Hope I'm on the right track this time
 

Hi all

I'm a 60+ grandmother living in Queensland, Australia

Have looked at this site previously as I thought I might hav MS, but didn't join at that time.

Saw a neurologist on March 2. Sent me for an MRI which showed no demyelination so I was told to come back in six months time.

As I was still feeling really ill I asked my referring doctor for a referral to another neurologist. Saw her (Neuro) on Thursday still convinved that I have MS. She also told me that there were no signs of MS on the MRI.

I was feeling rather upset because I felt there is definitely something wrong with me. It wasn't until she started examining my eyes and noticed that I have a droopy right eyelid that her manner changed and she asked me to have a blood test and to call her in 2 weeks time as it would take that long for the results to come back from Sydney. The neuro is in Brisbane.




The tests she asked for said ACHr Ab and CK. As I didn't know what the first one stood for; but I knew that CK was for creatine kinase, so I did a search for creatine kinase and found that the other test is for Acetylcholine receptor antibodies.

Acetylcholine receptor antibodies are found in myasthenia gravis and apart from the fact that I also have muscle pain, my other sypmtoms also fit.
Have since found out that a medication I was taking for the Chronic Fatigue I thought I had is contra-indicated in MG and causes the muscle pain.

There are other medications that I have had problems with in the past and I discovered that they are no-nos in MG.

I would have had aneven droopier left eylid except for the fact that I had it reduced some years ago but no-one ever thought to ask why it had drooped and it is actually starting to droop slightly again now.


That's all from me for now

Regards
cinusti

Cinusti,
Can I relate to your story!
My doctors insisted that I had fibromyalgia and treated me with all kinds of muscle relaxants, narcotics, and antidepressants. At one point, when I was having breathing problems, the ER treated me for a heart attack! (with nitroglycerin and Ativan) even after I told them what was wrong with me. I gave each medication one week to improve my symptoms and then threw it away. I wouldn't take the narcotics at all. It was bad enough to be weak, let alone asleep.
I hope you get the diagnosis and medication you REALLY need now. I was just diagnosed on Tuesday, but I knew what was wrong with me for 13 months. I just couldn't get any doctor to listen. I had to travel 3 hours to a doctor that is supposed to be one of the best around. He certainly is to me! Anyway, good luck to you and keep us posted on your progress!
Kathy

Cinusti, let's hope this new neuro is on the right track. MG can be really, really difficult to diagnose, especially if one is sero-negative. I wouldn't wish MG on anyone, but I know you will be relieved to get some kind of a diagnosis. It is so hard being in diagnosis limbo. Keep us posted on what the results are.
Hugs,

Hi,
Yes it is true that it's hard to get diagnosed. Doctors are afraid to give the diagnoses unless it's black and white to them, and other doctors.



From what I understood, most doctors don't want to give such harsh drugs to patients, if there is a possibility it's not mg. Once a person goes down that road, it's so hard to turn it all around. And then there's the law suits.

I also learned that the antibodies, can show up on one blood test, and then down the road, not show up, causing further confusing. Just about every test out there for mg can be negative, and you still have mg. So it can get very frustrating for both doctor and patent. Please hang in there, they'l figure it out.
But first you must find a specailist who knows what they're talking about. You may want to see a Neuro muscular specailist. Maybe call your local MDA office and ask, or go to the Myasthenia Gravis association,and ask them how to find a good doctor.
Don't forget to watch the mg conference on line next month. You'll learn so much, I know I did last year.
Oh, and by the way...welcome
love lizzie

p.s please read what littlewish and i wrote about prednisone too, and read as much about "all" the drugs that treat mg. educate yourself as much as possible, it's so important

JUst had word from neuro thatthe blood test results were negative. And it wasn't the eyelid droop that she noticed but something in the results of blood tests that I'd had a week earlier had caught her eye.

So now she says that I do not have MG and to go back to my usual doctor and get more tests done for other problems.

I asked her about the eyedroop and she suggested I go see a neuro-opthamologist so I'm off to get a referral this afternoon.

I have done the ice test on my eye and the eyelid went up by about 2mm and then drooped again.

When I mentioned the episode below to her she said that this does not happen in MG

I visited my daughter in hospital in Brisbane Australia on 24th January this year. The weather had been hot and humid and I found myself almost unable to walk and out of breath when I went back to the car which was parked about 400 metres away from the hospital.

If the car was hadn't been airconditioned, I don't think I would have been able to drive back home.


