ALS or MMN?

[liva]

Hello everyone

Multifocal motor neuropathy MMN

I came across the link above and I think my question narrows down to this:

If you were to name one center or doctor who is pretty familiar with ALS and his/her/its diagnosis could be some how reliable, who (where) would that be?

I am not positively diagnosed with ALS while I have some similar symptoms, furthermore, I have similar symptoms to MMN. I understand there isn't a definite procedure to diagnose ALS but I am sure there are doctors out there who have spent more time and effort about it. The ones I have been too, even though sometimes extremely expensive, had no more knowledge about it than what they read at med school.

I'd appreciate it if you can provide me some date.

Regards
A

 

[arwaxru]

Erik Pioro, MD, PhD, Cleveland Clinic in Ohio, wrote one of the medical textbooks, and is an ALS expert.

 

[KC2U2]

Closer to your part of the world, the Hadassah Hebrew University Medical Center in Jerusalem is highly regarded. They will soon begin an FDA approved stem cell clinical trial.

 

[notme]

HI.

The EMG/NCV (assuming you've had them done) should point out the MMN if that is the issue--especially if the antibody test is positive. To diagnose ALS--I'd certainly recommend a physician that specializes in the disease. You might contact the ALSA and see if they can recommend a physician in your area.

As CIDP, MMN and several other conditions have similar symptoms early on--it's important to get an accurate diagnosis--as most of them have treatments available as you've read.

ALS is difficult to diagnose, and is ONLY diagnosed when all other possible causes have been ruled out.

 

[hopingforcure]

MMN will show conduction blocks on the nerve test. Sometimes not found initially. MMN will not show Upper Motor Neuron signs.. That does not mean the upper body..

 

[Kitchener]

Hello
I am actually going through the same process myself, as my neuro cannot decide if I have MMN or ALS. Either way I am very early stage as I have no clinically defined weakness at this point - my symptoms are confined to fasciculations in the right arm, less on the left, and two questionable EMGs. The second EMG was specifically to look for conduction block, and was inconclusive. Equally the antibody test was not conclusive either. They say ALS is hard to diagnose - well so is MMN. My neuro has told me that just because conduction block couldn't be demonstrated, and that the antibody signal was not there, doesn't amount to anything one way or the other. MMN and ALS share many traits, including weakness, fasciculation, progression, spasm and certain EMG outcomes (one thing I have learned is the EMG is helpful in some instances, but in this area can lead to more questions than answers). One clear way to differentiate the two is the presence of upper motor neuron (UMN) symptoms - spasticity (clinical stiffness), hyper-reflexes, upwards planar reflex (get a friend to stroke the middle of the bottom of your foot with the back of a teaspoon and check which way your toes reflexively move better still, get a neuro to do it). Lack of co-ordination or balance, slurring of speech and out of control emotions (laughing/crying inappropriately) are all UMN symptoms. If you have more than a couple of these, chances are you don't have MMN.
I really hope this helps. My neuro has taken the backsolve approach and prescribed me a course of intravenous immunoglobulin (IVIg). If it works, it was MMN. If not, it might be something else. IVIg treatment is effective in 70% to 80% of MMN cases. So far I'm 10 days in and if anything it's made my symptoms worse - I'm taking this as a good sign as apparently it has no discernible impact on ALS. Anyway, early days.
The very best of luck with your search for answers. Fingers crossed it's the right one.
Kitchener

 

[notme]

Sorry, I'd much rather be told it was MMN than MND. You're taking the fact the Ivg isn't helping as a GOOD sign? I'm afraid I'd be taking that as a bad sign--if it points more toward ALS

 

[my3sunz42]

My dad was initially diagnosed with ALS and went to Johns Hopkins (Baltimore, MD, USA) for a 3rd opinion. There he saw Dr. Vinay Chaudhry and received his final diagnosis of MMN. To date he has received IVIG treatments which have slowed the progression of the disease. Well worth the visit!

