Emg And The Diagnosis Of Als/mmn

[can]

How many of you out there think that the EMG ( needle in the muscles and electric currents to certain areas ) exam was instrumental for your neurologist to make any type of prognosis ? Did any of you not have an EMG exam at all ? I am very interested to know. Thank you

[deedee8611]

Hi Can,

I have had about 10 EMG test since 2002..It does show the dr. where and what damage is done.. In my case it took 9 of them before the one dr. found conduction block..As of right now they do not think it is ALS but I do have a motor neuron/ autoimmine/ Hashimoto disease..Am on IVIG every 2 weeks..Have tried cellcept and cytoxen and had muscle weakness and severe cramping..Hope this helps.

Merry Christmas and Happy New Year

DeeDee

[Peg B]

Hi DeeDee, Hi Can

Nice to see you here Dee (sort of speak). Merry Christmas and Happy New Year to both of you.


Dee and I have a lot of the same, including a Dr. But my first real EMG (I had one years before - that was not done well) led the neuro to ALS and need of second opinion. The second opinion was "atypical ALS" or MMN. I have been on IVIG since January 2007. I have one borderline conduction block at my elbow (R), atrophy of right hand and my limbs as per the EMG are "positive" for ALS. The IVIG is every two weeks and is still a test for MMN. Take Care, Peg

[kaylish]

I had two EMG's by two different Neurologists. They were instrumental in making the diagnosis. The only other method was to send my blood to Scotland to be checked for gangliosides ( I think) which are prominent with MMN. The diagnosis was made without doing this.

[Mark Kirby]

I've had multiple EMG's and they were instrumental in getting the IVIG treatment approved by my insurance company.

My neuro gives me followups ever few years based on changes noted in the 0-5 strength test.(I was first diagnosed in '99)

[Peg B]

Hi,

Well I went to the Neuro for the 4 month check up yesterday. My hand seems worse and she agrees. I told her "I hate to tell you anything." and patted her hand. She laughed. It looks like it may not be MMN but ALS as I should have real improvement on the IVIG. But I don't. She is keeping me on IVIG for the next 4 months and I am scheduled for another EMG on April 3rd. to see if it's really ALS. If I do have to go off IVIG and get worse, she said she will put me back on. I just don't fit the criteria of either but some of both. I like the Dr a lot and I think DeeDee (above) taught her a lot as she went through the same thing as I am going through.

Hey Russ even if I seem to be a little worse in a year even on IVIG, that doesn't mean it's not MMN. That's your experience right?

The good news is she is writing me up as "permanatly disabled" and some other stuff so I can get on with getting SS disability. That will be helpful. Take Care - God Bless you and Merry Christmas. Thanks - I appreciate being able to write to you all. Sincerely, Peg

[powder pig russ]

Yes, I can definitively say from personal experience that just because you get no improvement (response) on IVIg doesn't mean you've got ALS. It could mean you've got MMN and don't respond to IVIg. Since my blood work shows elevated levels of anti-GM-1 antibodies and I've got no response to any treatment, my neuro was rather emphatic I don't have ALS.

Russ

[Peg B]

Hi Russ,

My blood work does not show elevated levels of anti-GM-1. but I also have no upper neuron signs either. I feel much calmer and am very happy today but I got a bit overwhelmed last night. That was a temporary state, but it sure helped to be able to write on this forum. Thanks for listening and writing backe. Merry Christmas, Peg

[can]

How often will you be receiving IVIG ( and dose ) before your next EMG ? Did you get any improvement at all on the last IVIG ( for me a tiny bit ) ? I also have no upper motor neuron signs and I also have a negative anti-GM1. Happy New Year to all

[Peg B]

HI Can,

I will continue every two weeks. I do not know the dose. I get it tomorrow - I will ask, if I remember. It is not my regular nurse. The EMG is in April. Peg

[Dasa]

Hi Can, I have had 3 EMG's since 2005. The EMG was a big help in finding
that I have MMN. I had one done at Mayo too and just recently again in
September. I actually had a few nerves that have gotten better around my
wrist area, not sure what that means if anything.

Peace to you in the New Year,
Dasa

[Peg B]

Hi Dasa,

Congratulations!! That is great news.

Can asked about my last IVIG and I did not address that, but I am not looking better and seem to have more curling of my fingers in the right hand. I am also more tired since the holidays. Hopefully that is just a needed recovery time. Some of the decorations still up:)

My next EMG in April is to see if I have improvement. If not she will take me off IVIG and call it "Atypical ALS." She says whatever I have it will take "decades" for it to become fatal. Also if I do start to deteriorate quickly I can go right back on IVIG. So we shall see. Again, Congratulations and best to you. Peg

[can]

Yes, congratulations Dasa. Peg, if in April your neurologist does want to stop IVIG, maybe you might want to ask her if the IVIG treatments should have been closer together ( like some people on this forum ). I think Powder Pig Russ was inquiring about this before. Johns Hopkins Hospital found that infusions " peak at an average of 2 weeks and the effect lasts from several weeks to months ". Who knows ? Maybe you will improve after 4 treatments, 3 weeks apart. Good Luck. No one knows for sure, not even the doctors.

