[dewcole]

Hi all,
I was wondering if anyone has experinced this before? As some of you might know, I was only recently dx'ed with MG. Although for years I have had a recurring dream(nightmare). In my dream I will fall and be unable to get up, or if I am driving I cannot pick up my foot to put on the brakes. I always figured it was because there were times this actually happened in real life. Not the driving, because I no longer drive. Scared I could not control the vehicle. Well last night a new "problem" arose in my dream. As it usually happens, I was in my home, and someone broke in. I felt fear, and knew they were going to hurt me. But I could not move to get out of the way. I couldn't even lift a finger.
I could not even speak. This is where it changed. I also could not breath. No matter what I done. I woke myself up yelling "I can't breath!" Could this be me struggling for real in my sleep, trying to breath? It is a horrible dream, and now it is much worst because I couldn't breath. I'm kinda worried about this, because it feels so real...
Also it was my internal med doc who dx me. I have been on amitriptyline and cyclobenzaprine for awhile now. He did not take me off either of them. I'm not sure if that is the right call. Maybe they are interfering with my breathing at night.
One more thing....I see most people on here have a neuro as their MG doc. I have no insurance, so that isn't really something I can afford right now. Can someone speak about the reason to have a neuro instead of just your primary doc....
Thanks for any input on this...
Dew

[Stellatum]

Hi, Dew. Your big question is whether this could be an episode of extreme weakness that happens while you're sleeping, and that's caused by the MG. I want to make it clear that I don't know the answer to that question.

I have something to pass on, though. It has to do with "sleep paralysis" (google that for more info). When you're asleep, you're normally paralyzed so you don't act out your dreams. But sometimes, people get into a state where their minds are awake, or partially awake, but their bodies are still asleep. Then they have that terrifying experience of not being able to move.

Here is the solution to sleep paralysis: To break out of the paralysis, you just need to find some part of your body that will move. When you can't move anything else, you can sometimes move your tongue. Wiggle your tongue vigorously back and forth. If you find you can't move your tongue, move your eyes back and forth as fast as you can.

This may not help you at all, but I suffered from sleep paralysis for so many years before I found this solution that I thought it was worth passing on just in case it helps.

I want to emphasize again that I don't know that what you experienced was sleep paralysis, and since you have MG, you should take the episode very seriously and tell your doctor about it.

Abby

[pingpongman]

My theory on GP doctors is not good as far as MG goes. I have yet to see one that knew A THING about MG. I read or heard that a GP may see 1 or 2 MG cases in their career. Even when I was in the hospital not one doctor or nurse knew what MG was. They even tried to give me the wrong meds. My wife monitors everything that goes in my mouth and veins. I have seen 3 neuros that even admitted they knew very little about MG. For me it is a matter of trust and faith. Does he/she listen to what I say and respond in an understandable manner.
Mike

[dewcole]

Thank you Stellatum and Pingpongman,
I am going to try the method you said, and research sleep paralyze. also. It does make me scared, but I see my doc on 27th, and I will definitely let him know.
Also, I have seen some people on youtube with MG. They wear a medical bracelet. I asked my doc about it, and he said it was not important to wear one. He had only seen one other case of MG. I was the first patient he had dx himself. I would like to know how important the medical bracelet is?
I got a CT scan for my thymus gland, and he(doc) said it was fine. I am wondering if I should try to get a more qualified doc? I have only been given pyridostigm for the MG. First I was taking 30 mg 4 x's a day. Then he raised me to 60mg 4 x's a day. His statement was "I gave you your life back"
I am far from having my life back. I am still extremely weak every day, and I am afraid he thinks I am fixed now...
My problem is that I have no insurance, and I have mounting medical bills that I cannot even begin to pay.
I do go in front of the disability judge the 11th of Jan. Kinda scared of that too, because I do not have many medical records for him to view. I have not had the money to go to the doc on a regular basis. My sister pays for my doc visits and meds now. Otherwise I wouldn't of gotten this far with answers...
Thank you to all that reply. Your posts are greatly appreciated.
dew

[jana]

Hey Dew!

Great Smoky Mountains -- are you in Tennessee?? Acccording to statistics I have seen on the net, Tennessee has the lowest disability approval rate.

Can you speak clearly? If not, get thee to a speech therapist PRONTO!! It will probably cost around $100-150, but the resulting evaluation and report could make the difference between being approved and denied.

