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melb

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Country
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gold coast
i am a 31 year female who is supposed to be enjoying her young family but 7 months ago after the birth of my son i noticed pain in my left forearm which was shooting up to my fingers and within a couple of weeks i could not extend my fingers properly and had wrist drop. i went to my GP and she thought i had damaged my ulner nerve and sent me to neurologist for a nerve conduction study. Long story short the conduction study came back normal and i was sent for an xray and ultrsound on the arm and ulner nerve all came back normal. This was the point alarm bells started ringing and i was sent for MRI on my brain, spinal cord, and left arm, once again all came back normal. The neurologist said to leave it a couple of months to see if the would improve on its own. I thought nothing of it and planned to see him in couple of months. During this time i noticed that i was becoming fatigued, and my muscles would ache just doing normal day to day things. My left hand and forearm got worse with strength and muscle tone. On my next visit to the neurologist he took one look at me and began another clinical exam from head to toe it was at that point he informed me that my left leg was weaker then the right and i had hyperflexia in the legs and twitching in the upper left arm. He sent me for anothe batch of MRI scan to eliminate MS and to check if he had missed anything all came back normal once again. At this point i was sent to another neurologist who specialises in motor neurone disease. he conducted an EMG test and found weakness in the left arm but without a conduction block and said the right side was not 100%, i had also had all the bloods taken and come back normal. neurologist said that he had to do some work on my results and would send them to my refering neurologist. To cut an even loger story short on my return to the neurologist he gave me the news that i motor neurone disease instead of multifocal motor neuropathy because i had no conduction block and my bloods were negative. Since then i have been getting twitching all over my body not all the time and my muscles fatigue and ache if hold the baby or doing alot on my feet, i just want to sleep all the time and my balance seems to be getting worse. This is where it gets confusing for me the MND neurologist contacted me and suggested starting a course of IVIG just in case it might be MMN i have undergone a treatment everyday for week (this was 2 weeks before christmas) i have not noticed any difference or any worse progression and have been told it may take 6months of treatment before i notice a difference and so i ahve therefore agreeded to 1 treatment every month. Is it normal for MMN to have no conduction block and negative bloods for the GM1 antibodies and everything else they could possibly test?. Feel like my life is in limbo. has any one experienced this or could offer some input on their personal experience then i would love to hear from you.

thanks
mel
 

laurel

Very helpful member
Joined
Jul 19, 2007
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DX UMND/PLS
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Mel I have read that it is not uncommon in MMN to not have a conduction block so if you don't have a conduction block it doesn't rule out MMN. Same goes with GM 1 antibodies. Some MMN'ers have conduction blocks and elevated antibodies and some don't. Sounds like you are going to have a waiting game and see how you respond to the IVIG. I believe that I read that some people with MMN actually respond better to plasmapharesis than they do to IVIG. Might be worth discussing plasmapharesis with your neuro. Best of luck.
Laurel
 

melb

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Learn about ALS
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AUS
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queensland
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gold coast
Thanks laurel,
good to know, at times it becomes hard to get a straight answer from the neuro's (hence the confusion and frustration on the situation).

cheers mel
 

Peg B

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Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi,

I have MMN. After some time they found one partial/probable conduction block and no blood issue. I was first diagnoses with ALS, (EMG/NCS work up and clinical observations) but because my progression is so slow I was put on IVIG in order to see if I have MMN or ALS. That was Jan 2007. I am about the same as I was but with some improvement. I get increasingly tired if I do not get IVIG every 3 weeks, have more trouble writing and fall more often. So I would say give the IVIG some time. Some people get a big improvement from it and others like me stay steady which is such a blessing. I have never heard of the "plasmapharesis" mentioned above. Give IVIG a chance. Best Wishes, Peg
 

Peg B

Distinguished member
Joined
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Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
ps

It took over 4 years for me to get a diagnosis even though I asked outright in 2002 if I had ALS/MS or some other systemic disease. The doctor is also confused and frurstrated as this stuff is so hard to figure out. Try to be at peace as you wait. My sincere hopes for you. Peg
 

rulimping

Member
Joined
Oct 24, 2010
Messages
11
Diagnosis
11/2010
Country
aus
State
Vic
City
Melbourne
Hi Melb,

I was diagnosed with MMN with conduction block in late 2010 and have been on IVIG monthly-3 weekly since - altho I only have a moderate response I understand that if stopped the treatment I am likely to experience further impairment. Since starting IVIG I have no significant neuropathy/block but I do feel overall that more of my body is affected by it, rather than just being restricted to defined points (wrist/foot etc), and I have more twitching and fatigue.

My neuro didn't bother testing for gangliosides as we already have a diagnosis, and I read some people have them, some don't.

I am meeting with my neuro again soon to discuss the option of immunosuppressants which my neuro suggested to me about 6 months ago. I am happy to post here on the outcome of that when I know.

I aim (!) to exercise more this year as I think I am the better for it. Really I am restricted to the exercise bike or swimming, but it does seem to make walking easier fo rme, and of course the overall wellbeing is far better than the alternative of blobdom.

I really wish you well in your quest for a diagnosis and treatment, and adjustment to your medical condition. It is such a difficult time.

Regards
J.
 
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