[Peg B]

I'm sorry Can, I do not understand what you mean. I get the IVIG every two weeks and have since January 2006. I don't think I can get them any closer. She did say she would start them again if I start to deteriorate fast, if she does take me off in April. But could you explain again to me what you mean. Thanks, Peg

[can]

Hi Peg B. Disregard my last statement about IVIG every 3 weeks etc. I thought ( without checking back ) you were getting IVIG every 3 months, not every 2 weeks. I hope you do have improvement by April.

[Peg B]

I realized that is what happened later in the night. I wasn't thinking. Thanks for your good hope, Peg

[can]

Hi again Peg B. It was me that confused the both of us at the same time. More good luck by April

[Ollie]

EMG, Needle Exam, observation and blood tests are the most conclusive way of diagnosing and differentiating MMN and ALS. When conduction blocks are found along the nerve path, then this definitely starts to point away from ALS. This is usually a sign of sheath around the nerve(myelin) being attacked. From what I have read, ALS never shows conduction block. Some common forms of ALS are associated with Anterior horn cell disease which is back by the spinal cord. Nerves start to die and then other nerves try and take over the dead nervers function for the muscle. This can show up on needle examination has a nerve controlling too large of a muscle mass. So to answer your question, EMG and doctor observation along with ruling other things out are the best ways to pin point the disease. That is the problem with ALS/MMN differentiation. They both look similar. There are MMN patients that do not show conduction block, but do benefit from IVIG treatments.

I was very relieved when the the EMG doctor found some conduction blocks in my wife's case. I know how up and down the diagnosis period can be.

She has received a week of IVIG therapy and that was quite effective. She did have a rare side effect of aseptic meningitis after the first two treatments. This was treated with steroids and she recovered fairly rapidly from the awful side effects. The treatments did make a profound improvement in her strength and ability to function normally. She had another 2 days of treatment 5 weeks later and again significant improvement.

Like other chronic illnesses, she and I are dealing with the potential her having to be tethered to a lifetime of treatments. It beats the alternative of not being to walk well, not being able to use her hands, and being chronically fatigued.

A big round of applause for the wonderful doctors and Neurologists at Rush University Hospital in Chicago. They have been top notch.

[Peg B]

However, when I went back this May for a second EMG/NCS at U of M, they were looking for improvemnent or not from the last EMG/NCS December 2006. I have been on IVIG every two weeks since Jan 2007. At the May appointement, they started with the NCS, and found evidence of improvement, even though my symtoms have not changed much over time. (I have good and not so good days). At that point the Dr. decided not to do the EMG, and to continue the IVIG but on a reduced schedule of 1 a month. So this time they did not need the EMG to move closer to a DX of MMN. So just to confuse the issure I offer this. Take Good Care, Peg

[AngD]

From reading some of your posts, is it possible that it can still be MMN if the IVIG isn't working yet? My husband has been losing strength in both arms, going on a year now. Buttoning shirts, opening things, writing, putting in contacts, holding a plate, etc are difficult, More so in the mornings too. We thought originally carpal tunnel but the hand orthapedic referred us to their nerve guy who did EMG and sent him for an MRI. We then went to the Neurologist who did a second EMG about 1 1/2 months ago. He couldn't rule out ALS but was leaning more toward the Multifocal Motor Neuropathy with Conduction Block. My husband has done 3 rounds of IVIG, 5 days every other week. He has felt no improvement as of yet. Our nurses said not to get discouraged as they have seen some not respond until after the 4th round. We went back to see the Neuro Monday. He was very disappointed that my husband hadn't responded but wants to try the IVIG awhile longer. He ordered 2/week, every week for 5 months. We go back to see him on July 14th, fearing if there is no improvement he mentioned switching gears and looking at ALS and trying the medication to delay what we can. We start the IVIG tomorrow for 2 days then, then again the following weeks. He is getting 40 g. We want to stay positive, but we are fearing ALS since he didn't get any positive feelings the first 3 rounds. Any similar experience or advice would be appreciated.

[redbarn]

I have gone through plasma treatments, IVIG for months, cytoxin, Rituxan and I am still getting worse. The Dr. still says it is MMN (I have had it for about 18 years now, but getting worse again since my last treatment of Rituxan last June. He now wants me to do cytoxin and Rituxan together..has anyone ever had this treatment together? I learn alot from the post. I am a female and my doctor is in St Louis.

[powder pig russ]

Redbarn

Sounds like you're seeing Dr. Pestronk? Yes, he has done Ritux/Cytox combo before with others here with success. Like you, I too do not respond to anything and gave up all meds after Cytoxin didn't work. I got tired of the medical tinkering and decided to live life without attempt to change what I've got.

It's kind of like a spouse - I'm in it for the long haul (thick & thin) and have accepted the MMN for what it is rather than trying to turn it into something it ain't ever gonna be. I'm not prepared to go through a knock-down, drag out divorce (super intense Cytoxin treatment - 16 gm over 4 days) risking consequences I'd rather avoid just to prove a point as to who's boss of this body.

Instead, I'll meditate it into obscurity to delegitimize the annoyances it attempts to litter throughout my existence. Too bad they don't dispense this kind of help before they write a script IVIg and all the other goop they believe will make a difference. Rather, we'll use this listserve to dispense casual feedback between us.

Russ