NeuroTalk Support Groups - Your response means so much

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Your response means so much (https://www.neurotalk.org/myasthenia-gravis/163670-response-means.html)

"I am here for you anytime you want to talk. This is my second home, and I consider the people I meet as real sisters and brothers. We do need each other." Ginnie

Thank you so much, Ginnie. I can understand what you are saying..I have been itching to get on here today. I do appreciate everyone's words of encouragement and understanding. THANK YOU!!

Quote:

Originally Posted by jana (Post 843378)

I met the family through the wife's blog. Originally, the doctors thought he had MG. It took quite a while for them to diagnose ALS. It is sort of a process of elimination. He died last spring -- only 38 years old. Soon after, his wife deleted her blog. I think it may have been too painful -- and they had children. I learned sooooo much from her blog -- they were such STRONG Christians -- and so open about what was happening to him. I think about them often.

The thing about blogs, forums, and groups for ALS patients.............you don't usually have this for very long (several years) -- and part of the time you aren't able to really communicate very well. So, I would think that many ALSers would rather be doing OTHER things -- ANYthing else but spending time on a computer talking about being sick. MGers on the other hand -- we are in this for the long haul -- normal life spans. We have years to observe our symptoms, figure out how to manage things, make friends with other MGers -- it's really just "different", if you see what I mean.

I would think that ALS patients would be more likely to have something like Caringbridge sites -- but, you would have to know their names to have access.

You might want to set a "google alert" for "ALS" and "Lou Gehrig's Disease" -- that way you MIGHT find someone's blog.

When is your fiance's next appointment? If I remember correctly, the docs start looking for muscle fascillations -- may make your guy put on the gown and watch his arms and legs with GREAT intensity. Especially the weak arm/hand.

Hi Jana!! Thank you so much for all this great information and the blog sites. I look forward to reading them. It will be Monday before I do..Have some what of a busy Sunday. His next appt. is in March..so we will wait and see, seems to be the norm!! I do appreciate everything you have said and looked up and posted to me!! :)

Thank you, Alice...This is the first I have heard of there being MG and a MUSK MG...I have read about it, always thought they were the same thing!

Also, thank you for the heads up on the prednisone...it would have frightened me (if he gets worse) and I had not know this could happen!!

Yes, as far as Bulbar ALS I have read it starts in that region on only about 20% of PALS. So the percentage is low.

Thank you again!! It is so nice to know there are people out in this world willing to listen and offer advice!!

Hi, Seacoast. I had to process your post for awhile. I had a friend die of ALS too, so it's hard for me to even contemplate this disease.

There are a couple of things that bother me about his doctoring. One, he doesn't have a diagnosis yet. He's already been given Mestinon and Pred. Mestinon, as others like Desert Flower have said, is a tricky drug. It's often recommended by MG experts to take it at a lower dose at first. The dose he was given for Pred is awfully high. And if he doesn't have MG, why try it? No, I'm not saying to go against doctor's orders but you have to question why doctors do things sometimes. Pred is a very hard drug on the body and it's also very hard to get off of.

Also, while on Pred and Mestinon, the EMG's and antibody tests can and do go negative when they are in fact positive. If you don't have copies of the EMG test results, please get them. They may tell you more than the doctor has! ;)

Was this neuro an MG expert? The SFEMG is more specific for MG, however, it is not diagnostic of MG. The results have to be taken in combination with the clinical exam and other testing. Has the doctor actually said "You have MG?"

Has he seen a neuro-ophthalmologist, which is not the same as a regular eye doctor. They can assess muscle weakness of the ocular muscles and see if he has double vision. I didn't realize that I did indeed have double vision until I saw a neuro-ophthalmologist.

Have you taken any photos of his face? Can you tell if any of his facial muscles droop?

Sometimes with MG, you have to utilize a few different experts in the diagnostic process. It also helps to see a pulmonologist. They can assess if breathing is fatigable by doing the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests in addition to the "regular" pulmonary function tests. They might be able to determine if any reduction in breathing is "fixed" or "variable" and may give them more clues.

