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Neuromuscular In memory of Rose Marie.

Anyone have Multifocal Motor Neuropathy ??

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Unread 01-23-2013, 11:57 AM   #71
twitchyfirefly
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Originally Posted by tonyporter456@ View Post
hi,i dont want scare you but i had the treatment in 2007 and the treatment was ok for a while but i started haveing areaction my skin on my feet and hands peeled and cracked ,the treatment stoped and recoverd after months.but i was just one in thousands.
Usually if someone has an allergic reaction to IVIg they try a different brand. Some people take prednisone or some other anti-allergy medication prior to infusions to prevent this (I don't do prednisone because it can worsen MMN sometimes.)
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Unread 01-23-2013, 12:15 PM   #72
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Default Neuropathy Support Formula; Deanna Protocol; ketones

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Originally Posted by tonyporter456@ View Post
hi ,looking over the net i found a site claiming a wonder supplement that helps with all types of neuropathys,the name is neuropathy treatment group from IDAHO in u s a anyone know anything about this vitimins formula
This might be the same Neuropathy Support Formula discussed elsewhere in Neurotalk, for instance at http://neurotalk.psychcentral.com/sh...upport+formula

I looked that product up and tried to order some but was unsuccessful due to their flaky web site; however, having found out what's in it, I adjusted my supplements to include some of theirs. I should say that I confirmed their possible helpfulness with independent research, including many helpful posts by Mrs. D, a frequent contributor on Neurotalk.

There's also an interesting site called Winning The Fight (google it) which promotes a list of supplements for ALS; again, many components agree with my research. An additional one is a ketone ester. I've been on a ketogenic diet for two years now because ketones have so many neuroprotective (among other beneficial) effects. A ketogenic diet is very high-fat, low-carb; it's been used for 90 years to treat (and cure) pediatric epilepsy. While there is a lot of basic research (mostly with rats and mice) going on in investigating ketones' effects on things like Alzheimer's, Parkinson's, ALS, and other neuropathies, this is the first site I've run across that is encouraging people to actually try it.

There's a lengthy discussion about this Deanna Protocol in the ALS TDI forum (again, google it, as we can't post links), some hopeful, some hostile. You do have to be VERY skeptical with these things. One good thing about Winning The Fight is that they don't appear to be selling anything, unlike the Neuropathy Support Formula people.

Also keep in mind two other things:
1. Don't make the common error of mistaking correlation with causality;
2. Dietary or supplement treatments can take a LONG time to manifest. In the case of KD and epilepsy, it generally takes two years if a cure happens, though lessening of seizures happens fairly quickly.
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Unread 03-20-2013, 10:23 PM   #73
Maria williams
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Originally Posted by crstr View Post
I have been on ivig every other week since January 2010. I am noticing less cramping but the weakness seems to have started increasing. This is the first time I have read about it in posts and I thought..wow...is this happening to others or have I just missed it before now?...
Hello Christine,
I have been diagnosed with MMN Jan. 2010. The doctor also gave me IVIG and after the first dose, (of two.) I got AMS, (Aseptic Meningitis Syndrome.) 4 month later, the doctor suggested a different brand of IVIG, given over 5 days, 20% each day. After the 3rd dose, I got AMS again.
A different doctor, advised by my first neurologist, prescribed, Hizentra, given subcutaneously, at home.

I started, 7 days of 3 grams, (15ml) 2x a day, the first week, then 2x a day, twice a week. I did we'll on it, but after 8 month the doctor up't the Hizentra to twice a day, 3x a week. And since October of 2012, he up't the Hizentra to 4x a week, twice a day. I live in Michigan and go to U of M. The doctor now is advising for me to consider Rituxan. I also have a a elevated protein in my blood.

The Hematologist and the Neurologist think MMN and this elevated Protein may be related, not sure however. It seems the Hizentra works well, but need more as time goes on. It is also very expensive, my insurance and Medicare pays most of it. I am worried trying Rituxan since I could not tolerate IVIG. Would like to hear from you and others?
Maria
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Unread 04-29-2013, 03:24 AM   #74
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Hi there,

I am new to this group. I recently diagnosed with MMN months after seeing close to a dozen doctors in different disciplines. Now I just started the first treatment of IVIG with 2g/kg/month. Don't know the efficacy yet.

