OMG. Im back. Oldtimer here - will soon have dirty EMG

[Scaredlin]

Hi there. Im getting ready to stare down a dirty EMG
I posted what I thought was my parting "swansong" of "I have Lyme and reactivated Epstein Barr" and thats the reason for my twitching, blah blah blah, a year ago. My story was like all of you- started twitching full body out of the blue Christmas 2013, had 2 full EMGS an tongue EMG both negative, both within the first six months of twitching. Then was told I had virus and Lyme and moved on from (A**) as the cause of my symptoms.

However, I have taken a GIANT nerve setback in the last three months which is making me reevaluate this whole shebang. All of a sudden my calf started bothering me and I have very noticeable atrophy. The neuromuscular specialist was actually alarmed. It measures 3 inches smaller than the other. I feel like a zombie is knawing at it with pain, burning, pulling, tingling. It feels like its in the bone. My other calf is now joining in on the party. And Im still twitching. I also have a ton of autonomic symptoms and just had testing today. I also have some central nervous system symptoms. What could inflame all three of my nervous systems? Not convinced its the lyme b/c its now looking like that was in my past and I just have antibodies to it.

I know the differential diagnosis is large and its probably some sort of peripheral neuropathy, but in regards to *** is it still in the differential???? The dr testing my leg strength and said Im strong but a tad weaker on the atrophy side. Can still go up and down on the atrophied calf and even run on it for a little. Can walk on my heels, toes, etc.

How is it possible to have 2 clean EMGs and now this total fall apart! I hate how neuro things have to "develop." I guess my question is almost two years later I have atrophy but no real weakness, and still twitching all over - is it likely to be ALS? And the calf that is atrophying doesn't even twitch as much as the rest of my body! It rarely twitches.

I have had a million blood tests. The only weird thing is an IgM that keeps showing up as high and a low C4 complement and Antinuclear antibody. That shows SOMETHING immune is causing this nerve problem but yet I have no autoimmune disease. Maybe this is some immune mediated neuropathy.

I can't believe that I still can't check this off the box.

I know you can't tell me its just BFS, but is it likely to be ALS? In my case the twitching came a full 18 months before the atrophy and Ive had 2 clear prior EMGs (post twitching). Im afraid to get this EMG next week..... Help, any words of encouragement!

[Scboy]

Hi.
I remember you. We joined the board and started having symptoms about the same time. I have similar symptoms as you do. Lots of sensory symptoms to go along with the twitching. I am doing much better as of today.- could change tomorrow though : )
As far as ALS my dr at Johns Hopkins said people don't go for years wondering if they have ALS with out some profound weakness. By now something wouldn't be working if you had ALS according to what I've been told. Don't let your mind go there. Plus all the sensory symptoms point away from ALS. Sorry you are still struggling. Hope you feel better soon.

[Scaredlin]

Scoboy- I am glad to see you are feeling better. I thought I was for a while. I guess I have some kind of neuropathy. In my heart I know its not *** It just mystifies me how I have seen like 30+ drs since this started with no diagnosis. And how it all of a sudden progressed with atrophy in the last three months. The only thing I can think is that its actually small fiber neuropathy (never had a nerve biopsy and it wouldnt have shown on my emg) although I heard SFN does not have atrophy with it. I keep saying did I take the EMG too soon (it was within 6 months of symptoms)??? But I thought the rule was if you were symptomatic and twitching the A** would have shown, itself, right? I need to cross something off this list!

Thanks for responding. I will keep everyone posted as it unfolds.

[Scboy]

My improvement began when my local neurologist started treating me for leaky gut syndrome back in July. He said it was worth a shot and he was right. Most main stream medical doctors won't even bother with leaky gut. Been taking l-glutamine, multivitamin, digestive enzymes, and strict rotational diet gluten, soy and dairy free. I'll start probiotics after Christmas. I had to experiment with the dosages but I have it down now. I was so messed up probiotics gave me hellacious nerve pain all over my body. So I've held off until after Christmas. The breathing problems I was having was actually bad bloating not muscular. My dr has taken a particular interest in my case as I'm one of his first LGS cases he has treated.
Not saying this is what you have of course, but this is my story so far. We share some of the same symptoms. It might be worth a shot to ask your doctor.

