This is a real problem for me, progressing lately! If I am out in the cold, drink cold water, eat ice cream, or anything like that, my speech just goes south fast! I can't move my tongue well, my speech becomes very slow and unintelligible, and I can't even explain to someone what is going on because I can barely talk! It's a fairly recent onset and getting worse quickly.

I'm also disappointed that Mestinon is not working well for me anymore. I get just a little effect from it now where it used to be a wonder drug. I've gone up to 90 mg but truly the only thing that allows me to function at all is Adderall. Usually I'm in bed or wheelchair a lot now.

But I'm most interested if anyone has this speech problem. Am I just going downhill in general?

Yes, Tracy, you are going downhill. You need to see your neuro right away. You mentioned in the other post about a "tight chest" and that's a warning sign of worsening too.

Do you have a pulmonologist who can assess your breathing?

The amount of acetylcholine (ACh) in the body is reduced by an enzyme called acetylcholinesterase (AChE). Mestinon helps inhibit that enzyme so that we can keep our ACh in our neuromuscular junction longer.

Heat and cold increase AChE and, therefore, decrease the available ACh. Everyone is different but heat and cold affect MG and can make you weaker.

I don't like how you're describing your chest wall muscles (in the other post). If you can't breathe well, you have to go in to urgent care, the ER or your doctor. If it's really bad, where you can't take a breath in or out well, you need to go to the ER.

I hope you can get some better treatments to help you feel better. Take it easy.

Annie

Wow Tracy! I have that problem too, but I have always attributed it to my Raynauds syndrome. It affects my hands and feet, nose, & tongue. You don't find much supporting that if you research it online, but it happens to me. If I eat ice cream, I sound drunk when I talk or like I have a speech impediment. Or a cold drink with lots of ice, or an Icee!! Do you have any symptoms of Raynauds? Hands or feet that get really cold, much colder than the surrounding air temp should make them? Do they turn white and/or blue? Do they do this when under stress or when exercising?

Just wanted to throw that out there. Good luck and I hope you can get on the right track to feeling better!

I agree with Annie. Worsening of MG can be quite subtle and you gradually seem to get used to it, until you have reached a level for which you can no longer compensate.

I think a good way of thinking about compromise in MG, is like a spring-you can pull it hard and it will go back to its original form, and then you can do it again, giving the illusion that it can withstand any pressure, until eventually it will not go back and you would have to fix it.

I believe this may also be one of the reasons that neurologists are so lay-back with regards to respiratory compromise. As many times real respiratory compromise will get better on its own with proper medications and rest.
this does not mean that it is not potentially dangerous and may be the final pull of the spring if you are not careful.

My neurologist's approach is to treat every exacerbation seriously, starting with more rest, then gentle change in medications and taking care of any possible triggers (electrolyte imbalance, infection etc.). Using non-invasive respiratory support as required. This makes the "pull on the spring" much milder and ensures that it will eventually return to its normal configuration, even if it may take a while. I believe it significantly decreases the risk of things getting out of control.

If cold makes you worse, how does the ice pack test fit in?

When in a very cold environment, my eyelids behave FABULOUSLY, but my walking deteriorates rapidly. This has been a point of confusion for me.

Tatia, uncertain diagnosis

Tatia, Cold will momentarily make MG weakness better. Extremes of heat or cold for any extended period of time will decline it. The Tensilon test will do that too. I got better with Tensilon but then got worse after the test than I was before it.

A lot of meds can have rebound effects too. Sort of like when you drink coffee one day and then don't the next you can get a headache from the lack of continual effects on your CNS (dopamine, acetylcholine, etc.).

Heat and cold can also be relative terms. If you get heated up in the summer, getting cold in the air conditioning of your car, for example, will help but it may not help enough to counteract how bad the heat made your MG. If you hit your knee on a desk, the thing that caused the pain is no longer hitting you but you still feel the pain afterwards.

If you have MG, weakness will not be evenly distributed all of the time. You can have really weak legs, especially if you use them more, and not have weak arms. The neurologist who diagnosed me said that you think your legs are weaker because you don't walk on your arms. Sometimes you can predict what muscles will be weak by the activity you do. Sometimes MG can be highly unpredictable and you can get weak anywhere.

It's the same with taking Mestinon. If you have sort of weak legs and really weak arms, it may make the legs better but not so much the arms. But that too can depend upon how someone's MG is doing in general. There's no easy algorithm for MG, sorry.

I hope that helps explain it.

Are you any closer to a diagnosis?

Annie

Thanks for the info Annie! That makes too much sense! It completely explains why, when my hands are cold, which they often are due to Raynauds, they are also incredibly weak. Walking in the cold, with gloves, to my car in the winter will leave me baerly able to grip my keyfob when I get there. If walking in snow, even in thick wook socks and heavy winter boots, my Raynauds kicks in and then I guess MG takes over and my toes become impossible to move, even my ankles won't bend, then the knees try to stop working. Very interesting.

Kage12, It might explain your symptoms but it could also be the Raynaud's or something else. When you don't get enough circulation to an area, the muscles are affected too. And the nerves. Have you mentioned this to your doctors? I think any worsening of symptoms should be mentioned since you don't want to assume it's the MG causing such unpleasant symptoms. No matter what the cause, it's hard when your body won't do what you want it to!

