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

Tracy, I am so sorry you are doing so poorly. If you feel you need more treatments and are being kept from them, you have the right to get a 2nd opinion. I know there's not much to choose from where you are but you have the right to have enough treatment for a good quality of life. I hope you'll get the help you need.

Annie

Tracy,

You say that you have been seen by a pulmonologist. Try discussing with him the option of non-invasive respiratory support.
To me this has made a life and death difference.
Unfortunately, neurologists (for reasons I can't explain) stay away from even trying to understand respiratory problems.
Once you have your own respirator (and no nurse is deliberately taking it off to measure your non-recordable vital capacity) you have full control of how and when to treat your respiratory difficulties.
Further more it allows you adequate sleep and rest, leading to a significant improvement in your functional ability and quality of life.