[RIno468]

Scaredlin -

I am not a dr but what you are describing really sounds like a immune related situation.

If you can still walk on your toes and heels - I think you are safe - definitely keep us posted and keep on following up - it could be a good thing that this is happening as it could finally be showing what is ACTUALLY wrong with you.

[Scaredlin]

Guess what - the EMG WAS NEGATIVE. I have so much intense pain and burning etc. How can that even be possible????? Doing nerve biopsy next week. Yes, it sounds autoimmune to me. Rheumy isnt' making that call yet though or labeling it as lupus, etc. I am going to an immunologist on Nov 16. Will update.


But its not You know what!!!!

One thing off the list.

Thanks guys.
L

[German2]

HI!

I share almost the same story...My symptoms began 3 years ago, my twitching started more then two years ago...My muscles slightly declined during that time but were partly recovered. Then my small fingers fell asleep every night. Then also my ring fingers...then my whole arms. A half year ago, strong pain started in my lower arms, and then, almost overnight, I lost muscles in both lower arms, but more in the left one. This is so bony meanwhile that it hurts very much. My muscles are stiff in general and tensed...I had more than one clean EMG in the first 2 years. Then I had one with chronic denervation signs. Another performer presented a "normal" EMG afterwards, but the muscle biopsy confirmed the chronic denervation. My problem is that everyone confimrs the atrophy, but no one give me a thorough investigation.

I have the leaky gut, too. I treated it with glutamine, probiotic, prebiotic and stopped eating gluten and dairy, too. I would say, the twitching went much better, but not the atrophy...Ok, I also have a shift in my immune system (but that was not discovered by my immunologist but by a private doctor), have hashimoto and certain autoimmune phenomenons in my past..So maybe wa also share a similar reason for our problems. But the fear about the atrophy is big. Sometimes I also have stabbing pain in my feet...reflux problems, burning sensations..it gets more and more.

I will see how it proceeds for you....sorry for my english

[German2]

By the way...I once had a low C3 (as you had C4) and complement system and an elevated ANA, but that might be due to Hashimoto as well...

[Scaredlin]

German
Funny you should mention it, but I did get some blood work back today - BOTH c3 an c4 are depressed. And, something new for me - my thryoglobulin antibody is positive. My TSH is 0.55 thats very lowish but the lab minimal is still 0.40.

I dont know if the thryoglobulin antibody itself means autoimmune attack or do you need other parameters. From what I am reading, it would be graves, not hashi, because of my low numbers.

I take it you are female? I am, just turned 47.

I go back to another neuro (who I trust more) tomorrow. He is doing biopsy as well. I also had a paraneoplastic panel done.

I need this to end. Nothing worse than feeling like you are neurodegenerating every day. I constantly have a head pressure funny feel to me, like Im on a rocking boat. With all the autonomic issues, its sounds like a lot of people on the dysautonomia board. Don't know if my reactivated EBV and CMV could be causing all this nonsense.

I pray to the good Lord every day, for me and for everyone here. He's got to be so tired of me:)) I just want to get back to my kids and not live scared every day I wake up that Im getting worse or this feels weird or what not.

[German2]

Hi Scaredlin,

how are you now? Any news? Yes, I am female, 45 with 2 kids and a hashimoto...but this is not the reason for my atrophy in lower arms...my problems proceed..pain in neck and back. Both feel unstable. As if my muscles cannot hold the load any longer. My hands get more and more clumsy...my doctors still don't know. I have to wait until the 16th of December on my next appt in neuromuscle ambulance with an MND expert.

Maybe you saw in my post that my former gp (internist) diagnosed my already with motoneuron desease last year...I just have seen recently....I feel very awful.