Tracy, How are you doing? Did you call your neurologist?

Annie

I've been getting progressively worse. I haven't posted here in a while, but let me catch you up.

I was hospitalized for 8 days in July with a "crisis." I was incredibly weak, and getting weaker every day. I honestly thought I was hypoglycemic from a new antibiotic I was on (I have Chronic Lyme disease, too.) It's one of the side effects, so I ended up going to ER on a Saturday because if it was making me more and more hypoglycemic I didn't want to keep taking it.

My sugar was fine. The ER doc said I was having an MG exacerbation. I was admitted and it was like, I could not get out of there. I got weaker every day and could barely walk or hold a limb up. They gave me IVIG right away (which I get anyway two days every other week.) I got so much worse in the hospital I could not believe you could be that weak. They called my neuro and he just kept saying it takes "3-5 days for the IVIG to kick in." Everytime I told the nurses I was having trouble breathing, they said my pulse ox was ok. It ran between 92-95 generally, I'm normally 99-100. I tried to explain.

I had a pulmonary function test and it was bad. So bad during the part where you have to puff and puff, the RT said I wasn't even registering on the maching and I had to keep trying harder over and over.

They tried to send me to inpatient rehab but could not find me a bed due to my being on IVIG. Finally I got a little stronger and could walk a few steps and they sent me home. When I got home, my home care PT STILL tried to send me to inpatient rehab. By now I just refused.

It took me two months to get back to baseline. I saw my neuro, he said I'd been in crisis. I had missed a few IVIG treatments here and there due to insurance issues and he said I can NEVER miss IVIG again.

At Thanksgiving, I had put off IVIG for a week so as not to lose the holiday week, and overdid it. I ended up in the ER but this time instead of going to the local small community hospital went to the larger one where my neuro is. I was there for 13 hours. For one thing they said I should have been in the ICU the entire time I'd been hospitalized in July. They told me over the phone to come in for admission. The admitting neuro decided I wasn't in crisis and sent me home since my vital capacity and breathing tests were within normal limits. I was not as sick as in July but feared I was close. I went home and got better quickly, thankfully.

My neuro is my 3rd one. Every time I see him, I tell him I am getting worse. The mestinon no longer works even though I have gone up to 90 mg 3 x a day. I can barely tell the difference. I have so little arm strength left that if I write (like a few Christmas cards) I am in so much pain, I have to use pain creams and sometimes take Vicodin. I cannot pick up anything, open a water bottle, hold anything, etc.

I used to have no ocular involvement at all, just generalized, but now I can't hold my eyes up when they do that test. My vision is SO BAD I feel like I am going blind. Sometimes things even look smokey. My legs are my best part. Probably due to all the years of running and walking, etc but my arms were always REALLY strong and now they are useless. I can't shower myself, dress myself, or even lift my laptop or dinner plate.

My neuro said I am on IVIG and Mestinon and there is nothing more he can do. To add meds would be backtracking; IVIG is far advanced than any of the other treatments. In his opinion, I am further along being on IVIG and adding any other meds that are usually treatments BEFORE IVIG is futile. I don't want to be on any more meds, but I have gone as far to beg him for a thymectomy. He said there is no proof it works.

I just got fitted for a special wheelchair because I can no longer sit up for very long. I can't hold up my head, or I"m in pain. I can't even hold my arms unless they are on armrests. I have to wait three months for a specially built $5,000 wheelchair so I don't have to lie in bed all the time.

I have strange things happen that I don't understand, like the tongue thing. It's been going on for not too long, but it only takes a couple breaths outside in the cold and I talk like a drunk. I don't have Raynaud's. I am having water dribble down the sides of my mouth again like before I was diagnosed, it's like it is going backwards. I can't drink out of a glass correctly anymore, it falls right out of my mouth.

If I do much of anything the pain that ensues the next day is horrible, mainly in my arms and hands. They seem to be my weakest link. Next would be back and shoulders.

I am at a loss with my neuro. My primary care doc wants me to get another opinion. My neuro says it's an incurable disease, this is your life now. There is nothing that can be done.

I certainly don't want to go on Prednisone, but why isn't he putting me on Immuran or Cellcept? It seems almost everyone is on those.

I hate going to the ER and it seems I never know when to go. I can rarely function to do anything. Thank you for telling me straight up the tongue thing is a sign of worsening. I forgot to mention it to my neuro but I seriously doubt he would have anything to say about it.

I've now had at least 4 positive tests so at least no one doubts my results. They also just cut my IVIG in half, because they believe I can get the same effect on a lower dose. I hadn't noticed any major changes in weakness; it's been a couple months now.

Oh I also did see a pulmonologist for the first time a couple weeks ago, because they told me I had COPD when I was hospitalized. He said right off he doubted that was the case (I smoked for ten years, over 25 years ago) and that he thought it was all MG related, so he is doing a bunch of tests. I am glad I was led to a pulmonologist, and now I am under the care of one. I don't like waking up at night always gasping for air, or as I fall asleep I feel like I stop breathing every time.