an internet site, even if full of knowledgable and supportive people can not replace a physician, when there is a true medical problem.

people here can give support, general advice, share their knowledge and experience, but can't give you tests, perscriptions for medications or hospitalize you if you need more urgent care.

there is a limit to what you can gain from trying OTC medications, without proper follow up by an experienced physician that can differentiate between the normal fluctuations of this illness and reall response. there is a limit to what you can gain from knowing which tests should be done, without actually having them done.

a patient with lymphoma, like tommusic is not going to recover from his illness without recieving chemotherapy. he can get a lot of empathy from people on this forum, but what he needs at this point is proper medical care.

MG even if it appears as a much more ellusive illness, is not different in that sense. if a patient requires plasmapharesis- this is what he/she need to get. no degree of "positive approach" or emotional support can come in place of that.

alice

I am sorry if I have offended in some way. I am trying my best to work within the system. My appt with my GP is in 3 weeks time ( earliest available) and she can write a special request to Neuro for an early appt that would be late March or April. This is the system here. I am only one person and very weak and cannot fight it. My appt for Neuro is 6 months away. I pay thousands and pay private - but this is the system.

Last night my breathing was bad so I slept the night in a chair. Today I have been weak and feverish but feel that I may be turning the corner tonight.

The local A & E is a "bush' hospital so unless I actually collapse - there is nothing anyone can do here. I am watching for signs of an infection.

I have had this type of problem happen very often for many years. I just assumed it was me.My earliest pneumonia was Xmas Eve when I was 12. It was called a virus. I was given erythromycin and was very ill for 6 weeks.

Perhaps I should just focus on the treatment and forget about Neuros and diagnosis. They did not help my auntie 40 years ago and she lingered 30 years to her death. I anticipate the same for me. MG is not understood and never will be.

I may try for genetic testing though - as this is the future and may help someone else.

what I was trying to say, is that you need proper treatment.

even if you have some type of progressive neuromuscular disease, there is supportive treatment that you can probably recieve.

maybe you will have an excellent response to mestinon.

sometimes if you try to be nice and not bother your physician too much, you end up being seen as doing much better then you really are.

I have learned that the hard way.

you are right that I don't know the system in australia, but I have heard similar stories in places where I know the system very well.

I really want to see a physician any where in the world tell a patient with chest pain and signs of cardiac ischemia on a stress test, that he can go home, and come back to the ER only if he has an acute myocardial infarction and is on the verge of dying.

but I can tell you that a very prestigious neurologist had no problem ignoring a letter written by a pulmonologist stating that the patient has rec. acute respiratory failure, and needs in his oppinion emergent plasmapharesis.

I have the letter right here in front of me- dated dec. 18 2007.

dg: rec. acute resp. failure, neuromuscular disease of unkonwn etiology.

over the last few weeks there have been multiple episodes of severe respiratory compromise, accompnied by extreme generalized weakness.

in my oppinion she requires emergent plasmapharesis, and I recomend that she takes a leave of abscence from her work meanwhile.

will follow MIP/MEP at home. needs emergent sleep study and possibly NIV.



and this in an excerpt from the letter I recieved from that neurologist, after I told him that I want to find someone else in the world that may be able to help, if he has decided to give up on me.

this 46 year old physician was followed by me for the last 3 years due to rec. episodes of weakness and shortness of breath. one time she was admited to the ICU of her own hospital because of an episode of severe breathing difficulties... all her studies were completely normal . her neurological examination was always normal. SFEMG was repeatedly normal...despite treatment with plasmapharesis, steroids, IVIG, she continued to have episodes of generalized weakness, shortness of breath and ptosis. .. I thought that a psychological component was involved and referred her to hypnosis therapy. ... she came to see me after a year, because of increased generalized weakness and shortness of breath. respiratory function studies in her hospital showed worsening of her respiratory muscle strength. neurological examination was completely normal.

it took me six months and mutiple e-mails that we sent to neruologists around the world to find someone that was ready to see me for consultation. most, after reading this letter understood quite clearly what my illness is, and didn't even want to bother dealing with me, after recieving this letter.

