Do all neuros Suck
 

Hi everyone, really confused about were to post any more:(

Being in limboland just sucks.

I got to see the dumb neuro today. Thought I was being smart by avoiding the GP, ended up bitting me in the ****** After a brief explanation of whats been happening in the last 3 wks, he does his dumb neuro test, ya know touch your nose with your finger, push my arm, pull my arm, BS. Then he tells me that he sees no neuro problems and that is all in my head. Yup his words. So I asked him could he refer me to a physciatrist, he refused that. I asked for a MRI of my spine, since I've never had that done, he refused that. I asked him, in all the disease he knows of if there was any where he could direct me? and he said NO. I asked if he could at least treat my symptoms, and he said ,NO. He told me that prednisone and mestinon give some people euphoria. I thing that I would do with a beer or some wine, thank-you. What an idiot. I was told, go see my GP and go from there.

So after, I can't believe I was able to keep my composer, I got into the car and had a melt down. I really considered going to the hospital and getting myself commited:confused:

I hate it when drs screw with my thinking. Anyways I then went back to the dr office and was fortunate to get a stand in dr. She is new to town and is waiting to open her own practice. Well first she spent a good 1/2 hr with me. Now thats a record:D She totally understood the MG stuff and suggested that I stay with the mestinon, it if it was helping, it does, emmensly. She then gave me prednisone to get me out of this crash. Just for a week, I pray that it helps, and that 1 wk is enough.

Anyways that was my day, this really sucks getting a dr to help. Theys still didn't have my last MG blood test.:mad: Must have been the 5th time I've asked for the results, they seem to have gone missing.:cool:

Thanks for listening and sorry for the ranting, Patricia:)

Patricia, sorry you've had such a rough day! I think most neuros are just totally ignorant about MG. You're in the same boat I am. I've had 2 neuros say MG, the 1st of those being an MG specialitst, and 2 recent ones say no. Fortunately, I've got a caring GP on my side who has seen me at my worst, and keeps me supplied with Mestinon. Sound like you need to stick with the stand in dr who saw you after the high and mighty neuro finished tearing you down. If she opens up her own practice, follow her!! I can't believe they've lost your blood test results. You don't reckon they lost it on purpose if it contradicted the neuro, do you!! :D
Best advice would be to ask for the stand in every time you need to go, and just hope she opens up her own practice soon.
Hugs,

Hi Patricia,
Sorry you are having to go through all of that. Sounds like a familiar story unfortunately. Women have a much more difficult time being diagnosed with Myasthenia then do men. I was diagnosed by a GP with a positive blood test - went to a regular neuro who confirmed the diagnosis...he sent me to a specialist at the University. I went to the "specialist" who told me I was fine (by then I had 3 positive blood tests, but the "specialist" didn't like the lab they were done at so said they were invalid). I was on Prednisone, Imuran and Mestinon when I saw the guy...he then ordered a SFEMG but 'forgot' to tell me that I had to be off my medications for several days before the test. Then he took me off Prednisone quickly and repeated the test - said I was fine and that it was all in my head. I asked him for a referral to a Psychiatrist too - he started back pedaling then. He said he would refilll my Mestinon - I said, 'why would I take Mestinon if I don't have a disease?' He said it was safe and basically harmless medication and if I wanted him to he would refill it. I said that I wanted him to remove the diagnosis of Myasthenia from my chart, write a letter saying there was nothing wrong with me and to use a different billing code because if I didn't have Myasthenia he shouldn't bill as if I did. Then he said maybe I should get a second opinion...he referred me to Mayo where they confirmed the diagnosis of Myasthenia Gravis.

My advice, get another opinion...I love my local neuro - not an 'expert' but he listens to me and finds out things if I ask him. Keep track of everything yourself, get copies of your tests, have the doctors send you copies of their dictations. They often say things to each other that they don't say to you. Be sure that your tests are sent to a "reliable lab" - I had all of mine sent to Mayo rather than the local hospital. If you are on medications and scheduled for tests, find out from other MGers how long you need to be off before the tests are reliable. Schedule appointments as late in the day as possible so they see you at your worst. Do a lot of moving before the appointment - I try to time my Mestinon so that it is wearing off just before I see someone, I walk alot - if you can't walk, move your arms, chew gum, etc...wear yourself out - don't rest before your appointment.