My question is about applying for LTD from my company. My job demands me to respond promptly with my fast key board typing. But, due to MMN I have lost use of my left hand fingers. which have a huge impact on my response time and operation accuracy. I am worried that I may lose my job because of that. The neurologist suggested that I apply for short term disability leave (STD). But, by doing some self education, I realized that, MMN is not a short term disease. What happens after the 3-6 months is over?

Anyone has experience in applying for, and getting, long term disability(LTD)? I guess what I would like to know is:

Does "drop fingers" qualify for LTD?
How to apply for LTD and what procedures do I need to go through?

Thank you in advance.

Donald
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Unread 04-30-2013, 08:21 PM   #75
twitchyfirefly
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Originally Posted by StrivingDonald View Post
Hi there,

I am new to this group. I recently diagnosed with MMN months after seeing close to a dozen doctors in different disciplines. Now I just started the first treatment of IVIG with 2g/kg/month. Don't know the efficacy yet.

My question is about applying for LTD from my company. My job demands me to respond promptly with my fast key board typing. But, due to MMN I have lost use of my left hand fingers. which have a huge impact on my response time and operation accuracy. I am worried that I may lose my job because of that. The neurologist suggested that I apply for short term disability leave (STD). But, by doing some self education, I realized that, MMN is not a short term disease. What happens after the 3-6 months is over?

Anyone has experience in applying for, and getting, long term disability(LTD)? I guess what I would like to know is:

Does "drop fingers" qualify for LTD?
How to apply for LTD and what procedures do I need to go through?

Thank you in advance.

Donald
Hi Donald. I'm pretty much in the same boat as you. I'm a computer consultant, and used to be an awesome typist. Now I'm thankful that the latest Mac operating system has dictation built in.

I'm self-employed and am adapting to my limitations, such as not being able to do as many hardware jobs and repairs as I used to. All those teeny-weeny screws just don't cooperate when your hands shake! And, as you say, MMN looks to be a long-term thing. Only the very few lucky ones see much of a reversal.
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Unread 10-22-2013, 05:49 PM   #76
red huckleberry
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Hi, I was dx with ALS/possible MMN a month ago. No insurance. Trying to arrange things. I am wondering, have any of you tried tumeric, Vit D3, or other unconventional therapies? Also, before you got symptoms, did you hit your head really hard? Doc said that probably didn't matter, but I am curious. I have had slow wasting of my left hand and arm, now it's moving into my right arm and leg. I cannot use my left arm or hand for much of anything now. No pain. I guess I'm looking for an alternative to IVIG, hate needles. Thanks for having this forum, it is very helpful to read what others are going thru.
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Unread 11-21-2013, 03:50 PM   #77
eagleyes
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Quote:
Originally Posted by red huckleberry View Post
Hi, I was dx with ALS/possible MMN a month ago. No insurance. Trying to arrange things. I am wondering, have any of you tried tumeric, Vit D3, or other unconventional therapies? Also, before you got symptoms, did you hit your head really hard? Doc said that probably didn't matter, but I am curious. I have had slow wasting of my left hand and arm, now it's moving into my right arm and leg. I cannot use my left arm or hand for much of anything now. No pain. I guess I'm looking for an alternative to IVIG, hate needles. Thanks for having this forum, it is very helpful to read what others are going thru.
I have MMN, was diagnosed it December 2009. I have been on IVIG and it has helped a lot. I also take a very good multivitamin designed for people with neuropathy problems but has found it to not help.