Beginning to feel rather frustated.

cinusti

Don't give up, cinusti! You are just running into something just about every one of us has experienced, the fact that MG is VERY dificult to diagnose, and that most neuros don't know much more than what they were taught in school about it, info which is quite often very out of date. There are neuro's who specialize in MG, but actually, if you are being referred to a neuro-ophtalmologist, that may be your best bet. They are sometimes the first to diagnose MG in someone who has mostly optical symptoms.
And as for the heat having caused more fatigue, if you DO have MG, that is exactly the symptom you would have expected. Check any web site with info on MG, and heat is always listed as one of the things that can make it worse.
Hugs,

Hi Cinusti -
Your story sounds so familiar - as others have said, getting a diagnosis is so difficult. I have had negative and positive AChR antibody tests. There are actually different blood tests that they do - the first one is usually for binding (the antibodies bind to the receptor sites for acetycholine and prevent it from getting to where it needs to go) - there are two other AChR antibodies that they test for - modulating and blocking. You may want to find out if they did the full test or just the binding. There are also other antibodies that they can test for (MuSK antibodies) that some people who test negative for AChR have. Maybe they need to do a few more things before just ruling it out. Don't give up. I have posted a link to an article that may explain the antibody tests more clearly. - Gabe

http://www.nature.com/nm/journal/v7/...m0301_365.html

Hi All

Saw the neuro-opthamologist on April 5. Again a bit of a disappointment as his office is airconditioned and I had been in there almost an hour by the time he did the ice test on my eye. The ice test was negative. He also states that facial power is intact, that in spite of the fact that I can no longer whistle and chewing gum and talking for any length of time made my jaw ache.

I wish doctors would realise that when we are in a temperature of less than 24 degrees centigrade and sitting fairly idle for nearly an hour, we are not going to manifest too many MG symptoms.

Below is the last paragraph from the report he sent back to my husband's GP whom I was seeing as my GP was away. The opthamologist actually asked him to trial me on Mestinon buthe didn't want to, only gave me a referral back to the first neurologist for EMG test which I am having done on Monday April 30.

She has evidence of upper right lid ptosis. The findings are not consistent with myasthenia gravis however I have advised her that this condition can be difficult to exclude. I would not recommend intervention regarding the lid ptosis until a diagnosis is made or the lid status remains stable. I have suggested consideration for EMG studies if these have not been undertaken and consideration of a trial of pyridostigmine. However these factors may already have been considered by the neurologists.

When my GP came back I went to see him as I didn't think I would be able to cope until I had the EMG done, and he decided to trial me on Mestinon 10mg 2times a day. I am now taking 30mg twice a day

That nearly 2 weeks ago, then had trouble sourcing the tablets until I managed to find some a couple of days later at a pharmacy in Brisbane some 120km away. Anyway within 30 minutes of taking a tablet I was able to walk briskly back to the car.

I have read that Mestinon should be stopped before an EMG test and I wonder when I should stop taking it? Is there anything else I can do beforehand to make sure that I get a positive result this time.

Regards
cinusti

Hi Cinusti
 

Sorry that your having a time getting dx'ed.

I'm sorta in the same boat as you. I haven't been dx'ed either but have had some test done. First I had the MG blood test, and it came back borderline. I was then tested again almost a year later and the results were lost.
At the time of blood testing I had the EMG and the SFEMG done. This test wasn't performed properly and the neuro said that she didn't think I had MG but gave me Mestinon anyway. It worked wonders.

The reason that I had to write this is that all the test I had were done wrong. And it really ticks me when the drs then say well the test was negitive so they won't continue to look any further.

So before you have that EMG done make sure that you hang around outside espeacially if its hot out. Make yourself as tired as possiable, exercise, go up stairs if you can.
The muscle that they tested me were the ankle, really dumb since my ankle isn't even weak. Then they EMG my hand, not that weak.

I think the reason that they chose these spots is because they give the muscle a shock, first mild then stronger and I won't lie and say it didn't hurt, becuase it really smarted. :eek:
The best test to get if your going to get shocked is the SFEMG. With this test they stick a needle which is attached to a wire into the muscle. If they can stick it into the eye area were your eye is sagging, that might be your best bet.
I've read about these test and it says that, the muscle is to be warmed and exercised.

I hope this helps you and that a dx is in your future, not that MG is great to have, but just having a answer to your problems makes eveyone feel better.
Take care, Patricia :)

Hi, cinusti! Yes, the Mestinon can affect the test results. You definitely need to be off it. I don't remember exactly how long, maybe someone else does, but perhaps a couple of days off, to be safe. Plus the day before your test, do everything you can to really exhaust yourself. You want to go in there as tired as possible. And anything you can do to tire yourself out while waiting to be called back for the test will help.
The ophthalmologist is definitely not ruling out MG. If he didn't think it was a possibility, he probably wouldn't have recommended a trial of Mestinon.
Keep us posted on the results of all this. Hope you get a diagnosis!
Hugs,