A Curious Journey

[FirstTermMed]

Hello again! I spoke with my Neuromuscular doctor and received my EMG report, stating it was abnormal from what she assumes to be related to autoimmune issues due to my ANA being 1:640. She took a skin biopsy from two locations on my left leg, looking for small fiber neuropathy, which I'll receive in two weeks. Had my Uro appointment, no Prostate/Testicular problems. Met with GI doctor, set-up a dynamic swallow study with another CT of my lower abdomen, going to wait on Endo/Colonoscopy it would seem.

I was hoping I could garner your opinion Wright on my EMG report, I understand your quite busy and I would greatly appreciate your opinion on the matter. Hopefully the links work, thanks! =)

 

[FirstTermMed]

Sigh, well thats embarrassing, lets try again!

** images linked from Facebook don't work **

 

[FirstTermMed]

Seems I'll have to do this the old fashioned way =)

Summary:

The right Peroneal F wave minimal latency is prolonged. The remaining selected nerve conduction studies of the bilateral upper and lower extremities, including proximal conduction as measured by F-waves, are normal.

The needle examination demonstrates increased insertional activity in the left flexor hallucis brevis and bilateral medial gastrocnemius muscles with positive sharp waves in the left flexor hallucis brevis and right medial gastrocnemius muscles. Reduced recruitment and an increased proportion of high amplitude, long duration polyphasic MUAPs are seen in most of the muscles in bilateral L5 myotomes, distal lower extremity muscles as well as the left C7-C8 myotome, as recorded above.

Interpretation:

This is an abnormal study suggestive of mild, chronic, bilateral L5 and left cervical (c7-8) polyradiculopathies. Cliincal and radiological correlation is recommended.
The distal > proximal abnormalities on needle examination is suggestive of, but not diagnostic of a mild large fiber peripheral neuropathy. Clinical correlation is suggested.

From what I could garner from the EMG, I've had widespread Renervation within all my limbs (except my right arm, which has been twitching for almost a year now with the rest of my body) with no signs of active denervation (Fasic, Fibs, etc), except in three muscles. This doesn't really sound like a MND, as I had discussed the matter with my Neuromuscular doctor and she tends to agree. I was hoping to get your opinion on the EMG if at all possible Wright. Thanks again to everyone for all the help =)

Ali

 

[kmendsley]

Did you mention being bit by a centipede to your neuro? Have you seriously thought of seeing a poisounous control, or parasite specialist?

 

[wright]

I don't think I can really add more here, Ali. I agree with your neuro's impression and I agree that it doesn't look like the EMG of someone with ALS, especially given your clinical symptoms and how they point away from ALS. Something is causing inflammation and damage to your nerves, and as soon as the cause is found, you will be on your way to treating it. It could also be, given that your nerve issues don't appear to be progressing too much (evident by your EMG and evident by your lack of worsening symptoms), that your body is already on its way to healing. Just be patient. Take care and I wish you luck.

 

[FirstTermMed]

Did you mention being bit by a centipede to your neuro? Have you seriously thought of seeing a poisounous control, or parasite specialist?

Hey Km's, I did mention the story to my Neuromuscular doc, and she had a good chuckle at it. I asked if I should see a Parasite specialist and I could if I wanted to, at this point she's really not sure whats going on with me (the waiting game, yay!). I also wanted to inquire if you have a donation fund set-up in your name, would love to donate and help in any way I can. Also, feel free to pm me if you want to vent, or just talk. I have loads of free time since I'm not in school and I make for some decent convo =)

Ali

 

[kiwisally]

Ali, I've been reading along for a while and don't really have anything all that constructive to say that hasn't been but can recounting a story from 30 years ago might interest you. I had a good friend who went to Nepal to do some mt. climbing, had a great time, all good, came home (US) and got neurologically and generally very ill, he was well connected medically and saw the best of the best doctors and then some but about 9 months later, some 30 lb's lighter, with little muscle mass left and totally at his wits end, knocking on deaths door, with no answer to his ills anywhere in sight, in utter frustration he himself pulled out an electron microscope (which he used at work) and started looking into himself, literally, bits and bobs, can't recall now where he found "it" but he found "it" and then since no one in the US had a clue what "it" really was they had to get the doctors in Nepal to tell them exactly how to get rid of "it". That treatment worked, just like that, he was in hospital some several week but he make a full recover. Good thing he had access to the scope.

