[stdoubt]

Perhaps it is a silly question, but it has been bothering me for some time...

I was diagnosed with MMNCB about 3 years ago, after symptoms began to become apparent a couple of years prior to that.

My symptoms have been fairly mild so far - I have experienced a very slowly deteriorating loss of function to my right hand (with some very visible muscle atrophy, if you chose to look). I can still type pretty well, and my handwriting is no worse that it has ever been (which doesn't say much, frankly ). I chose not to pursue any treatment at the time of diagnosis, as I felt that the limitations imposed on my by my condition were not worth the risk of a blood borne infection from IVGN. Also, I understood that the treatment may be effective initially, it would not last and would need to be repleated after increasingly shorter durations for the rest of my life.

Recently, I have begun to notice a slight weakness in my left calf, which is causing me to limp a little, and is making strenuous cycling difficult. I am a fairly active person, so this concerns me far more that my hand.

I also have another complication - I am currently living in Australia with my family on a temporary visa, and fully intend to apply for permanent residence in 3 years when I get the opportunity. However, there is a medical test requirement for the visa, and while i have private health cover, so never expect to impose on the public healthcare system, I suspect that should I seek the expensive IVGN treatment, or even confirm my diagnosis in Australia, it may predudice my future visa application.

So I suppose my question is, Is delaying treatment the right thing to do?

I'd like to wait for as long as possible, not only because of the visa requirement (and plausible deniability ), but also because it seems to me that I should carry on for as long as possible without treatment, so that if my symptoms do progress to a far more debilitating state, I can try IVGN for the first time and expect a much greater result when I really need it than now when the MMN is a minor inconvenience.

Thanks,
Nigel

[nide44]

Originally Posted by stdoubt

Perhaps it is a silly question, but it has been bothering me for some time...

I was diagnosed with MMNCB about 3 years ago, after symptoms began to become apparent a couple of years prior to that......................So I suppose my question is, Is delaying treatment the right thing to do? ..............I can try IVGN for the first time and expect a much greater result when I really need it than now when the MMN is a minor inconvenience.

Luv ta help ya, mate..... but whatheheck is MMNCB ?
Nevver hearda it. Gotta help me out here.

[daniella]

I think your body is showing signs and you need to go to the doctor and maybe get a few opinions if there are risks to the treatment. I have no idea what your dx is but for many dx prompt treatment is key. As for the visa listen your health is number one and if you have severe health issues little else matters. As for waiting I would really look at why you want to wait and see by the doctors if that is the appropriate thing to do. With some health issues it may be but for some it may make things worse.

[glenntaj]

--multifocal motor neuropathy with conduction block (although, to be truthful, I've not heard of any autoimmune syndrome labelled multifocal motor neuropathy that did not involve conduction block--it's sort of characteristic, electromyographically, of the syndrome).

And, it would seem prudent to pursue immune modulating therapies if the syndrome has become noticably symptomatic, as early intervention seems to work better than later:

http://neuromuscular.wustl.edu/antib...imdem.html#mmn

[dahlek]

To check it out...all the symptoms, diagnosis tests and treatments. I know many folks who have MMN who respond very well to IVIG but don't require it every month...some 2-3 months, some more often. And, depending on the type of neuropathy it is....other therapies seem to help for some folks.
Better to get it checked out while you are covered under insurance! I know that some folks from down under have had beastly times working thru their health system to get diagnosis and treatments.
As for any affect/effect on a permanent residency status? Gee, dunno...here I'd suggest seeing an immigration type attorney or the like-they mite have more insight about such things. Better to know beforehand what you mite be getting into before comitting one way or the other for the long term.
DO check things out tho! Overall your health will be better for it and you might be able to forestall additional weaknesses. That is the goal, isn't it?
Good thoughts and hopes - j

[Lorelei]

Seek help immediately...the sooner you are treated the better your results...leaving it for any reason is a HUGE mistake...I left mine a year after my diagnosis,( i was in complete denile). My MMN is not severe at all, and i regret waiting in ways this world will never understand. ...Please get treatment ASAP..

Originally Posted by stdoubt

Perhaps it is a silly question, but it has been bothering me for some time...

I was diagnosed with MMNCB about 3 years ago, after symptoms began to become apparent a couple of years prior to that.

My symptoms have been fairly mild so far - I have experienced a very slowly deteriorating loss of function to my right hand (with some very visible muscle atrophy, if you chose to look). I can still type pretty well, and my handwriting is no worse that it has ever been (which doesn't say much, frankly ). I chose not to pursue any treatment at the time of diagnosis, as I felt that the limitations imposed on my by my condition were not worth the risk of a blood borne infection from IVGN. Also, I understood that the treatment may be effective initially, it would not last and would need to be repleated after increasingly shorter durations for the rest of my life.

Recently, I have begun to notice a slight weakness in my left calf, which is causing me to limp a little, and is making strenuous cycling difficult. I am a fairly active person, so this concerns me far more that my hand.

I also have another complication - I am currently living in Australia with my family on a temporary visa, and fully intend to apply for permanent residence in 3 years when I get the opportunity. However, there is a medical test requirement for the visa, and while i have private health cover, so never expect to impose on the public healthcare system, I suspect that should I seek the expensive IVGN treatment, or even confirm my diagnosis in Australia, it may predudice my future visa application.

So I suppose my question is, Is delaying treatment the right thing to do?

I'd like to wait for as long as possible, not only because of the visa requirement (and plausible deniability ), but also because it seems to me that I should carry on for as long as possible without treatment, so that if my symptoms do progress to a far more debilitating state, I can try IVGN for the first time and expect a much greater result when I really need it than now when the MMN is a minor inconvenience.

Thanks,
Nigel