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