If you are having trouble breathing, your GP/internest needs to put this in his records -- a breathing test (with the machine) would be better, but generally, ONLY pulmologists or MG specialists have this equipment in their offices. If your internist knows how to do the simple breathing test -- having you count out loud to see how far you get before running out of breath, get him to do that and document how bad it is. ANYTHING like this will help. GET your own copy of these medical records and take them WITH you to the hearing.

I'll have to go look up the impairments list on the Soc Sec website and post the link for you, but basically, the "automatic" MG disabling symptoms are significant difficulty with speech, swallowing, or breathing OR significant weakness in your limbs (arms and legs) while on prescribed medication (Mestinon will do).

http://www.socialsecurity.gov/disabi...dult.htm#11_12

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 can get your doctor to use any of these EXACT words in your medical records (IF these words are TRUE, of course), this should improve your chances of winning your appeal!

BTW, amitriptyline is on at least one "take with caution" list for MGers -- might cause problems, might not. I don't know about the other med you are taking.

http://www.mginc.mb.ca/docs/MG_DrugList_Final-1.pdf

[AnnieB3]

Dew, I'm sorry you're going through so much. Can you try to find another primary doctor who will try to understand MG better? Some primary doctors don't mind treating MG or learning more about it. Like these guys said, it's not as good as a neurologist treating you though.

Does your state have any aid you can have? You might want to look into any and all options; just give your Capitol offices a call to see if they can direct you.

Jana, Where did you get that med list? It's a good one. I like how they "code" meds red or yellow. One that I noticed was not correct, however, is Ketek. It is an absolutely contraindicated drug in MG. NO ONE should take it who has MG. It caused drug-induced MG in my Mom in 2006. It has a black box warning to that effect.

I don't know what else to tell you, Dew. Living with MG is hard enough without appropriate help, plus other complications like financial difficulties. What you really need is a sleep study too. Those feelings you are having while sleeping could be that your MG is worse while sleeping. If I have dreams that I'm choking, I usually wake up choking for real. Though I can have dreams where I can't lift my arms or drop things but that's simply a projection of a fear due to MG. It can be hard to know the difference. I really wish you could see a neurologist. Do they have any free clinics in your area? Some states do.

Good luck to you. Be very careful. If you get worse, please go to the ER.

Annie

[jana]

Originally Posted by AnnieB3

Jana, Where did you get that med list? It's a good one. I like how they "code" meds red or yellow. One that I noticed was not correct, however, is Ketek. It is an absolutely contraindicated drug in MG. NO ONE should take it who has MG. It caused drug-induced MG in my Mom in 2006. It has a black box warning to that effect.


Annie

GREAT catch, Annie!! I'm having so much DV, right now -- I had trouble finding ANY of my "regular" contraindicated meds lists. I think this is one of the Canadian lists. I like the color coding, too. The only list I could find today on the MGFA.org site was "wordy" (L-O-N-G).

[dewcole]

Originally Posted by jana

Hey Dew!

Great Smoky Mountains -- are you in Tennessee?? Acccording to statistics I have seen on the net, Tennessee has the lowest disability approval rate.

Can you speak clearly? If not, get thee to a speech therapist PRONTO!! It will probably cost around $100-150, but the resulting evaluation and report could make the difference between being approved and denied.

If you are having trouble breathing, your GP/internest needs to put this in his records -- a breathing test (with the machine) would be better, but generally, ONLY pulmologists or MG specialists have this equipment in their offices. If your internist knows how to do the simple breathing test -- having you count out loud to see how far you get before running out of breath, get him to do that and document how bad it is. ANYTHING like this will help. GET your own copy of these medical records and take them WITH you to the hearing.

I'll have to go look up the impairments list on the Soc Sec website and post the link for you, but basically, the "automatic" MG disabling symptoms are significant difficulty with speech, swallowing, or breathing OR significant weakness in your limbs (arms and legs) while on prescribed medication (Mestinon will do).

http://www.socialsecurity.gov/disabi...dult.htm#11_12

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 can get your doctor to use any of these EXACT words in your medical records (IF these words are TRUE, of course), this should improve your chances of winning your appeal!

BTW, amitriptyline is on at least one "take with caution" list for MGers -- might cause problems, might not. I don't know about the other med you are taking.

http://www.mginc.mb.ca/docs/MG_DrugList_Final-1.pdf

Hi Jana, thanks for all the info on your post. Yes I am in Tennessee, and those percentages aren't favorable huh?
As for speaking clearly...well today has been the 4th day in a row where I have slurred so bad that it was hard for my sisters to understand me. It seems to come in spurts. Along with the slurring comes the inability to walk. I do have severe weakness in all my extremities. Just typing these posts takes so long, because I end up hitting two or more keys at the same time.