I have probably gone on long enough...Hang in there! Keep believing your body. Turns out I do have something wrong physically - I may very well be crazy too, but that is not what brought me to the neurologist!:rolleyes:
Gabe

Thanks Gabe and lois
 

Thanks for the support.:) I don't know what I would do if it weren't for bt, this place has really kept my sanity.

The drs office phoned this morning and said that my blood test went back to UBC, this is the only place in Canada that does this type of testing. She told me it should be back in the office in a week or so. What happened to fax machines:rolleyes:

I'm really curious about this test. They do a different test in Canada for MG. First test is called qualitative, then the next test they do is called quantitative.

When they do the testing its compared back to your first test. All you samples are kept frozen for future testing. When the test comes back borderline, like mine did its tested again and then a second sample is requested a few weeks later. I was requested to have this test, but kept being told that the dumb neuro would do it. He never did, but the MG dr I seen in Vancouver did the test again, I don't know if she refered back to my original or not. I'm almost certain that she didn't. Would seem to be my luck with drs. :o

Anyhow, I'm so glad that I did get some prednisone. I was wondering how long does one usually take this stuff. She only gave me 1 wks worth at 25 mgs per day. I know all the bad side effects about this drug, so I really don't want to be on it for to long, on the other hand, I sure would like to feel, some what normal.:D Any suggestions Thanks again, Patricia :)

My god lightning struck
 

I just about had a heart attack:eek:

That dumb neuro just phoned today, and he said that after I left his office, he had to look over my file, and said that I was right, and that he hadn't done all the testing neccessary for eliminating MS. So he wanted to make sure he crossed all his T's and dotted all I's, (his words). So he is requesting a MRI of my spine.

Friday the 13, just might be my lucky day:D Or someone is looking out for me.

Sure made my day, Patricia:)

Good news about the MRI! At least you won't have to continue to wonder about that.
Gabe

Patricia, Prednisone isn't a medication you take for just a week and then abruptly stop. It is usually increased slowly, then taken for months, or even years. And if you come off of it, you are weaned off a little at a time. It isn't something to play around with. It's not like an antibiotic that you can start at full dose, take for a week or 10 days, and then stop! I'm not sure your GP knows what she's doing with the Pred! Gabe, have you ever taken Pred or another steroid? I had one very bad experience with steroids, was on Dexamethasone for maybe 3 months total. The neuro started increasing it slowly, then when I had such a bad reaction, put me in the hospital to increase it FAST, and began weaning me off of it again very slowly almost as soon as I got out. Mind you, I'm not real sure he knew what he was doing either! :D
Hugs,

Hi lois, Gabe
 

I'm not sure about prednisone either:confused:

I was given this when my back became so inflamed that I had to be hospitilized, I can't take anti inflamitorys, so the dr gave me 25 mgs of pred for 2 days. This really helped immensly.

The dr I had back then said that it was ok to take it for short term. The amount perscribed is what a person with asthma or bronchitis would take. Say if they got a viruse or something.

Today I took the 25mgs, and I think tommorrow I will only take 10 and then 10. I am feeling better, but really am concerned about not having a dr who really knows anything. My biggest concern is crashing again, when the pred wears off.:(

I guess I'll cross that bridge when I get there. What do you guys do when your crashing? What are the normal meds given, other then mestinon?

Thanks again, Patricia :)

lois, my husband just had to take that dexamethason for a adrenal test. They were looking for cushing syndrom. I can see this having a bad reaction for someone with MG, espeacialy because its directed at the adrenal gland to surpress ACHT. I think that any one with energy problems doesn't need to have there addrenals screwed with. Why did they give that to you?

Patricia, I'm not sure why he chose that corticosteroid as opposed to one more widely use, like Pred. He was, like most neuros, NOT an expert in MG. Well, at least he didn't kill me, though I never did recover my pre-crisis strength and stamina. Plus I've had breathing problems ever since the crisis, something I didn't have before. One thing in his favor is that he accepted the diagnosis of MG, without thinking he had to re-diagnose me, like so many other neuros do. It's as if not a one of them can accept the diagnosis of another. :D
Hugs,

Sorry it took me so long to respond...