and you are wrong if you think that this person was eventually much different.

he told me forinstance that I feel the steroids are making my illness much worse, but he knows that this is impossible, and I am actually much better, almost in complete remission. as a SFEMG done at a time of severe generalized weakness and respiratory difficulties was completely normal.

and those episodes of severe generalized weakness and respiratory difficulties that require respiratory support are due to "emotional problems".

he also made sure that another neurologist I consulted, by his advice, will fully understand what he thinks. and write to me that I am in the best of hands under his care, and that he has nothing more to offer.

and I am just giving you a very small glimpse of what I have been through over the last 4 years.

but we have no choice. we are ill. the people that diagnose and take care of this illness are neurologists.

in order to recieve something that resembles reasonable management. I have had to consult 10 neuorlogist and the same number of pulmonologists.

I could have stopped many times along the way, and have the fate that you describe of you aunt.

but I didn't. and am not going to.

I knew very well that it is either fighting what seemed at times an impossible war against wind mills and dragons at the same time, or ending up in a nursing home, fully dependent on others.


although I did promiise myself that no one is ever going to humiliate me or endager my life again, due to this illness, after the last time I was offered antidepressants for my worsening respiratory symptoms.

and I have so far been able to keep this promise to myself.

alice

Geez, Alice, I think Xanadu knows she needs proper treatment! It's getting doctors down under to "realize it" and help her too.

A doctor might consider sublingual methylcobalamin to be "alternative therapy" but without it I would get another B12 deficiency. There are a lot of adjunct therapies to conventional therapies that work. Including laughter and prayer. And if I had cancer, I would pull out all the stops - including chemo - to make sure it didn't get worse (which I'm sure Tom is doing).

Xanadu, I started this thread for you because you do need help. And now you sound like you are sick too, for which you absolutely need a doctor right away. I'm sorry you live so far away from a clinic. Not good. But that's your reality and only you can decide what to do.

You did nothing wrong, so please don't think you did. You don't need guilt on top of feeling horrible.

Erythromycin is one of the antibiotics that can make MG much worse. I took one dose of it and had choking/swallowing problems.

Maybe Patty can help you find a neuro that is good. Anyone else in Australia who can help?!!

I hope you will feel better soon and get the care you need.


Annie

Annie,

the point I was trying to make (and maybe I sounded too harsh, and sorry about that) is that based on my personal statistics 1/10 neuros (give or take) is capable of truly understanding this illness (at least to some extent) and 2/10 pulmonoloigsts can actually manage a patient with neruomuscular respiratory symtpoms ( I mean not just diagnose, but actually treat, adjust respirators etc.).

this as opposed to 10/10 hemato-oncologists can manage a patient with lymphoma, for instance; etc.

now, its a matter of luck if you are going to "land" on the proper neuro as your first, second, third or tenth ( or possibly even more) and the same applies for your pulmonologist.

and if you stop searching, or think that you can convince your neuro to be different, then you may never find that one.

and by the way getting a recomendation for a neuro from someone who is a classical seropositive, is quite useless, because it will give you no info. of how he treats seronegative patients. and the neruo stasticts are probably somewhat different and much better if you are seropositive.

alice

and by the way getting a recomendation for a neuro from someone who is a classical seropositive, is quite useless, because it will give you no info. of how he treats seronegative patients. and the neruo stasticts are probably somewhat different and much better if you are seropositive.

alice[/QUOTE]

Well I'm seropositive and I've been through 7 neurologists and still with no help. Nobody seems to care about helping but I still get charged thousands and thousands and thousands of dollars. I'm beginning to think it would be wiser just to give up on getting help and let this thing run its natural course.

Xanadu, it sounds like you're in a very difficult position. I don't have any advice to give you but I wanted to let you know I understand your fear and your frustration.

Ally

I wish that you lived in Toronto, Canada! Well, I'm not sure how it might work if a person is seronegative, but my MG specialist truly is a specialist! She's an expert at SFEMG and you'd prolly get a diagnosis even if it were negative as she truly knows her stuff, and the complexies and variation of MG.

