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Willow

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Hi, I am still in a state of limbo with what is wrong with me but my GP has agreed that maybe trying IVIg treatments would either help or at least eliminate more conditions. I will be seeing a neurologist this week in regards to possibly recieving these treatments. It isn't a given that they will or not. I am just looking for more information in regards to this and MMN.
Thanks for any insight you can offer.
 

Peg B

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Hi Willow,

I just want to make you aware if you are not already that IVIG is very expensive, to 10,000 dollars or more for each infusion. I know they give it in Canada and your health system is different than ours in the U.S but I don't know how it would work financially for you. I assume you have read the our discussion of side effects, but I was not sure if you knew about the cost. I hope you get your DX soon. The unknown is difficult for most of us. If you have any specific questions/concerns don't hesitate to ask. Take Good Care, Peg
 

laurel

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Hi Willow and Peg,
In Canada, the Canadian Blood Services provides IVIG to all Canadians. However, a patient must fulfill all of the diagnostic criteria of the disease that is deemed treatable by IVIG. I know in British Columbia each major hospital has an IVIG committee that oversees IVIG to ensure that doctors aren't prescribing it unless the criteria are met. We had somewhat of a battle over IVIG due to the careful cost monitoring. Doctors are encouraged to go with the less expensive treatments such as corticosteroids and immunosuppressants such as Immuran and Cellcept as quickly as feasible--this optimally will lessen the amount of IVIG required. So far so good as my husband responded well to it and has been on it for a year and a half now. Cost is the same in Canada--about $80-$90 a Gram. Hubby receives 112 G. monthly-- so the cost is around $8000 monthly plus the nursing costs.
Laurel
 

Al

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In Ontario, they asked if I wanted it. Said yes. Two weeks later got 2- 8 hour infusions and the next week got a reaction so never got more. Have no idea what it cost. They didn't say but said everything was covered.

AL.
 

Willow

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Thanks for the responses, I do appreciate it. It is my understanding that if the neuro feels this is a viable option then it would be covered by our medicare system. There is a criteria to be met and that is why I am meeting with him. I am not sure that I would meet the criteria as it seems mine is rather complex situation and I don't seem to "fit" into any one area. I did read the threads here about the treatments and it seems, like everything else, that there are varied reactions and treatment plans but it has given me a bit of insight.
Thanks again and I will let you know how I make out.
 

Willow

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The IVIg treatments are not an option for my condition. I have no conduction block at all. He would caution against even the steroid option at this time because of no diagnosis. In some ways this is sad because I had hoped this may be a treatable thing...on the other hand we have now ruled out MMN. I really don't have many options left at this point. We are now back to neurologists who say this is myopathic and some who say no neuorgenic. I am stuck in the middle not knowing what to do and who to turn to. I have been given the option again of being "sent to whom ever I feel" which is quite laughable because I have not a clue....this is not something I have any knowledge of other than my symptoms, yet the highest and more regular neurologusts have offered this to me because they are stumped. THEY are stumped...so where does that leave me. Sorry...feeling a quite low right now and venting a bit....so very tired of all this after almost 3 yrs.
So what the heck do I do now? It isn't as though you can google top neurologists in Canada? How can I be that different? Right now this is left with this neurologist sending me back to Montreal at some time.
WHY oh WHY can't they find an answer.
At this point what else can anybody think of to rule out? Believe me when I say the specialists have turned to ME to seek out a more knowledgable source....I will take ANYONES opinion to give a sliver of hope.
I know I am sounding a bit angry and frustrated right now....I am sorry..but tha is how I feel. I thank all of you so much for the insight you have given. It is appreciated I am just feeling quite low right now.
P.S. YES for those wondering I have been photographed and documented for other "specialists" to have a go at.
 

CindyM

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I am sorry, Willow. No wonder you are discouraged! It is a lot to deal with. I hope you feel better, emotionally, soon.
 

Willow

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Thanks Cindy...I appreciate the thoughts. Just very tired.
 

Al

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Ontario is nice in the spring. You might want to check out Dr. Strong in London or Dr. Zinman at Sunnybrook. Turnbull at Mac is supposed to be top notch as well but I personally don't know much about him. I go to Zinman.

AL.
 