Yes I have taken Prednisone for Myasthenia. it is very tricky - can improve MG by suppressing Immune system but can cause weakness. It would be good to see someone familiar with MG because they would have a little better idea how to deal with it. i was on Prednisone for 8 months and alternated doses 5mg one day and 40 mg the next...I started at a higher dose every day to get things under control, then tapered off on the low day until I was down to 5mg...the belief is that by alternating high and low dose days there are fewer long term side effects. When I went to the University for tests they took me off all of the Prednisone quickly (over the course of 1 month) - that was too fast! I was very weak, achy, exhausted, and it took a long time for my adrenal glands to kick back in.

I know they use high doses of steroids when people are having a breathing crisis and it is short-term.

You probably need to talk with your doctor about dosages - not sure if you were planning to reduce the dose baased on his order or not...I think there are specific guidelines about how much the dosage should be decreased at a time.
Good luck,
Gabe

MG doesn't hurt
 

Thats what the dr told me. Maybe its doesn't for some, maybe I don't have MG, maybe I have MS, maybe I don't have that either??? I do know, I have something.

Well yesterday, and today I only took 10 mgs of pred. I'm really feel bad. So achy, I'm having muscle spasms in my legs and back. And there absolutly know energy to do anything. Its seems no amount of rest will make it better.

I guess the end of this week I'll half to go see the dr. again.:eek: I don't know of any dr in my area that treat MG. I am going to wean down on the pred though. One more day of 10 then down to 5.

I try not to take any kind of meds, but sometimes you just have to, and that sucks. Anyways one day at a time, right:D I did read a while back, that people that have CFS take 5 mgs of pred everyday to help support the addrenals, apparently this was safe. I really wonder if anyone knows whats right.:rolleyes: Maybe I'll ask the dr to phone the MG specialist in Vancouver and she can recommend some type of treatment. I don't know:confused:

Anyhow back to bed. Have a nice day everyone, Patricia :)

Please be careful with the steroids. They can induce a severe weakness in M.G. Please do not taper on your own also as tapering too fast can send you crashing. I'm sorry but to give the dose you were given and if I read correctly, is not the way to prescribe for M.G. as far as I ever heard.

There is an article on pain in M.G. patients that I will post. I have pain in my muscles and severe when pushing it. It was funny or sad to me reading the article, about how it is overlooked. I think maybe this doctor listened. It seems to me if it is not written in the classic textbook and one complains, bingo well it just cannot be. Reading about all the different m.g. patients it seems to me, I don't think it is at all so understood, as they say it is. Some articles are around about different or more than one process going on.

Stick to your guns, it is your health. I wish you well.
I cannot post what I think of neuro's, not all but enough for my liking. I will post the article and also coming down off steroids can make you feel crummy and can flare symptoms. Please speak with your doctor about the way it was prescribed and taper. Also with antibody or Musk testing any immunosuppresion can affect titre results.

Username:
Password:


forgotten login

how to register



ABOUT NEWSWISE
Overview of Services
Media Subscribers
Source Institutions
What's New
Contact Us

LIBRARIES
Latest News
SciNews
MedNews
LifeNews
BizNews
Video/Audio
RSS Feeds
Search

CHANNELS
Breaking News
Features

RESOURCES
Expert Finder Tools
Contact Directory
Meetings Calendars
Awards for Journalists
Grants for Journalists

SUPPORT
Newswise Community
How to Register


© Newswise.
All Rights Reserved.

Source: American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) Released: Wed 27-Oct-2004, 10:00 ET
Embargo expired: Fri 05-Nov-2004, 14:00 ET Printer-friendly Version


Pain Often Overlooked in Myasthenia Gravis Patients
Libraries
Medical News Keywords
MYASTHENIA GRAVIS PAIN MANAGEMENT
Contact Information

Available for logged-in reporters only
Description

Myasthenia gravis, a neuromuscular disorder primarily characterized by muscle weakness and muscle fatigue, reported in a new survey by Penn State University researchers that the disease impacts their quality of life.