When I go for plasma exchanges, I see plenty of others with MG. The muscle complaints are so variable, but I haven't seen a person yet who has trouble with respiratory muscles or even bulbar issues (I'm the only one so far). Most of the others I've seen have some ptosis, but mainly I see people with limb weakness. No one has had near-paralysis that I've seen. To me, it just goes to show how willing my doc. is to go the 'extra mile' in terms of treating people with MG as usually, at least from what I've heard, plasmapheresis is reserved for people with bulbar/respiratory issues- or as a last-ditch effort to get these symptoms under control. My doc. seems to treat people with this procedure if there is any weakness that is resistant to standard treatments (as long as it's not more dangerous for them to get it). IViG is also given regularly.

There's a specialist in London, Ontario who might be a bit more well-rounded in terms knowledge of all the types of MG. I'm sure that if you saw him, you'd almost certainly get a diagnosis (if it is CMS, which it sounds like it is). People don't seem to leave his office without a proper diagnosis. There was a woman here who initially was thought to have had MG, but it turns out that she has Myotonic Muscular dystrophy. That one can be difficult to diagnose because it presents with so many varied symptoms, sometimes mild, sometimes severe, sometimes all the signs, sometimes only a few. Bottom line is that patients are believed- this is occam's razor- I wish all docs utilized this logic when patients present to them; sometime's a zebra is the most logical, simple answer if that's what the signs demonstrate.

I wish you luck and sorry that you're having a difficult time- someone will figure things out for you- just don't give up!

Nicky

Thanks everyone. I am sorry if I sounded a bit grumpy. I am just fed up with the whole process I guess. As time ticks on ( into 4th year now) I can feel it getting harder and harder to do the 1000s of miles of travel, book into hotels on my own etc and see all these diff Neuros - waiting for the magical 'one' that will be able to help. If I am CMS or seronegative or lack visible ocular symptoms - it is going to be almost impossible. So far I have only had one EMG in 4 years ... and have never had a SFEMG. 14 months ago I was bounced away from a MG clinic in Sydney and told to go back to my home city as 'surely someone there can do SFEMG'. I spent 1000s and had a 5 min consult. I realise now I should have thrown a tantrum/laid on floor screaming and kicking ...until they did it for me right then and there. 14 months later ... the local city Neuro 'can't see anything wrong/ any reason to do EMG/SFEMG '. Obviously I will have to move on from this but it -is-so tiring... I am being rubber stamped as a hypochondriac ( or worse) and once that is on your file - you may as well move to another country!!! Even this last episode of choking is not being documented and will be hoo haaed when I eventually get to the Neuro.

I suspect this Neuro and my previous have only worked with AChr MG before as he talked of Predniolone but little else. He screamed at me for even suggesting a trial of Mestinon. I realise it could be dangerous but so is choking !

I have just heard news that a great aunt was dx with Parkinsons and declined from age 50 to 80. I may be adding this up wrong but it all looks a little suspicious ? 40 years ago it could be that Parkinsons and MG were confused ? So this now is the 3 generations - on female line - and showing in females of a 'muscle disease'... CMS is looking more likely but do any Neuros know about that here ?

The cough is just a dry cough and lung is just a bit restricted. Few jabbing pains in rib cage I am more worried about. May see local GP yet - just to be sure. I don't think I have an infection. This is the 3rd time this has happened now in 6 months ... poor old lungs!

Just a quick update. Have been a bit yukky for a few days now. Lung pain and slightly feverish. No real cough but sometimes. Last night again I had to sleep in a chair... but today have been better again. ( the sleep in the chair was the best I have had in months ..wow ..this must be what normal people sleep like ! ) It felt weird to wake up feeling good. The weird thing with the lung pain is that it shifts around. Hubbie seems to think that means its something else like a pinched nerve? Although it seems odd to me that it has happened after the choke.

Well, that lung "pain" isn't normal and without an x-ray, you can't tell for sure what's going on. Do you have any kind of basic clinic close by? If so, please go in!!! If it is aspiration pneumonia, only an antibiotic and possibly an inhaler will help. Okay?!!!!

Annie