 

[trfogey]

I agree with notme, Kitchener. Not responding positively to IVIG pushes ALS/MND up toward the top of the possibles list. I wouldn't call that a good thing unless there is some other finding by your neuro that points away from MND. The absence of upper motor neuron signs doesn't eliminate the possibility of progressive muscular atrophy (PMA), which is a MND that affects the lower motor neurons.

To the original poster -- you are never going to get definitive answers to your questions by poking around on the Internet and trying to diagnose yourself. Perhaps if you specified what these "symptoms" that you have are that make you think you have ALS or MMN, we'd be able to give you more appropriate advice.

 

[Kitchener]

Hello All
I didn't mean to hijack this thread. But just to clarify, I have had one IVIg infusion to date, 10 days ago. My treatment course will be 3 to 6 months, with 60g of antibodies infused at 4 weekly intervals (over 2 days each time). I have been told not to expect anything for at least 3 to 6 weeks. My comment was that the infusion has provoked more severe fasciculations starting from a day after the first treatment. Therefore I believe there is a direct link between the treatment and my symptoms, which would most likely not be the case in ALS (nothing at all would happen). There is also every chance I am jumping at shadows. In any event, after only 10 days and one treatment there is no way that anyone should expect any useful information on the condition to be revealed at this stage - it needs at least another month. Perhaps I shouldn't have made the comment, but I'll let you all know in a month or two....

 

[hopingforcure]

One of our member's who has had symptoms for 4 years, was just diagnosed with MMN. She said she has upper neuron symptoms but since they were not pathological until now he is not concerned. What do you guys think. I had never heard of MMN with UMN problems but she has conduction block, a clear mmn sign.. Picking your brains for her.. thanks guys.

 

[laurel]

Kitchener I just wanted to comment on the dosage of IVIG. The correct dose is critical for success in treatment. If the dose is not correctly calculated according to your body weight, it just will not work. The standard is to give a loading dose which is 2 G of IVIG per kilogram of body weight--and this will be spread at over 3 or 4 days. Thereafter you should receive 1 G per kilogram of body weight every 3-4 weeks. The biggest mistake that doctors make with prescribing IVIG is to not prescribe proper amounts. I have read many articles on this as hubby has been on IVIG since 2007. We know from trial and error with dosage amounts how critical it is to receive the correct amount. Also, on the CIDP forum (most members take IVIG) many members have commented that they did not see positive effect after the first loading dose and it took a couple of months for them to note improvement. My husband was lucky and felt good effect at the end of day two of his loading dose. From discussions on the CIDP forum it is all too common for doctors to under prescribe IVIG.
Laurel

 

[liva]

Well guys

Thank you so much for the replies. most of the terms u used in here I don't even know what they mean . As I mentioned in the other thread, I am researching on behalf of my fiance'. So I will be sharing this information with her doctor to see what we can find.

Thank you again

 

[Kitchener]

Hi Laurel
Thanks for the info. I will check with my neuro when next I see her (after doses 2 & 3). It's interesting that the views on dosage vary. I have also noticed a mistake in my last post - I actaully received 60g per day = 120g total. I am 75kgs so this is pretty close to the 2g/kilo you mentioned. My neuro certainly thought she was going pretty hard at it, and in fact despite my earlier bravado I ended up with a headache that would kill a brown dog so not keen to up the dose further (unless absolutely necessary). It's actually fairly difficult for me to be too certain about the effect as my symptoms are confined to fasciculations (at present, hopefully forever). It's hard to be empirically sure if they are better or worse, they have just felt worse since the treatment, and haven't gone away. I still feel good after the headache has gone, and still go out running and cycling, so I don't have a lot of reference points to measure improvement against. I just hope I wake up one morning with no more fascics....
Thanks for the post

 

[laurel]

Kitchener have them slow down the drip and that will help prevent the headache. Also, drink lots of water starting 2 days before and carry on with it during treatment and two days after. Not sure about the impact on fasciculations--hubby had them--but he had atrophy and weakness. He noticed increased strength fairly quickly and we didn't pay attention to the fasciculations as they weren't the troublesome feature.
Laurel