a blood test) and ordered a single-fiber EMG before my eye symptoms started.

Again, I'm really sorry I can't offer any practical advice. But welcome to the group. I'm new here, too, and you're right--this is a caring community.

Abby

Hello, and I am sorry you are going through all of this.

I have MG and Some of the things you have as well. I also have Fibro {so says the Dr.} Have they tested you for Lupus? Thyroid? or your Adrenals?

There is so much out there and from what you wrote it doesn't sound like MG to me, but I am not a Dr.

I have the short term memory loss and "foggy" brain as well and it can be VERY frustrating, I have noticed that since they started treating my thyroid, it has been improving. So talk to your Dr. about it, it is a simple blood test.

I hope you get the answers soon and please keep us posted.

rdawes, so sorry that you are having so many problems. :hug: Your symptoms fit MG EXCEPT for the burning, extreme sensitivity, and numbness -- we don't usually have that. Our sensations are typically "normal".

You DEFINITELY have something going on -- and it needs some SERIOUS attention. I don't know what to suggest. Maybe get somebody to look for MS, RA, Chronic Fatigue?? Hoping somebody will pop in here with more suggestions as to what this might be.

Thank you everyone for replying so quickly.

I have been tested for MS, RA, and Lupus. However, I don't think that I have had my Thyroid tested or my Adrenals.

I have had everything (according to my doc) ruled out, but I know that I have never been tested for MG.

I guess I mention "burning, sensitivity, and numbness" because I have no other descriptors. The Burning is from my muscles just being so tired and the sensitivity isn't from touch but rather pressure. For instance, if I lay on my side, after about 5 minutes my hip and shoulder (where my body contacts the mattress) start hurting so bad that I have to move. The numbness isn't numb in the traditional sense, but more of an internal feeling. My arms and legs just feel like they are dead and lifeless. Like the core of my body would be perfectly fine without them.

I know that nobody can diagnose me here, but it just feels good to talk with others that have similar symptoms and actually believe me. My wife (which is the greatest in the world) is always there for me, but when everyone looks at me as if I am just trying to get out of work or something, I just want to break down and lay on the couch all day. If someone says to me that I look great today one more time, I might snap.

Again, thanks to everyone for any and all advice.:grouphug:

I get a similar feeling when I stay in one position for too long. When I got MG, but before starting to take Mestinon this happened all the time and much more extreme than it does now. It felt uncomfortable to lay down, it is hard to describe what it felt like, kind of tingly, not really painful but more uncomfortable, and whatever part of my body I put my weight on was more susceptable to being my weakest muscle.

I don't have actual pain with my MG, but this may be because I generally have a high pain tolerance.

Many of your symptoms sound like MG, but I think there is also something else, although MG seems to occasionally cause symptoms that are not typical. If you have MG, maybe your symptoms are not typical because you also have Fibromyalgia (or another autoimmune disease since the risk of having/getting more than one autoimmune disease is high one you have one of them). If the doctors have "ruled out everything" but haven't tested for MG, I think it would be worth testing for, but of course I am not a doctor.

One of my least favorite things about MG is that I usually look normal and therefore am expected to be normal. It is hard to deal with these expectations.

I hope you figure this out soon.:hug:

I highlighted in RED the parts that could sound somewhat MGish. Could the other parts be from your Fibro? Overlapping autoimmunes can cause weird symptoms.

I didn't have ANY eye problems until about a year or two AFTER diagnosis. My neuro didn't think I had MG, either -- it was confirmed with a bloodtest. My only initial symptom was not being able to whistle. And, YES, in the EARLY stages, my symptoms DID come and go. Now, not so much.

Since MS, RA, and Lupus have been ruled out, I agree with you that MG seems to be quite possible.

Thank you Desertflower. I too hope they find something. I just know that talking with those that have experienced it might help me understand MG a bit more.

Jana, I agree it might be multiple issues, but I am just convinced that I really don't have Fibro and the doc has just landed me there since he can't figure it out. I trust my doc, really, but I just need to get deeper in some of the things that t could be.

I am going to The University of Illinois at Chicago in a couple of weeks. I have made appointments in the Fibro clinic, as well as, the MG clinic. Since they are about the best I can get locally, I figured I would start there.

Again, I really really appreciate all feedback, and please keep it coming. I will update what the Clinic says about everything also.

:grouphug: