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Unread 05-11-2010, 09:38 AM   #1
Kathie Glenn
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I am writing to vent and thank those of you in advance for reading this. Just had another SFEMG (one yr after initial one for that diagnosed mg) and the doctor said it showed no signes of mg spreading into my body. To this point only my vision has been affected. Lately (last month or so) my legs have felt very, very heavy and weak as water. They feel like they can't hold me up or want to buckle. I have gained 40 pounds over the past 16 months while on Prednisone, CellCept and now Mestinon. I know that is a lot of weight for someone who initially weighed 130 pounds. And I know weak and heavy feeling in the legs can be a side effect of CellCept. BUT, I can't help but be concerned about the weakness in the legs and the feeling that they are going to buckle on me. Going up and down steps scares me. Have any of you had this experience, and if so, what did you find out from your sources about it? All of this is leaving me very depressed. My job was even changed at work - a career I had worked at for the past 25 years to a minimal administrative job that anyone could do. I feel it was done because of my illness. At a time when I need to be built up mentally, I have been put down and made to feel useless. Can anyone relate and how did you handle it. Part of me says that is what I needed - less stress at work. The other part of me says I need to keep busy and forced to think to take my mind off how I am feeling.

I hope someone can give me some words of wisdom. Thanks.

Kathie Glenn
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Unread 05-11-2010, 05:54 PM   #2
rezmommy
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Kathie Glenn,
I guess I have some words of support, I don't know how wise they are. My original symptoms started in August 2007 and I was not diagnosed until November 2008. During those 15 months I went through a lot. The worst part was feeling depressed and that I was crazy. At the time I was 35 and the doctors couldn't understand how my different symptoms fit together. Initially they thought that I may have had a stroke. I remember being in the hospital when the symptoms first appeared and the nurse leaned close to me and said, " now is the time to tell us about any illegal drug abuse". I was so weak and stunned that I had no reply.
Until you align yourself with a good neurologist you are probably going to have more questions than answers. My first neuro was not a good fit. He sent me home to wait and see if my symptoms went away. Eventually I met a neuro who perservered with many tests, clinical observations and listened to me.
I have noticed that stress is one of the things that my MG just cannot handle. If I find myself stressed, I notice the increase in weakness immediately. I have learned to back off of being supermom and having a good support system.
I too gained 40 lbs as I was on Pred for a year. I just weaned off of it on January. I am on Imuran and Mestinon and I go for IVIG once a week. I have generalized MG so my weakness affects everything. I do know that when I feel that I am getting worse that stairs are my first indication.
Do you have confidence in your dr and the direction your plan is going in? Do you have an MG specialist in your area that you could be referred to?
I know that there are many others on this site who will respond with words of wisdom for you. If you need more support you can message me. Please take care and know that you are not alone. Melanie
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Unread 05-11-2010, 08:35 PM   #3
ConnieS
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Kathie Glenn,

I'm sorry to hear of all that you're going through, it must be really tough, and I do know what you're feeling, since I went many months without diagnosis, then had diagnosis thrown at me one after another, then taken away and given again. At one point, I did start thinking that i'm really going crazy and when the neuro sent me to a psychiatrist and a psychologist, I went to both but they said my symptoms were not caused by mood or stress. Lol. That left me with a dead end. I tried three neuros after that, which all gave me different diagnosis and seemed to say things for fun. I gave up and did not go to a neuro after that. I'm not a very good example of what you should be doing as I do think that good neuros should be found. Lol. Where do you live? Perhaps Annie or the rest can help recommend a good one? I live too far away if not I'll have gone over.

Meanwhile, to keep ourselves sane and happy, I realized the easiest way was to focus on things I can do, and do them to the best!! Most of all, it also helps when we start thinking about others too. Do you have people who can give you love and support? Whenever I think of them, I feel that I have to go on, i have to recover. That's what made me last through this 1.5yrs. Find things which you love doing and try to do them everyday. Learn andcount the little blessings we have each day and things will become more beautiful. Someone once told me, appreciate and our lives will appreciate. Enjoy and we will become able.