Newswise — Patients with myasthenia gravis (MG), a neuromuscular disorder primarily characterized by muscle weakness and muscle fatigue, reported in a new survey by Penn State University researchers that the disease impacts their quality of life.

While this finding is not totally unexpected, the fact that a significant percentage reported experiencing pain as a result of their illness is. “That such a large number of surveyed patients reported pain associated with their disease,” explained researcher Dr. Milind Kothari, “is very surprising.”

Kothari and fellow researcher, Dr. Kevin Scott, anticipated that most of those surveyed would indicate that MG limits their ability to work or perform moderately intense activities. “We were surprised, though, to see 50% of the patients report experiencing significant pain as a result of their illness with over a quarter reporting pain of moderate or greater severity. Pain is not commonly associated with this disease.”

The surprising aspect of the survey results is that the patients’ physicians were generally not aware that their patients were in pain and, consequently, failed to treat it appropriately. The authors recommend physicians should routinely query their MG patients about pain and decide if this warrants treatment.

Myasthenia Gravis results from an abnormal immune reaction in which the body's natural immune defenses (i.e., antibodies) inappropriately attack and gradually destroy certain receptors in muscles that receive nerve impulses.

Most individuals with MG develop weakness and drooping of the eyelids; weakness of eye muscles, resulting in double vision; and excessive muscle fatigue following activity. In addition, in about 10 percent of cases, affected individuals may develop potentially life-threatening complications due to severe involvement of muscles used during breathing. Although the disorder usually becomes apparent during adulthood, symptom onset may occur at any age.

The full survey results will be reported at the 51st annual meeting of the American Association of Electrodiagnostic Medicine in Savannah, Georgia, November 3-6.

The AAEM is the largest organization worldwide (approximately 5000 members) dedicated to advancing neuromuscular, musculoskeletal, and electrodiagnostic medicine. The primary goal of the AAEM is to increase the quality of patient care, specifically for those patients with disorders of the central and peripheral nervous systems, neuromuscular junction, and skeletal muscles. This is accomplished through programs in education, research, and quality assurance. The AAEM believes that only physicians trained in electrodiagnostic procedures should perform needle electromyography and interpret nerve conduction studies to assure patients receive the proper diagnosis.



--------------------------------------------------------------------------------

© 2006 Newswise. All Rights Reserved.

Thanks Gumby
 

For that info.

The reason this dr gave me pred in the first place was because I told her that it helped me in the past. I had been crashing for about 2yrs, every three to four months, with periods of weeks to recover. This one particular time, my lower back went hay wire :eek: I could barely walk. Anyhow ended up in the emerg, and because I can't take NSAID I was given pred. 25 mgs for 2 days only. Plus moraphine for pain. I was in the hosp for 2 1/2 days. When I got home it just got worse. My back pain was under control, sorta, but the rest just sucked. I did see yet another dr and no one had any idea what to do with me. Then they were looking for MS, yet all they ever did was give me a MRI of my brain. 8 months after the fact. :rolleyes: Theres that pathetic work again. Always lame.

Well I did finally recover from that ordeal. I was reading about CFS then, looking for some reason that I was feeling this way, and also some way to fix the problem. Thats were I read about the 5 mg of pred. So when I seen my dr I asked if this was ok to do. He said that he didn't see any reason for not trying, they do give more to people with asthma conditions or bronchitis. So 5 mgs for 7 days every eight weeks is what I was aloud. I found that it got me out of the crashing, the first time, second time not so well. I then decided that I would only do this if it was really, really bad.
Sounds like I'm being my own dr. And you know you just about have too these days, have barley met any dr worth knowing.

So this is what I know of pred. No one has dx'ed me with anything. So really there is no treatment. And I'm really sick of this. I am going to ask for more blood test. I don't even know if I'm negitive or positive for antibodies. The blood test keeps getting lost. :rolleyes:

I'm very glad that I have this place. Its really helped me find alot of answers to my health problems. Any help is really apprieciated. Thanks, Patricia :)

I would tell them to find your testing:) . I don't know your symptoms etc. but I would advise you to go in when your sick. I really mean this, show them when you are at your worse and bring someone with you and into the exam room and stay with you to participate in your questions. Again immunosuppression can affect titres. The best place to have your serum sent is Mayo but if you do it close to the steroid use, it's not accurate. So please if you are going to have blood work done ask the neuro when would be the best time after steroids. Have you had an EMG? I wish you the best in your quest for help. If you take Mestinon it can affect the results of the EMG.