 

[FirstTermMed]

I don't think I can really add more here, Ali. I agree with your neuro's impression and I agree that it doesn't look like the EMG of someone with ALS, especially given your clinical symptoms and how they point away from ALS. Something is causing inflammation and damage to your nerves, and as soon as the cause is found, you will be on your way to treating it. It could also be, given that your nerve issues don't appear to be progressing too much (evident by your EMG and evident by your lack of worsening symptoms), that your body is already on its way to healing. Just be patient. Take care and I wish you luck.

Thanks Wright! I really appreciate the feedback =) I got knocked on butt with this report, as I wasn't really expecting it to come back anything but normal. I saw my Neuro yesterday, and I had her perform another clinical exam on me, and to be as thorough as possible. I once again performed every test without any sign of weakness or trouble. My reflexes were all normal, with no UMN signs to speak of. I had her examine my body for atrophy, and could not find any presence of such. She remarked that this was the reason my EMG surprised her so much, considering my clinical presentation. She as well admitted the EMG was just to be thorough, not expecting the results to be abnormal.

Well I wish I could say I haven't had any progress, but alas. My face has begun to twitch (minus the tongue), along with my hands which had remained twitch free for a long time. I have noticed a different sort of twitch bilaterally on the dorsal portion of my feet. I can't feel these twitches but I can see them, and initiate them with contractions of my muscle. This I'm assuming is the effect of denervation, the muscles become a bit more "excitable". I suppose time is the best test for the severity of Neuropathy.

It's hard to believe that it's been an entire year since twitching began in my left shoulder, and has spread throughout my body. I had an EMG on two limbs last June (four months into my twitching), which was clean, and I was diagnosed with BFS. Now on the one year anniversary of my twitching, my EMG shows widespread denervation. I find myself at a complete loss, but I suppose there is one thing I've noticed.

The original Neuro who diagnosed me with BFS, would always put his hand on my shoulder and tell me that "I would be fine". After he received my latest EMG results, and the last time I met with him to say hello, he didn't say I would be fine, just "good luck" :?

Thanks again to everyone for all the help! I'll be sure to update if anything new pops up =)

 

[FirstTermMed]

Ali, I've been reading along for a while and don't really have anything all that constructive to say that hasn't been but can recounting a story from 30 years ago might interest you. I had a good friend who went to Nepal to do some mt. climbing, had a great time, all good, came home (US) and got neurologically and generally very ill, he was well connected medically and saw the best of the best doctors and then some but about 9 months later, some 30 lb's lighter, with little muscle mass left and totally at his wits end, knocking on deaths door, with no answer to his ills anywhere in sight, in utter frustration he himself pulled out an electron microscope (which he used at work) and started looking into himself, literally, bits and bobs, can't recall now where he found "it" but he found "it" and then since no one in the US had a clue what "it" really was they had to get the doctors in Nepal to tell them exactly how to get rid of "it". That treatment worked, just like that, he was in hospital some several week but he make a full recover. Good thing he had access to the scope.

That's one heck of a story! I wish I could go back to Grenada and ask the Doctors there, but I think they might just advise me to grab a rum/coke and go lime on the beach (which actually sounds like a really good idea hmmmmm ). Alas I have no access to an electron microscope, just a magnifying glass, and from what I can tell I have very dry skin =)

 

[kiwisally]

Well see now, I can sort you right out, a little olive oil in your bath, sweet as, best of luck to you mate.