I just got over pneumonia about 2 wks ago, due to me not swallowing so well. I am on the generic of Mestinon. Up to 60mg 4 x's a day now. I was dx on Oct 18th and started the meds that day. I have been unemployed for 5 yrs due to "something", and all the er rooms and clinics thought it was in my head. I initially thought it was due to my stressful job at first. I decided to take a yr off of work to take care of myself. By the time I should of gotten back in the work place, I couldn't. I was first dx with TIA's....which made sense. Long story short...I have not had the medical care to follow this. Only a few er visits( where my chief complaints were, slurring, right eye closed, and total body weakness) I had my sister take a pic of me when my eye was closed..that is how my doc realized what it was. I have only seen him 6 times. So I don't have alot of records. What I am doing is taking a vdeo record of when I slur, and unable to walk. Hopefully the judge will view them. They are over several days, with the date stamp on the video. I know I run out of breath pretty easy most days when I try to carry on any lenghty conversation. I am just now beginning to realize what this MG means
to my life.

Now I am overwhelmed. I I can't keep a good thought process, and I am trying to get all my records in order. One good thing is I looked up the judge I will have, and he has an 85% approval rate. I don't know what I will do if I get denied. I really appreciate your links. It is scary, because I have been living with different family members for years, and I do not want to be a burden anymore. I have a great work history, and was a single mom. Now i'm just scared. I will do what I can, but my options are very limited because I have 0.00 money...
Thanks so much
Dew

[dewcole]

Originally Posted by AnnieB3

Dew, I'm sorry you're going through so much. Can you try to find another primary doctor who will try to understand MG better? Some primary doctors don't mind treating MG or learning more about it. Like these guys said, it's not as good as a neurologist treating you though.

Does your state have any aid you can have? You might want to look into any and all options; just give your Capitol offices a call to see if they can direct you.

Jana, Where did you get that med list? It's a good one. I like how they "code" meds red or yellow. One that I noticed was not correct, however, is Ketek. It is an absolutely contraindicated drug in MG. NO ONE should take it who has MG. It caused drug-induced MG in my Mom in 2006. It has a black box warning to that effect.


I don't know what else to tell you, Dew. Living with MG is hard enough without appropriate help, plus other complications like financial difficulties. What you really need is a sleep study too. Those feelings you are having while sleeping could be that your MG is worse while sleeping. If I have dreams that I'm choking, I usually wake up choking for real. Though I can have dreams where I can't lift my arms or drop things but that's simply a projection of a fear due to MG. It can be hard to know the difference. I really wish you could see a neurologist. Do they have any free clinics in your area? Some states do.

Good luck to you. Be very careful. If you get worse, please go to the ER.

Annie

Thank you Annie for your response. I have tried every clinic possible in my area. I was able to go to one for a reduced rate, but I went to then for over a year, and it was like pouring water in a bucket with a hole in it. They made me feel like a second class citizen, that it was all in my head. I got really discouraged, and stopped going. I have also been fighting depression, and most days it feels like it's winning. I am trying really hard to keep myself together so I ca show the judge exactly how a day in my life is. I am not saying all days are bad, but most times they seem to string together for days.

I do need a neuro, but that will have to wait. My sister pays for all my doc visits and meds, and that is putting a strain on her. That doesn't even mention the thousands of dollars in blood work, mri, ct's and the like.

I am blessed to have my sister's. Some people don't even have a home, so I count my blessings every day...
Thank you so very much for your thoughts and kind words.....
Dew

[jana]

Dew, bless your heart!!

Ok, here is another suggestion. When I went to a speech therapist for an evaluation, she had me read a paragraph. I knew my speech was pitiful (like you, even my own family has trouble understanding me, sometimes -- especially later in the day). But, as I read the sentences of the paragraph -- my voice got weaker and "slurrier" (is that even a word -- LOL?) and finally just squeaked and STOPPED completely after about four sentences. I was FLOORED!! I had been "conserving" my voice -- just out of habit, I suppose -- and had never tried to PUSH my voice to its limit. When my voice completely disappeard, I started crying -- and was inconsolable for about five minutes. (And, I am so NOT normally a crier!!) So, try reading a paragraph at home -- taking NO breaks -- and if this ALSO makes YOUR voice WORSE, then ask the judge if you can DO THIS DEMONSTRATION for him!!

SOOOOO glad you have a judge with a high approval rate!!!