[sunflower1116]

I am a 25 yo F who works in the medical profession and was extremely active. After a miserable and frustrating, yet mild, Winter 2011 in NYC I was finally diagnosed with MG- and also told I had had it for 15 years (I have had ptosis and double vision that long).

I know many of you have difficulty reading long posts so I will try to keep myself brief. I need some advice/help.

My diagnosis via SFEMG MS was also ruled out just as a precaution- and in some magic most likely never to be repeated in the history of medicine- 3 neurologists agree I have MG. As of now I am Sero neg and MuSk neg. My Thalmus is fine.

Initally I was put on Mestonin, but it made me weaker and I was hospitalized because I could not clear the excessive secretions in my throat. Even when we played with the dosing it didn't matter.

We started IVIG and initially I thought it was the miracle all the nurses were calling it, but 4 months later I still feel like crap; I am realizing that the IVIG in the hospital worked because I was laying in a bed not doing anything, and not in my real life.

At my last visit my neuro mentioned doing plasmapheris, but we ruled that out because I am Sero neg and MuSk neg- she stated there is one more kind of type to test me for (a genetic autosomal recessive) but it would require a muscle biopsy and her hospital doesn't do them she needs to send me somewhere and isn't sure where she wants to send me. She also said treatment would be radically different because the type doesn't respond to IVIG or plasmapheris; which is why she thinks this is the type I have, but we are going to keep doing the IVIG anyway.

Does anyone have any idea what the heck she is talking about? Does anyone have and suggestions for me?

I have already cut everything out of my life except for work & IVIG. I don't even walk up the stairs in my house anymore, I use a chair lift- which is actually extremely depressing for someone who used to walk up 5 flights to her office.

When all this started I wanted to get back to the "old me." Now I just don't want to be exhausted and feel like I am dragging 50lb weights on my limbs by 10AM anymore.


Sorry I ran on for so long. I appreciate all of your suggestions.

[Stellatum]

Hi. I am especially interested in your post because I'm seronegative too, and diagnosed by SFEMG. Mestinon doesn't really help me. IVIg did once and didn't twice, so I don't know. I'm always a little in doubt because the first neuro did two SFEMGs and found them inconclusive. The diagnosis was made by a different neurologist who did a third SFEMG.

Your doctor is wondering whether you have CMS, a congenital myasthenic syndrome. Here's the difference. MG is autoimmune. If you have MG, your nerves aren't communicating with your muscles properly because your immune system is attacking your muscle receptor cells and either blocking them or damaging them. But CMS is not an autoimmune disease. It means you're born with a defect in the communication between nerves and muscles. It might be that your body just doesn't produce enough acetylcholine, which is the chemical your nerves release to communicate with your muscles; or it might be a defect in the way your receptor cells receive the signal from the nerves.

The symptoms of MG and CMS are similar, but the treatment is completely different. MG is treated by suppressing the immune system. There are drugs for CMS, too.

In your shoes, I would push the neuro to find out who can make a CMS diagnosis. My understanding is that the Mayo Clnic is the place to go for that. My doctor doesn't think I have CMS because I'm older (43 when I got my first symptoms), and for some other reasons I forget. I have been on Imuran (one of the drugs that suppresses the immune system) for about a year, and it's finally working for me. I'm getting better.

I hope you get some answers.

Abby

Originally Posted by sunflower1116

I am a 25 yo F who works in the medical profession and was extremely active. After a miserable and frustrating, yet mild, Winter 2011 in NYC I was finally diagnosed with MG- and also told I had had it for 15 years (I have had ptosis and double vision that long).

I know many of you have difficulty reading long posts so I will try to keep myself brief. I need some advice/help.

My diagnosis via SFEMG MS was also ruled out just as a precaution- and in some magic most likely never to be repeated in the history of medicine- 3 neurologists agree I have MG. As of now I am Sero neg and MuSk neg. My Thalmus is fine.

Initally I was put on Mestonin, but it made me weaker and I was hospitalized because I could not clear the excessive secretions in my throat. Even when we played with the dosing it didn't matter.

We started IVIG and initially I thought it was the miracle all the nurses were calling it, but 4 months later I still feel like crap; I am realizing that the IVIG in the hospital worked because I was laying in a bed not doing anything, and not in my real life.

At my last visit my neuro mentioned doing plasmapheris, but we ruled that out because I am Sero neg and MuSk neg- she stated there is one more kind of type to test me for (a genetic autosomal recessive) but it would require a muscle biopsy and her hospital doesn't do them she needs to send me somewhere and isn't sure where she wants to send me. She also said treatment would be radically different because the type doesn't respond to IVIG or plasmapheris; which is why she thinks this is the type I have, but we are going to keep doing the IVIG anyway.

Does anyone have any idea what the heck she is talking about? Does anyone have and suggestions for me?

I have already cut everything out of my life except for work & IVIG. I don't even walk up the stairs in my house anymore, I use a chair lift- which is actually extremely depressing for someone who used to walk up 5 flights to her office.

