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-   -   Mestinon making weakness worse??? (https://www.neurotalk.org/myasthenia-gravis/107108-mestinon-weakness-worse.html)

jana 11-06-2009 02:09 PM

DesertFlower, hehehehe -- bugs LOVE Tennessee!! It wouldn't matter WHAT variety of pumpkins I planted. But, I am going to look into alternatives to control them. I NEVER use pesticides. We have very few organic farmers in Tennessee BECAUSE of the bug problems -- but, we have the greenest grass and trees you have ever seen -- and never a water shortage.

Here is the Soc Sec definition of disability for MG:

11.12 Myasthenia gravis. With:

A. Significant difficulty with speaking, swallowing, or breathing while on prescribed therapy; or

B. Significant motor weakness of muscles of extremities on repetitive activity against resistance while on prescribed therapy.


If you HAVE this degree of difficulty, and your doctor won't support you, you need to find another doc!!!

I "personally" believe that MG does "best" when you don't work. But, if you are young -- like under 40 -- Soc Sec is probably going to "fight" with you. I hate that. When I was at the "big ten" teaching hospital, there was a young nurse -- 28 years old -- who had MG. She had a thymectomy, PEX, IVIG, Prednisone, Cellcept -- NOTHING was working -- she was using a CANE -- and was walking like a 90 yr old woman. It made me want to CRY! Soc Sec denied her OVER and OVER -- she was about to go before a judge. No one could figure out why EXCEPT for the fact that she was so young. Her doctor FULLY supported her application -- even wrote pages and pages of EXTRA notes.

Of course, applying for disability is a MAJOR STRESS in and of itself. *sigh*

DesertFlower 11-06-2009 02:33 PM

Disability & Bugs
 
Jana - thanks for the Soc Sec definition of disability for MG. I have read it and I suppose I am borderline...some days I have problems speaking (A) and other days I just can't do anything repetitive at all (B) but other days I can work and be somewhat "normal". I guess this is what my doctor was referring to, is that in his opinion I won't be able to get disability so he did not want to discuss it.

Honestly I don't really want to be on disability, I just want to be able to live and not stress about money. I live on a small budget as it is and I don't spend a lot of money, nor do I want to, but I am spending more than I earn right now. I am a simple person when it comes to wanting things. (Sunshine and flowers and nature are more important to me than having nice clothes or a new gadget or watching television) I am in the process of considering all of my options and disability is one of those options. If I did get disability, I would have the goal of getting off of it as soon as I figure out how to increase my income slightly or figure out how to take my medicine differently so I have less weakness. I do have other options, but energy is needed to start any of my options and extra energy is not existant.

I love bugs! When I was a kid I kept pet crickets, beetles, grasshoppers and more under my bed as pets. My sister thought it was creepy. You are probably right about bugs in Tennessee, best to try planting other plants nearby that are natural pesticides. I imagine if you look into it you can find some natural way to grow them. The bugs here in Tucson are great - tarantulas, scorpions and big colorful grasshoppers and of course the huge variety of butterflies & moths. I love them all. I try to have a garden where all the creatures can live. There are at least 20 tarantulas in my garden - we (my family) go spidering (like fishing) with a string on a stick to tease the tarantulas out of their burrow sometimes (not too much since we like the tarantulas). Send the bugs this way and the tarantulas will eat them all. :eek:

DesertFlower 11-06-2009 02:47 PM

Mestinon Disability & Antibiotics
 
Kendra,

There may be other doctors here that know MG but my understanding is that my doctor is very good with MG. He diagnosed me quickly which I appreciate more than I can express:Thanx: and has been helpful overall. I hesitate to find another doctor but if I decide to apply for disability I will consider it. My doctor only needs to report the truth about me if it is needed and I think he will do that if I ask.

I am glad you are off the antibiotic, that should help. For me antibiotics make me feel sickly for about 1 year after - I have to eat lots of yogurt and probiotics to get my body functioning correctly again so I don't get yeast infections. Luckily I haven't needed antibiotics for at about 6 years.

Twitching is a side effect from Mestinon, but for me I have found that it means I have to take less Mestinon for a few days.

I hope you are feeling well.
:hug:

dog lover 11-06-2009 04:14 PM

mestinon making weakness worse???
 
Desertflower,
Oh my gosh I HOPE it doesn't take me a year to bounce back from this antibiotic!!! I am really starting to lean towards it being too much Mestinon. I think that with the Prednisone it is just too much in the mornings with the Mestinon too. Hopefully the Pred is only temporary and I can go back to Mestinon only in 2 or 3 months.

As for your Dr. being willing to help if you decide to go ahead with the disability that is great!!! I think my MG is alot like yours. There are ALOT of people who have it ALOT worse but ours is still bad enough that we have days when we don't feel like doing anything. I have been tossing the idea of disability around myself. My family is insistent that I need to quit working and try and get it. Part of me agrees with that but the other part of me doesn't want to quit doing what I love. Of course finances are an issue with me too. I am so swamped in Dr. and RX bills right now I don't think I could possibly quit working before the first of the year. I just keep praying they can find a med or combo of meds that will give me good enough results that I can continue to work and still have enough energy left over to enjoy my off time. I feel for you and will keep you in my thoughts and prayers. Thanks for the info on the Mestinon.
Kendra


Quote:

Originally Posted by DesertFlower (Post 586841)
Kendra,

There may be other doctors here that know MG but my understanding is that my doctor is very good with MG. He diagnosed me quickly which I appreciate more than I can express:Thanx: and has been helpful overall. I hesitate to find another doctor but if I decide to apply for disability I will consider it. My doctor only needs to report the truth about me if it is needed and I think he will do that if I ask.

I am glad you are off the antibiotic, that should help. For me antibiotics make me feel sickly for about 1 year after - I have to eat lots of yogurt and probiotics to get my body functioning correctly again so I don't get yeast infections. Luckily I haven't needed antibiotics for at about 6 years.

Twitching is a side effect from Mestinon, but for me I have found that it means I have to take less Mestinon for a few days.

I hope you are feeling well.
:hug:



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