But I also do think that symptoms need to be sorted out and a good neuro is a must! Do hope that you find a good one soon, one who really cares, would listen and won't say things for fun!
Anytime you need love and support or just a listening ear, come on here and rant! This is a great place and i love all of them here.
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Unread 05-12-2010, 10:08 AM   #4
Kathie Glenn
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Quote:
Originally Posted by rezmommy View Post
Kathie Glenn,
I guess I have some words of support, I don't know how wise they are. My original symptoms started in August 2007 and I was not diagnosed until November 2008. During those 15 months I went through a lot. The worst part was feeling depressed and that I was crazy. At the time I was 35 and the doctors couldn't understand how my different symptoms fit together. Initially they thought that I may have had a stroke. I remember being in the hospital when the symptoms first appeared and the nurse leaned close to me and said, " now is the time to tell us about any illegal drug abuse". I was so weak and stunned that I had no reply.
Until you align yourself with a good neurologist you are probably going to have more questions than answers. My first neuro was not a good fit. He sent me home to wait and see if my symptoms went away. Eventually I met a neuro who perservered with many tests, clinical observations and listened to me.
I have noticed that stress is one of the things that my MG just cannot handle. If I find myself stressed, I notice the increase in weakness immediately. I have learned to back off of being supermom and having a good support system.
I too gained 40 lbs as I was on Pred for a year. I just weaned off of it on January. I am on Imuran and Mestinon and I go for IVIG once a week. I have generalized MG so my weakness affects everything. I do know that when I feel that I am getting worse that stairs are my first indication.
Do you have confidence in your dr and the direction your plan is going in? Do you have an MG specialist in your area that you could be referred to?
I know that there are many others on this site who will respond with words of wisdom for you. If you need more support you can message me. Please take care and know that you are not alone. Melanie
Melanie: Thanks for replying. I went to a Neurologist here in Columbia, SC in the beginning and he referred me to a neuromuscular neurologist at the Medical University of SC in Charleston. He is as far as I know an MG specialist. He has MG clincis on Mondays and Wednesdays and does procedures (i.e. SFEMG) on Tuesdays and Thursdays. I guess the part that worries me the most is not knowing whether the leg weakness and heaviness is from the extra weight and medication or if the disease is progressing from ocular to all over. It just seems that when I go to my appts he doesn't spend the time talking and explaining to me and listening. I always leave feeling like I don't have my questions answered. I want to have confidence, but am not sure that I do at this point. Is that the depression talking? I don't know. I may do some research and see who I can come up with within several hours driving time from and decide soon if I need to see someone else. Thanks for taking time to write. I value your opinion and appreciate your caring. Kathie
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Unread 05-12-2010, 12:25 PM   #5
rezmommy
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Kathie,
I am seronegative. I was diagnosed on the basis of a positive SFEMG and clinical observations. Does your dr do the tests on your muscles to see how weak you are and if it is proximal or distal weakness? My dr would spend a lot of time doing this but he would also listen to how I described my weakness after different activities. I took a photo of my eyes at the end of the day so the dr could see how bad the droop was in both eyes. I know that getting the right dr is the key for you so I will be sending good vibes your way. ~ Melanie
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Unread 05-12-2010, 02:00 PM   #6
jmount
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Hi Kathie,

I'm new to this sort of thing (replying to e-mails to strangers). I too have MG. I was diagnosed in March 1997. I had a thymectomy in April 1997 and went into complete remission for almost 12 years. My symptoms at that time were a drooping left eye lid, left arm and left leg weakness. The leg was so weak that I had to lead with my right leg to go up stairs. My arm could be pulled down from a horizonal position just with a finger tip. I essentially had no strength on the left side of my body. My boss at the time questioned me and thought maybe it was all in my head. After 6 months of test, it was confirmed I had MG.