Hi Gumby, Thanks for that advice, thats just what I did last thursday, went and seen the neuro when I was at my worst. He just thought "physco" all in your head. Although he did a very abrute turn when I called him on his shawdy work. He called me the next day to follow through on a MRI to eliminate MS. I also had a EVP done which was normal.

I've had the EMG and SFEMG. Those test where done by the MG neuro in Vancouver. Both where negitive, I have read since then that SFEMG are only 95% accurate when performed on facial muscles. I only had my thigh muscle and forearm done. Her opinion was, that she didn't think I had MG, but did perscribe mestinon to try? She never remarked on my borderline blood test, I had to ask for another, this is the one still missing. ;) Left me wondering too!!!:rolleyes:

End of the week is coming, and I will find that test. Feeling somewhat better today. yahhhhh :) Thanks so much, Patricia :)

Good luck. Keep plugging away. I am glad you are feeling better. I read stories like this and others, including my own battle. I look at the title of this thread and, and, and think, that should be a title of a book;) Watch yourself with the steroid taper.

Patricia, I'm so sorry you're going through all of this. I can certainly relate to your aggravation with neuros. I've only had 1 antibody test done. It was negative, but was done when I was just coming off steroids, so could have been negative as a result. So I don't really know if I'm seroneg, or actually seropositive but which was hidden by steroids. I've only had 1 EMG done, the neuro didn't even know enough to tell me not to take my Mestinon, then it was performed by a technician who was being trained, on a instrument which was not working right, and turned out, surprise, surprise, negative. So I don't know whether I'm negative EMG, or actually positive, but with the results hidden by Mestinon and sheer incompetence.
Gumby, many thanks for posting the info about pain in MG. I've always had some pain, but hesitated to mention it to the Drs., since MG "isn't associated with pain"!
Hugs,

My brain gets more and more twisted when I read post like these. What confuses me is that the neuro's all have different answers about testing. How long to hold eg. Mestinon for an emg. I have heard overnight, a few hours, I read somewhere a few days, except when there are swallowing or breathing difficulties. What is the correct answer for proper testing? Clinically weak muscles have to be tested, how many times has this been ignored?? There were some good posts on the old forum about testing but I guess they are in cyberspace somewhere. Now I read about a broken machine and a new tech.:eek:
There was a good reply on the M.G. ask the doc forum about testing, I will see if I can post same.
Note please, I know that titres can be present with steroids etc. but if there is a low result it is not possibly a true result, especially if on long term.

Myasthenia Gravis Can I have the muscles being affected tested?
06/21/2006 12:07PM



Question:
I have had problems swallowing and slurred speach on and off for for 4yrs. I had been told that this was a physical reaction to stress. It wasn`t until 3 weeks ago that I was diagnosed with a mild case of MG (through blood work results). Is there a test that can be conducted on the muscles being affected to find out the current condition of those muscles? In order to ensure that I am receiving the proper treatment.

Answer:
It depends on the treatment. Myasthenia treatment is divided into symptomatic and immunologic. If you are appropriately treated symptomatically with Mestinon, decrement might not be seen on your repetitive nerve testing. if you have been treated immunologically with steroids or another immunosuppressant, antibody titers can be repeated and might be decreased. I think a better test is how you are doing clinically. if your swallowing and slurred speech are improved and you have less of a problem, then it sounds like you are receiving proper treatment. I put more faith in clinical results than lab values and testing.


For more information:

We drs who think
 

Interesting that he says he puts more value on clinical results than lab results.

I feel that this is the biggest block to getting any kind of dx. If ya fail the lab you fail at being sick. They just can't seem to put 2 and 2 together.

