Worried

[michael13]

Hi everyone, Im a new member to this forum and i would like to first say the support and love is overwhelming and uplifting to all affected by the disease and all who are worried such as myself. But first a litte background, Im a 24 year old white male, who was diagnosed with mysasthenia gravis a little over two years ago, a thymectomy and low dose of Mestinon was pretty much all i needed. I have had frequent muscle twitching,and slight facial weakness caused by the MG. Recently(last few months) i have had a lot of cramps in my feet and more twitching than usual. I first attributed this to Mestinon which are documented side effects of the drug. I really became worried this morning when i woke up and my left thumb was very weak. I could bend it toward my palm and hold the position strongly but I could not move it the opposite direction with any strength. A lot of people might attribute this to the MG but i have no other weakness and MG rarely effects single muscles, esspecially on only one side. I have taken many EMG's during the diagnosis of the MG but that was years ago. So in conclusion a few questions:

1) Does the fact that i have MG effect my likelyhood of developing ALS
2) Does weakness come as fast as overnight(I am very aware of varying strenth so i know it was overnight)
3) Would MG mask a potential diagnosis for ALS
4) Does the listed weakness resemble the type of weakness from ALS

I know no one is a doctor on this forum but I just wanted to know from people who are experiancing these things first hand. I will definately set up an appointment with my neurolgoist at the earliest convience but any advise or info in the meantime would be much appreciated. Thank you in advance to all who respond.

 

[wright]

Hello Michael

Question 1: I know of no studies that indicate that having MG predisposes you to getting ALS. The diseases have completely different etiologies, so I think you're safe on that one.
Question 2: Weakness does not come that fast with ALS. If you are as aware of your body as you indicate, then I believe your weakness did occur overnight . . . so once again you're safe.
Question 3: If you have a competent neuro, then MG will not mask a diagnosis of ALS.
Question 4: The weakness you describe could be consistent with ALS, BUT you said it happened overnight . . . which is inconsistent with ALS. ALS is more insidious. You could have slept on your thumb in a funny way and caused the weakness you describe, by either hurting a specific thenar muscle or compressing a nerve.
Go to you neuro and I'm sure he/she will get to the bottom of it.
Take care

 

[LindaB]

Hi Michael,
Just a quick note. I have been living with a diagnosis of MG for several months, when suddenly, I developed fasiculations while off Mestinon, and muscle wasting. I went to Columbia Hospital in New York, and the neuro there told me that I might have both MG and ALS. She said they have patients there with both. I think it would be just bad luck if that happened, tho as they are completely different diseases. Right now, I am still taking the Mestinon , but have been dignosed with ALS. the Mestinon does help , but not completely. Hopefully. you will have much better news. I don't think a weak thumb is indicitive of ALS.
linda

 

[michael13]

Thank you for your time and concern to respond. i called my Neuro and they said the next availibe appointment is 9/11/08. I dont know if I can handle that kind of wait. If anything gets worse I guess I'll just go to the ER. The basis of question one was an article I read:

"We know that patients with MS are more likely to have other autoimmune diseases than persons in the general population (Somer, Muller, & Kinnunen, 1989; Seyfert, Klapps, Meisel, Fischer, & Junghan, 1990; Midgard, Gronning, Riise, Kvale, & Nyland, 1996; Biousse, Trichet, Bloch-Michel, & Roullet, 1999; Karni & Abramsky, 1999; Frese, Bethke, Ludemann, & Stogbauer, 2000; Kimura, Hunter, Thollander, Loftus, Melton et al., 2000; Isbister, Mackenzie, Anderson, Wade, & Oger, 2003; Dionisiotis, Zoukos, & Thomaides, 2004; Edwards & Constantinescu, 2004). "

I know it refers to MS but I interpreted that as anybody with a autoimmune disorder was more likely to aquire another. Maybe I was wrong in making that connection. (maybe MS may cause others but not the other way around)

Your answer to question 2 was very reassuring based on my confidence of the time frame.

Question 3: My Neuro is very good and I definately have MG, with out a doubt (just when i have it conquered this happens)

Your response to question 4 is possible but im always one to jump to the worst conclusion. The only reason I doubt the nerve explaination is because it seems to have gotten worse today(maybe im thinking about it more) but it seems a compressed nerve would be accompanied by pain and the symptoms would slowly alieviate themselves.

Once again I really appreciate your help and your time to go out of your way for someone sake you dont even know.

Take care

 

[wright]

Hello again Michael

As far as the paper you cited: the onset of ALS is unknown. I hope you're not under the impression that it is autoimmune in nature. Is it a possibility: yes . . . BUT . . . there are many, many, many, many other possibilities too. If that study is what has gotten you worried, then I hope what I just said helps to alleviate your fears.

Compression of a nerve doesn't necessarily have to present with pain . . . and again . . . it could be something as simple as irritating a muscle.

You also said it feels worse today: inflammation of a nerve or muscle can certainly get worse with time; inflammation is a complex process that just doesn't come and go. My suggestion for the time being would be to take ibuprofen and ice it down a few times a day.

Let us know how you're doing.

 

[michael13]

Follow up

Well, over the last few days, my strength has mostly returned. I spoke with my neuro over the phone and he is very confident that this is not MG related even though strength returns with rest and improves with doses of Mestinon. So the weakness is still a mystery. Thanks for everyones advise, support, and information.