Anyway, regrettably I came out of remission in the spring of 2009. The 4 neurologist I saw in Tucson, AZ didn't figure it out. It wasn't until I was retired from active duty (28 years USAF) and returned to little ole' Alamogordo, NM and saw the only neurologist in town that it was determined after he conducted a simple tensilon test that my MG had returned. Although the mestinon helps, the symptoms I now have aren't going away. I struggle with steps and walking because my left leg weakness returned. I also suffer from a great deal of fatigue. I just do what I can each day and try not to push myself too much. When I over do it, I'm generally exhausted for a few days and confined to the sofa. It's very frustrating as I was a gym rat and avid hiker for 30 years. I now limit my activities to light workouts once or twice a week and golf 9 holes (using a handicap flag so I can park the cart next to the green). Fortunately, my left eye lid doesn't droop unless I'm really tired and my left arm (for now) seems to have the same strength as my right.

I would recommend you try the time release mestinon which does help some patients. Another thing that seems to make the fatigue I have worse is stress. Fortunately, because of all my medical problems, between my VA disability and military retirement, I don't have a great deal of stress so that helps.
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Unread 05-14-2010, 09:31 AM   #7
Kathie Glenn
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Quote:
Originally Posted by rezmommy View Post
Kathie,
I am seronegative. I was diagnosed on the basis of a positive SFEMG and clinical observations. Does your dr do the tests on your muscles to see how weak you are and if it is proximal or distal weakness? My dr would spend a lot of time doing this but he would also listen to how I described my weakness after different activities. I took a photo of my eyes at the end of the day so the dr could see how bad the droop was in both eyes. I know that getting the right dr is the key for you so I will be sending good vibes your way. ~ Melanie
Melanie: The doctor didn't discuss the sfemg with me except to say it didn't show any progression of the disease into my body. He didn't discuss "promiximal or distal weakness". In fact, he doesn't spend much time at all discussing anything. I do wonder how the results can be trusted when I am on Prednisone and Cellcept. I also take Mestinon, but didn't take it the day of the sfemg. I am going to have to take this further by asking for a consult for them to just sit and explain all of this to me. Thanks for writing.
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Unread 05-14-2010, 01:50 PM   #8
AnnieB3
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http://neurotalk.psychcentral.com/thread120198.html

Kathie, I'm confused. Did you have yet another SFEMG after this thread?

A consult with your neuro sounds exactly like what you need.

Annie
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Unread 05-15-2010, 07:28 PM   #9
Kathie Glenn
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Quote:
Originally Posted by AnnieB3 View Post
http://neurotalk.psychcentral.com/thread120198.html

Kathie, I'm confused. Did you have yet another SFEMG after this thread?

A consult with your neuro sounds exactly like what you need.

Annie
Annie: No I haven't. It was three weeks ago and was my 2nd one in 15 months. The first was for diagnosis purposes and the 2nd was to see if the disease had progressed to my limbs because I was complaining of weakness and heaviness of the legs. My legs feel like they don't want to support me. Kathie
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Unread 05-16-2010, 12:45 AM   #10
GratefulHickman
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Default Myastinia Gravis

Hi Katie, I was diagnosed with MG in my arms a few years ago, side effects from meds were not worth it. I found that the less activities I do, the less the symtoms bother me. I pray things work out for you.

Quote:
Originally Posted by Kathie Glenn View Post
I am writing to vent and thank those of you in advance for reading this. Just had another SFEMG (one yr after initial one for that diagnosed mg) and the doctor said it showed no signes of mg spreading into my body. To this point only my vision has been affected. Lately (last month or so) my legs have felt very, very heavy and weak as water. They feel like they can't hold me up or want to buckle. I have gained 40 pounds over the past 16 months while on Prednisone, CellCept and now Mestinon. I know that is a lot of weight for someone who initially weighed 130 pounds. And I know weak and heavy feeling in the legs can be a side effect of CellCept. BUT, I can't help but be concerned about the weakness in the legs and the feeling that they are going to buckle on me. Going up and down steps scares me. Have any of you had this experience, and if so, what did you find out from your sources about it? All of this is leaving me very depressed. My job was even changed at work - a career I had worked at for the past 25 years to a minimal administrative job that anyone could do. I feel it was done because of my illness. At a time when I need to be built up mentally, I have been put down and made to feel useless. Can anyone relate and how did you handle it. Part of me says that is what I needed - less stress at work. The other part of me says I need to keep busy and forced to think to take my mind off how I am feeling.

I hope someone can give me some words of wisdom. Thanks.

Kathie
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