Mestinon has "normal" side effects (see PDF below). So many patients do not read drug information before they take a drug. Sometimes you can have side effects for a couple of days and then you won't. What dose did he start on?

I hope he doesn't have ALS. One thing you might want to consider, in addition to MG, is a B12 deficiency. It's very common in people over the age of 50.

Please keep asking lots of questions of doctors. Or here. When facing a serious disease, it's important to keep an eye on the details. For example, if he has MG, certain drugs can make him worse. Other things like stress, infection, surgery, hot weather, etc. can too.

One other thing they often do with MG is take a chest CT to look at the thymic gland (thymus). Some people with MG can have a tumor of it. If they "insist" on Iodine contrast, be aware that it can make MG worse too.

I hope you get answers soon. Take care.

Annie

Annie,

I one hundred percent agree with the prednisone being prescribed with out a diagnosis. The reason we have been given is that this is part of the "ruling out" process. He was first put on mestinon at 60mg three times a day. After 4 weeks, and worsening of symptoms, he was told to lower it to 30mg three times a day...still made speech worse. I do not have copies of the reading of the EMG or the SFEMG, but I will request these...this week.

He has no droopy facial muscles, from looking at pictures from two years ago until now.

I did not realize there could be double vision and he not realize it.

Thank you for the pdf, I am one of those that do not read about side effects. I will do better after this experience. He took the mestinon for about 8 weeks, not sure if that was long enough.

He did have the CT scan of the chest and that turned out fine. At that point, (I know this sounds awful) I was hoping it would show something. The worse part of all this is NOT having an official diagnosis. If it is MG, lets get moving to treat the symptoms of this disease. If it is something else, let us know so we can get moving either treating or managing the best one can. Not sure if that makes any sense at all, but it is how I feel.

At this point he is not very open with me about what he is going through mentally or physically. It is almost as if he plans to just wait to see what happens in his body...which scares me. I understand the dangers in waiting, espcially with breathing.

His doctor is over the ALS clinic in our area and does specialize in MG. I feel we are in good hands, but I question the high dose of prednisone too.

Thank you so much for taking your time to post this information to me. It is so helpful!! :D I have not heard about a B12 deficiency either. Any other suggestions, advice is so welcomed!!

I don't have enough time right now to look up everything I've read and discuss this intelligently but can someone here go through the type of MG or various types of MG (not just Musk) in which Mestinon might be contraindicated?

I am posting a link to one article for which quinidine is used for myasthenia gravis. Most people on here might refuse that med I think for any condition with which they might be "diagnosed" in addition to MG because they might expect it would aggravate their MG.

http://www.ncbi.nlm.nih.gov/books/NBK1168/

As far as statistics on this possibiity or these possibilities for your fiance, to the extent that it may originally look wrong or these may be only congenital myasthenias, well, there's at least one person on here who doesn't fit the statistics and who should have been written up in an article because of his family history...trying something which may work for a type of MG in which Mestinon made someone worse (and for which Prednisone might also be contraindicated) may be something you should ask the neurologist to consider in a last ditch attempt -- especially as everyone seems willing to experiment ... (maybe after trying adjustment of the dosage of the Mestinon and Prednisone).

I can't be sure but I have some idea that if someone had something like this and were treated as an ALS patient, that person might actually get worse and look like an ALS patient.

Had your fiance been taking any medication BEFORE these symptoms started? There are a couple of medications that can actually CAUSE the symptoms of MG. Also, there are some medications which are absolutely contraindicated with MG/ALS.

Just a thought.....

Quote:

Originally Posted by teresakoch (Post 844120)

The only medicine he takes is his blood pressure meds and these he was on for years before the speech issue started. That is scary to know that there are medicines that cause these symptoms. Thank you so much for sharing your knowledge!

Ohhhhhhhh, Seacoasthalo -- he doesn't work in a place where there are chemicals -- like pesticides, does he?? That kind of stuff can bring on symptoms, too. You know like the Gulf War Syndrome? And Agent Orange?

Thanks for mentioning meds, Teresa!! Sparked one of my remaining brain cells!!! :D

Quote:

Originally Posted by teresakoch (Post 844120)