Willow

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Thanks all...I really do appreciate your good thoughts and ideas. Been a bad afternoon. Al....I would really appreciate some more info. Way back when this first started my GP opted for Ontario over Montreal but the neuros wanted Montreal instead. That is what they are again suggesting but maybe it is time for Ontario. If you wouldn't mind pming me more info as to full names and hospitals I would appreciate it. My GP has already called me so he knows about the MMN being off the table.
Thanks so much again folks...I know I am not one to post often so I do appreciate very much the support.
Willow
 

laurel

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Hi Willow,
Sorry that things are so uncertain for sure. I was just googling MMN without conduction blocks, and surprisingly there is a fair bit of info. One report said, "BACKGROUND: Conduction block is considered an essential finding for the distinction between motor neuropathies and lower motor neuron disorders. Only a small number of reports describe patients with multifocal motor neuropathies who lack overt conduction block, although in these cases other features of demyelination still suggest the presence of a demyelinating disorder. In contrast, a purely axonal multifocal motor neuropathy has not been described. METHODS: This report describes nine patients with slowly or nonprogressive multifocal motor neuropathies who had purely axonal electrodiagnostic features. RESULTS: GM1 antibodies titers were normal in all nine cases. Six patients were treated with either prednisone or IV immunoglobulin and three showed convincing improvement. CONCLUSIONS: These findings suggest an immune-mediated motor neuropathy with axonal electrophysiologic features that appears to be distinct from both multifocal motor neuropathy and established motor neuron disorders."

Another article went on to query whether there are two different types of MMN i.e. One with conduction blocks and one without blocks, and concluded IVIG worked for both. It says, "Assess if multifocal motor neuropathy (MMN) with and MMN without conduction block (CB) are similar or distinct diseases. METHODS: The authors reviewed the clinical features and responses to IV immunoglobulin (IVIg) treatment of patients with MMN with and without CB at diagnosis, after 4 years of follow-up and at the last examination. They included all patients showing clinical features of MMN who had been followed for at least 4 years: All had asymmetric purely motor weakness with a peripheral nerve distribution, without any sensory, bulbar, or respiratory signs and without any upper motor neuron involvement. RESULTS: Twenty patients had CB and 13 had no CB. Median follow-up time was 7 years. There were no differences between the two groups in term of age, sex, time from onset to diagnosis, anti-GM1 antibody titers, or CSF data. Nerve distribution, number of affected limb regions, predominant weakness in distal upper extremities, asymmetric weakness, cramps, fasciculations, and Medical Research Council sum-scores in upper and lower limbs were comparable at diagnosis, 4 years of follow-up, and last examination. Few significant differences were observed. Involvement of median nerve was less frequent at 4 years of follow-up (14/20 vs 4/13; p = 0.027) and at the last examination (17/20 vs 5/13; p = 0.009) in patients without CB. Proximal weakness was less frequent in patients with MMN without CB at the last examination (7/20 vs 0/13; p = 0.027). Fewer nerves were involved in patients without CB at the last examination (4.5 vs 2; p = 0.04). Efficacy of IVIg was similar in MNN patients without CB (8/13) and with CB (14/20; p > 0.05). CONCLUSION: After a median follow-up time of 7 years, patients with and without conduction block showed similar clinical features and a similar response to IV immunoglobulin treatment.

PMID: 16924010 [PubMed - indexed for MEDLINE]

Related Articles

* Multifocal motor neuropathy: clinical and immunological features and response to IVIg in relation to the presence and degree of motor conduction block. [J Neurol Neurosurg Psychiatry. 2002]
* Multifocal motor neuropathy: the diagnostic spectrum and response to treatment. [Neurology. 2007]
* [Multifocal motor neuropathy: a retrospective study of the response to high-dose intravenous immunoglobulin (IVIg) and current perspectives for diagnosis and treatment] [Bull Acad Natl Med. 2007]

Sounds like yet another opinion is indeed warranted. I would trust Al's recommendation.
Laurel
PS I would be interested in reading your story and symptoms if you have the energy to tell us.
 

laurel

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Willow,
I just read through all your postings so I do have a picture of your history and symptoms--so you can ignore my PS.
Laurel
 

Zaphoon

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Laurel,

Thanks for posting that article on MMN with and without CB. I found it fascinating! Aricles like this seem to point out the complexities and time it can take to sort through these kind of maladies.

As tough as it may be, sometimes you just have to keep hanging in there and sooner or later, the disease/disorder will present enough of itself to have a label placed on it.

I'm better prepared for the long haul after reading posts like this.

Zaphoon
 

laurel

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You're welcome Kim. The more a person reads the more apparent it becomes that nobody fits neatly into any diagnosis. I find it overwhelming at times some of the lack of knowledge that even the top neuro's have. i.e. my husband has lots of fatigue and the brain fog symptoms. When he reported this to his neuro, she said "Oh that's not CIDP. It has to be something else." Yet if she read the CIDP forum, she would she that fatigue and that mental fog is a huge problem for perhaps 75% of the people with CIDP. I think that so many are true academic nerds and totally out of touch with talking to their patients about what is occurring for them.
Laurel
 

Willow

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Thanks Laurel for all the info you found. There certainly are so many variables to all of these diseases. Glad you were able to read through my posts to get an idea of my symptoms.
 
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