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snubbyfan

Member
Joined
Oct 2, 2012
Messages
12
Reason
PALS
Diagnosis
09/2012
Country
US
State
WV
City
Paw Paw
I'm off to another Neurologist tomorrow for another emg. The doctors keep bouncing me around for more and more tests. It's been going on for a couple of years but they've brought it down to either ALS or MMN. Tomorrow I should finally get an answer.
 
Welcome to the club nobody wants to be in. I hope they finally narrow it down after the EMG.
I have gotten some very good advice on this and another ALS forum on everyday things. The doctors seem to just tell me what the average ALS patient goes through.
Repost after you get your news.
 
Good luck tomorrow, snubbyfan.
 
Good luck with the EMG. Please let us know how it turns out.
 
Thinking of you today. Hope it goes well for you. Do let us know - you're not alone!
 
We all hope it's mmn rather than ALS
 
Well, that was a lot of fun. There's obvious muscular degeneration and immobility but nothing definitive. The results of the emg were "inconclusive," he couldn't find nerve blocks indicitive of mmn. He said it could be because it's been going on for such a long time. I'm going to be scheduled for an ivig as a diagnostic tool. They also took more blood to check for antibodies that would indicate an autoimmune condition. The diagnosis for now is ALS/MMN. I did at least get the paperwork for a handicap placard for the car signed.
 
SNUBBYFAN,

IF you have a diagnosis of ALS/MMN, the doctor will happily put that into a letter and this would qualify you for fast track handling of social security, Medicare, and Veterans benefits (if you are a veteran). Don't delay. This is significant money, backdated to the date you applied. And eventually, if not soon, you will need all the money help you can get. We've all been through this, and it is important to do as soon as you have a diagnosis.

If, in the rare chance that your doctor won't say "this is ALS," then just get him to write the key phrase is: "is more likely than not indicative of ALS." Good luck.

Also, think about your dependents: request to max out your life insurance policy immediately, today, prior to getting the diagnosis in writing if possible.
 
Hoping that since the Emg is inconclusive that something else will be determined... but you should plan ahead as the others have said yo be on the safe side. Good luck.
 
As I understand it, finding a nerve block would be a "good" thing and would indicate mmn. Not finding an obvious nerve block is an indicator of als. I'm hoping the ivig leads to a diagnosis of mmn.
 
So sorry to hear that the EMGNVC was inconclusive. More waiting. I know that it's really difficult.
Good luck with the IVIg. Hope you'll do well and it will provide some answers.
 
Glad to hear that the results of the EMG were inconclusive. If you have been having problems for 2+ years and the EMG is still not showing clear denervation, that's a good sign. At the very least I would suggest that if you do have ALS, your progression is slow.
 
We are all hoping the IVIG helps, but it sure can't hurt to take Mikes advice and plan ahead just to be safe since the test didn't show it definitely.

Are you seeing an ALS or MND specialist or even better, clinic? My own doc is a neuromuscular specialist, and seems well-versed in the entire arena, not just ALS or general neurology.

It seems like if you've had this going on for so long, they'd have tried the IVIG sooner! Gotta love the hurry up and wait.
 
Snubbyfan, I'm no expert but do have a little knowledge of insurance. If it were me I would not mess with a current insurance policy but would get a separate policy. It is possible that an insurance company would challange the time of the onset of your illness and you would not wish that to affect your current policy. Hope things go well for you. Sorry you are having to deal with this. Best to you. Sunewun
 
Snubby that are many MMN'ers out there without nerve conduction blocks--here's hoping you are one of them. My husband has CIDP--MADSAM and had A L S as a diff. d x as well as MMN. He has been on IVIG 110G every 3 weeks since 2007 and he is doing quite well. Remember to start drinking lots of water 2-3 days before the IVIG and lots during the treatment to ward off the killer headaches that IVIG can cause. I hope the IVIG works. It may take a couple of treatments before improvement is seen. Best of luck.
Laurel
 
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