I would seriously consider getting IVIG asap before just condition worsens and you are not able to walk. If you live in the United States I would apply for Medicaid or Medicare immediatley. This disease will cripple you permanently if you do not get treatment soon. I wish you the best of luck
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Unread 11-26-2013, 10:41 AM   #78
Maria williams
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Originally Posted by Braveheart07 View Post
Hi,

I am new to this post----just wondering if anyone has had experience with Multifocal Motor Neuropathy with Conduction Block and what has worked for you. I am scheduled to receive IVIG therapy soon, and am curious about that as well.....Any info. would be greatly appreciated..
Thanks !! Doug
Hello Doug,
I also have MMN, I was 65 years old (Female), when I was diagnosed. Now I'm 69 years old. The IVIG did not work for me. I got mennengitus 2x from that drug. This was back in 2010.
On Feb. 2011 my Neurologist put me on Hizentra, per infusions, done at home. 3 grams (15 ml) twice a day, twice a week. Over time that has increased to 4 grams, (20 ml ) twice a day, 4 times a week. The drug is expensive, but I do have Medicare and Humana supplement insurance, with a co-pay of $860.00 per month. However, I'm doing very well on this drug, so far.
Sincerely,
Maria W
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Unread 11-29-2013, 07:51 PM   #79
twitchyfirefly
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Originally Posted by Maria williams View Post
Hello Doug,
I also have MMN, I was 65 years old (Female), when I was diagnosed. Now I'm 69 years old. The IVIG did not work for me. I got mennengitus 2x from that drug. This was back in 2010.
On Feb. 2011 my Neurologist put me on Hizentra, per infusions, done at home. 3 grams (15 ml) twice a day, twice a week. Over time that has increased to 4 grams, (20 ml ) twice a day, 4 times a week. The drug is expensive, but I do have Medicare and Humana supplement insurance, with a co-pay of $860.00 per month. However, I'm doing very well on this drug, so far.
Sincerely,
Maria W
I would just like to point out that Hizentra is also immunoglobulin. It's just a subcutaneous version rather than IV. Here is information from the manufacturer:

Quote:
Hizentra is an immunoglobulin (Ig) replacement therapy that you infuse yourself, using a small needle and infusion pump. It is approved by the US Food and Drug Administration (FDA) for people with primary immunodeficiency disease (PI, also known as PIDD). Because Hizentra is ready to use at room temperature, you can infuse whether you’re at home or on the go.

Hizentra provides you with stable, steady-state Ig levels, whether infused weekly or biweekly (every 2 weeks). In addition, Hizentra:

--Delivers an Ig dose in half the volume of 10% solutions because it is a 20% concentration*
--Can be stored at room temperature for up to 30 months (up to 77°F [25°C])
--Maintains a consistent level of protection against infection5
--Provides proven protection and safety
--Hizentra should not be used if you have had serious negative reactions to immune globulin (Ig) preparations or a deficiency of an Ig known as immunoglobulin A (IgA). Because Hizentra contains the amino acid proline as stabilizer, patients with hyperprolinemia (too much proline in the blood) should not take Hizentra.
Maria, do you find that it actually reverses some of the weakness or other MMN symptoms? I have never run across this blood product before, so I'm curious, as it's getting harder and harder to start an IV and I'm reluctant to get a port.

If you are new to MMN, be sure to do some Google searches for other online resources. This forum is very good but there isn't a lot of MMN activity.
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Unread 12-01-2013, 03:08 PM   #80
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Originally Posted by bazzab View Post
I have had MMN with CB since 2000. Left arm and hand weakness and tremors. Symtoms began in 2000 and diagnosed in 2001 ( first diagnosis was Motor nuerone), began treatment with Ivig (Intragam) 150gms at three monthly intervals, this treatment increased strenth levels in the short term. Over the years the time between Ivig infusions has been decreased. Now recieving 90gms every 5 weeks. My self testing is to do a bicep curl with a 1 kg weight and record the number of times that I can lift it. At the start my peak was 30 times now my peak is 9 times, so the effectiveness of the Ivig is decreasing. These records have all been charted and the Drs love it.
In October 2007 I was treated with Rituximab, this increased my strength level (16 lifts) but only last for two months then back to previous levels. In Dec 2008 I commenced a six month course (1 per month) with cyclophosphamide, I have had two doses as well as continuing the usual Ivig. Small improvement after the first treatment, still waiting for the second to kick in.
has anyone else been down this path and is it worth it.
Hi sorry to bother you but I am new to this site and cant seem to find how to post a messege from scratch. Maybe I am not looking in the right place but would be grateful for any help.
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