I jokingly asked if my tongue could be EVP'ed.:D Unfortunatly, no. I sure wouldn't like that SFEMG done on my face, or tongue for that matter. It really was a awful test.:eek: Maybe the Tensilon test would be the most reliable after taking pred. Since it only works if you have MG, I haven't read anything about people failing that test to often. Anyone else?

I will be sure to do my homework on this one though. Making sure on how long to wait for blood test, after taking pred.

lois how many years ago where you dx'ed? Were they a neuro? Maybe a older guy that had seen this before?. Just seems that this disease is really not that hard to pin down. Its not like MS, were you have to wait years, after lots of crashes. I mean once you've had a major crash, and its really hard to get back to normal. If your muscle get weak after you climb 3 steps, you can't open a can of coffee, or how about walk 1/2 block without puffing. You think they could run all the test at once, and be done with it. Really, how hard it that? I know there are some people that fail these test as well, but just by looking at the work thats been done on lois and I makes you wonder hah !! Was the testing defective?:rolleyes:

Oh well, will just carry on, thanks everyone, Patricia:)

I guess its rocket science
 

OK I'm giving up on that MG blood test. Again not there.

Dr I saw today said that its probably is negitive and of no use anyway. I told him just because the test is negitive doesn't mean anything. GRRRRR so frustrating. :mad:

I did get him to refer me on to a immuneoligist/allergist. I need help to see if I have other food intolerances. Maybe this guy can help.

I'm begining to regret getting back on the dr merry go round. Oh well least I'm feeling better, just stay away from the drs. stay away from the drs. :D :D

Take care everyone, Patricia :)

Hi, Patricia! Sorry I'm just getting around to giving you a reply. I've been too busy to check my subcribed threads for new posts, and I think I must have overlooked the email notification of this one.
I was diagnosed in the mid-1970's. I went to my GP complaining of feeling tired and fatigued all of the time. He sent me for a sugar test to rule out diabetes or low blood sugar. When that came back normal, he set me up with an MG specialist in Indianapolis. My GP just happened to have another patient with MG, and had suspected MG from the beginning. The specialist diagnosed MG with a positive Tensilon, and varous strength tests, using machines that he had designed and had made to test the fatigability of the muscles. He was an older doctor, actually I think he retired in the 1980's.
How aggravating about the blood test.! Whether positive or negative, you have a right to know the results. And how can he say it was probably negative anyway. Has he seen the results?
Sometimes the ignorance of doctors, especially neuros, astonishes me. :D
Hugs,

Hi Patricia,
Threads like this some times scare the fuzz right off my toes. Prednisone is a very very difficult drug to wean off of. After 7 days the body is addicted/dependant upon it. Please please be careful, and google everything you can on Prednisone and what it can do to your body.
http://www.macalester.edu/psychology...ppression.html
http://prednisone.com/
read these for starter, please take care

Hi everyone
 

Sorry computer related problems last week.

Thank-you all for your concerns, I am doing pretty good, knock on wood :D

I didn't do 7 days of pred, only did 6. This is how I did it. First day I did 25 mgs, then 25, then 25, the I started wiening. So 2 days of 10 then 1 of 5. This worked for me. I'm not indorsing it, but when you don't have a doc to look after you, well you look after yourself. It took me out of the crash, although, I did go out, and the next 3 days back n bed. The last couple of days I've been feeling good, well good as it gets, lest I'm not wasted.

I stopped the mestinon too. I really don't like the way it makes me feel after its worn off. I'm not sure if everyone has the same problems with the stuff, but I really love to hate this drug. Its so up and down. You feel like crap, take a pill get to the 2 hr mark feel good then at 3, I take this big breath and I look at the clock and now I'm going down. Then at 4 hrs I feel worse then when I started, and its a repeat of this. So I try not to take it and just slug around, if you know what I mean. If I'm feeling really bad then ok, but ahhh, hate it. :eek:

Anyhow, I'm waiting patiently now to see this immunolisgist/allergist and I pray that he knows more about proper blood testing. My cousin went to see him and she gave the thumbs-up that he was very good. She was just dx'ed with MS, but they suspect other immune problems.