When all this started I wanted to get back to the "old me." Now I just don't want to be exhausted and feel like I am dragging 50lb weights on my limbs by 10AM anymore.


Sorry I ran on for so long. I appreciate all of your suggestions.

[southblues]

Or could she be talking about oculopharyngeal muscular dystrophy which I found out about just a little bit ago on another thread?
I don't know much about it, but here are the places I read about it.

http://www.ncbi.nlm.nih.gov/books/NBK1126/


http://neurotalk.psychcentral.com/thread173355.html

[sunflower1116]

Thank you so much for the info- I never heard of OPMD and although it doesn't really fit it has made me think that maybe I have something similar to MG or something that is co-morbidly existing that is yet untreated; hence why I still don't feel great.

Abby- Did you do IVIG once or once for a short length of time? It takes some time to work, so if you only did one or two treatments and are still weak talk to your doctors about trying again. I have mixed feelings about it right now- I get one treatment at home every week and some weeks it works and and others I don't think it's worth the headaches and joint pain (not to mention expense) but I'm sticking with it for now. I also had 2 earlier EMGs but one was done on really portable equipment and the other wasn't a SFEMG. It also depends on the skill level of the person performing the test.

Originally Posted by Stellatum

Hi. I am especially interested in your post because I'm seronegative too, and diagnosed by SFEMG. Mestinon doesn't really help me. IVIg did once and didn't twice, so I don't know. I'm always a little in doubt because the first neuro did two SFEMGs and found them inconclusive. The diagnosis was made by a different neurologist who did a third SFEMG.

Your doctor is wondering whether you have CMS, a congenital myasthenic syndrome. Here's the difference. MG is autoimmune. If you have MG, your nerves aren't communicating with your muscles properly because your immune system is attacking your muscle receptor cells and either blocking them or damaging them. But CMS is not an autoimmune disease. It means you're born with a defect in the communication between nerves and muscles. It might be that your body just doesn't produce enough acetylcholine, which is the chemical your nerves release to communicate with your muscles; or it might be a defect in the way your receptor cells receive the signal from the nerves.

The symptoms of MG and CMS are similar, but the treatment is completely different. MG is treated by suppressing the immune system. There are drugs for CMS, too.

In your shoes, I would push the neuro to find out who can make a CMS diagnosis. My understanding is that the Mayo Clnic is the place to go for that. My doctor doesn't think I have CMS because I'm older (43 when I got my first symptoms), and for some other reasons I forget. I have been on Imuran (one of the drugs that suppresses the immune system) for about a year, and it's finally working for me. I'm getting better.

I hope you get some answers.

Abby

[Stellatum]

I've had three courses of IVIg. The first was five days, and it made me better for a week or two, but that also may have been because I spent those five days in bed at the hospital. The second was also five days, at an infusion center, and I had an excellent response--it made me better for about six weeks. The third time, the doctor suggested we try three days, and it didn't help me at all. I'm doing really well on Imuran these days, but if I have a relapse I would try the IVIg again, but I would insist on the whole five-day course.

My first two SFEMGs came back "borderline" and "mildly abnormal." Then, on my insistence, the neuro who did them sent me to another neurologist, an hour and a half away, with a reputation for expertise in MG. He is also a neuro-ophthalmologist. He did a different kind of SFEMG. First, it was on my face (even though I have almost no eye symptoms). Second, it was a "stimulated" SFEMG, which means instead of asking me to slightly clench a muscle, he sent small painless pulses of electricity through the muscle via electrode stuck to my face. He thought the results were strongly indicative of MG, though he said he had seen hundreds of MG patients, and not one of them had my gait (at the time I was swaying from side to side from the waist up--for some reason I almost never do that any more). Anyway, my local neuro accepted the diagnosis and has been treating me for MG, with Imuran and occasional IVIg every since.

Abby

[motorcycle diva]

Sunflower,
I have been away from the forum for quite a while. The one thing that MG robs us of is our old life. I too was very active. I have accepted this one truth... whatever I was in a hurry to do will just have to wait. I wake up and feel great and do lots of things I want to do. I pay the next day with total exhaustion. I am learning to slow down and smell the roses. I take Immuran daily and have developed additional autoimmune disorders. I also worked in the medical field and have seen patients work through very difficult situations. I have great emotional strength sometimes and other times, not so strong. Enjoy each hour that allows you to do what is important to you and during those rest hours, plan something meaningful. I have learned not to waste time on the small stuff! I find it hard to believe that you could have had it for 15 years, sometimes the doctors are just not right. They are human and make mistakes. My suggestion to you is to stay calm, stress makes your symptoms worse. My diagnosis was a year of searching and testing. I actually diagnosed myself. Several specialists just simply did not connect the dots. When you find the right combination of drugs and diet, it will be tolerable. My life now is not my old life, but my new life has challenges but I found some inner strength I didn't know I had. Pray.

Originally Posted by sunflower1116

I am a 25 yo F who works in the medical profession and was extremely active. After a miserable and frustrating, yet mild, Winter 2011 in NYC I was finally diagnosed with MG- and also told I had had it for 15 years (I have had ptosis and double vision that long).