Thank-you all for your support, Patricia :)

Patricia, I'm glad things went well for you with the Pred. As for your problems with the Mestinon, you might need to take it every 3 hours. How long have you been on Mestinon? I know your body can get adjusted to it to the point that it doesn't work as well any more, and you might need to suspend it for awhile so that it will work well again once you start it back up. Just an idea!!
Hugs,

update
 

Hi everyone. :)

Well I've been through some more testing, and I'm no futher ahead with a dx.

Seen the immunoligist/allergist, and he did tests for food allergies, although I told him that I don't get hives or breathing problems with these foods, he didn't get it. He didn't understand that some foods can cause neuro problems. I was wishing that he was up on this knowledge, unfortunatly we were on different pages. :rolleyes:

I was able to get the MRI of my spine done last week, then off to the dumb neuro. Well nothing, other then I have ostioarthritis of my spine that is normal for a person of my age...........................hmmmmmm I'm 47. Apparently if you take 10 people off the street and MRI there spine it would look like mine. :rolleyes: I have heard those exact words about 5 times from 5 different neuros, must be the first thing they memorize. :D

So the neuro has sent his recomendation that I see a neuro/psychiatrist, because he can't help me. As far as he can tell there is something neurological happening with me, but he has no idea what, or care to look for himself, easier to send me to someone else. :mad:

Anyhow, thats it. No treatment plan, no help on how to stop these crashes, and really fed up with the whole BS. I did go to the gp I'm seeing and asked just to see a psychiatrist, forget the neuro part, as far as I'm concerned the whole lot wasted there money going to school. ;) all they can remember is the first part,.........if ya take 5 people off the street...........................:(

So, this is as all that I can do, there is no more testing for me, I have come to the end of testing for anything. I'm just a mystery and I have to learn to live with this. Which is really a hard pill to swallow, I have sorta learned to live my life slowly, but as for the future, I guess I get to be the old lady before I'm even old. IT SUCKS.............. Patricia

P.S. I've asked this before, hopefully someone can answer it. But has anyone thought that mestinon makes them depressed or grumpy or alter there mood in any way. My gp said that this is true, but I really don't think he knew, I think that that he doesn't want me to take the stuff. I would like to take it, but find that it really screws with my thinking. Thanks, Patricia

Patricia, sorry you've had to have another go round of disappointment. I know exactly how you feel, kind of abandoned by the doctors, which is a bad feeling, considering that they are the ones who are supposed to figure out what is wrong with us and then fix it.
Speaking of Mestinon, I've never found that it affected my mood in any way at all. I do get 'brain fog', but that seems to be a product of the MG rather than the Mestinon. I would think the pred is the more likely culprit to be messing up your mind.
Hope things improve for you.
Hugs,

Thanks lois, but even before I took pred I had this symptom. Its really wierd, maybe its because of the up and down feeling, my mind really hates it.

Patricia, Just thought I would mention this for what it's worth. I've just figured out I'm gluten sensitive. My GP did the blood test for celiac, which I kind of figured I would have, since it's an autoimmune disease, too, and I've already had Graves' Disease, and MG. But it came back negative. But I've been staying faithfully on the gluten free diet, and was amazed to see how much it has helped the MG. Or rather, how much of the fatigue I was ascribing to MG was probably coming from the gluten sensitivity. It might pay you to just try a gluten free diet for a few days to see if it helps you at all, especially if you have any of the symptoms associated with gluten sensitivity.
I'm still elated over the change I got from going gluten free. I hope it lasts for me, since I feel like it is helping me to get a life back!
Hugs,

Thanks lois
 

I'm so glad that you went gluten free :)

I am gluten free 100% for the last 6 months, before that I was just trying to avoid it, I did that for about a year.

This was why I was able to go off the mestinon. I got so much more energy that I could get by without it.

I strongly believe that alot of people that have fatigue problems should try a gluten free diet. Gluten is bad for everyone. :eek:

A good book to read is called Dangerous Grains, I don't remember the author, it was in my local library. Give it a read.

Isn't it great that you can do something as little as changing your diet, and you feel better for it. :)

If you need baking help I have some great recieps. Take care, Patricia :)

And here I thought I was sharing this great new idea, and you're way ahead of me!! :D :Wave-Hello: When did we get the extra smilies? Love 'em!
Hugs,