I know many of you have difficulty reading long posts so I will try to keep myself brief. I need some advice/help.

My diagnosis via SFEMG MS was also ruled out just as a precaution- and in some magic most likely never to be repeated in the history of medicine- 3 neurologists agree I have MG. As of now I am Sero neg and MuSk neg. My Thalmus is fine.

Initally I was put on Mestonin, but it made me weaker and I was hospitalized because I could not clear the excessive secretions in my throat. Even when we played with the dosing it didn't matter.

We started IVIG and initially I thought it was the miracle all the nurses were calling it, but 4 months later I still feel like crap; I am realizing that the IVIG in the hospital worked because I was laying in a bed not doing anything, and not in my real life.

At my last visit my neuro mentioned doing plasmapheris, but we ruled that out because I am Sero neg and MuSk neg- she stated there is one more kind of type to test me for (a genetic autosomal recessive) but it would require a muscle biopsy and her hospital doesn't do them she needs to send me somewhere and isn't sure where she wants to send me. She also said treatment would be radically different because the type doesn't respond to IVIG or plasmapheris; which is why she thinks this is the type I have, but we are going to keep doing the IVIG anyway.

Does anyone have any idea what the heck she is talking about? Does anyone have and suggestions for me?

I have already cut everything out of my life except for work & IVIG. I don't even walk up the stairs in my house anymore, I use a chair lift- which is actually extremely depressing for someone who used to walk up 5 flights to her office.

When all this started I wanted to get back to the "old me." Now I just don't want to be exhausted and feel like I am dragging 50lb weights on my limbs by 10AM anymore.


Sorry I ran on for so long. I appreciate all of your suggestions.

[teresakoch]

FWIW, my neuro told me that by the time a person is "officially" diagnosed with MG, they have probably had it for MANY years - the symptoms come on so gradually, they are attributed to something else.

When I look back at pictures of me, I can actually see the eyelid droop starting back when I was pregnant with my first child - she's about to turn 26. It's not terribly pronounced, but it's definitely there.

And when I think back to all of the times that I was just too tired to do stuff - things that I (and others) attributed to "laziness" or "being out of shape" - I realize that the MG has been present all this time. It's a bit of a relief, actually.....

I think it is SO much harder when someone is diagnosed at such a young age; however, it is good that you have found out about it now - you can take steps to prevent serious damage to your body.

Allow yourself to REST - I know that's a hard thing to do when everyone else around you is so active. And allow yourself to get mad - it's an essential part of the grieving process. I hope that you are able to get answers very soon; then you can start addressing your health issues.

[motorcycle diva]

The stress your body experiences from pregnancy would surely make symptoms of MG exacerbate if it was present. Many of the early signs fit so many other sources, one can understand why it is difficult to provide a difinitive diagnosis early on. I was seen early in my quest for a diagnosis by a specialist at an eye institute and was told ptosis and double vision can have many causitive agents. I was dismissed with a press-on prism! LOL To this day, I have to smile when I think of that appointment. I had done my homework and I knew that if the double vision moves and effect both eyes at some time, you must consider MG and I had experienced dv in both eyes during that year. I too found myself with a diminished energy level and thought I needed some vitamins. I experienced the facial muscle fatigue, limb weakness, trunk weakness, excessive saliva, difficulty breathing, and speech slurring. I was a text book case by the time I found the MDA Clinic in OKC, OK. As well, the local MG support group was a huge help. They have a quarterly newletter that keeps it's members updated on the latest issues. If you have a chapter near you, I urge you to get in touch.

Originally Posted by teresakoch

FWIW, my neuro told me that by the time a person is "officially" diagnosed with MG, they have probably had it for MANY years - the symptoms come on so gradually, they are attributed to something else.

When I look back at pictures of me, I can actually see the eyelid droop starting back when I was pregnant with my first child - she's about to turn 26. It's not terribly pronounced, but it's definitely there.

And when I think back to all of the times that I was just too tired to do stuff - things that I (and others) attributed to "laziness" or "being out of shape" - I realize that the MG has been present all this time. It's a bit of a relief, actually.....

I think it is SO much harder when someone is diagnosed at such a young age; however, it is good that you have found out about it now - you can take steps to prevent serious damage to your body.

Allow yourself to REST - I know that's a hard thing to do when everyone else around you is so active. And allow yourself to get mad - it's an essential part of the grieving process. I hope that you are able to get answers very soon; then you can start addressing your health issues.

[pingpongman]

What a hoot. My first visit to eye doctor with droopy eye and double vision he said I had dry eyes and just put drops in them and I would be fine. Like you I still laugh about it today.
Mike

[restorativepose]

Originally Posted by pingpongman

What a hoot. My first visit to eye doctor with droopy eye and double vision he said I had dry eyes and just put drops in them and I would be fine. Like you I still laugh about it today.
Mike

Mike it's funny that you say that... I was referred to a well-respected neuro opth at our local U and he told me the same thing: dry eyes. Use eye drops.

A thing of brilliance, isn't it?

Tricia