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notBrad

Senior member
Joined
Feb 26, 2015
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632
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PALS
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04/2015
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The coast of
Hi All,

First off - THANK YOU for that sticky! It is a sanity saver.

I'm pretty sure I do NOT have ALS due to a number of things that would contradict a diagnosis BUT it seems like the only thing the Doctors I'm dealing with want to discuss.

So what I'm looking to find out from the knowledgeable folks here is what questions and comments I can use to get them thinking about other things? I live in a fairly rural/isolated area so it's not as though I'm dealing with physicians who see a lot of different things.

Here's the situation. The only things that I've had that would lead them to think of ALS is the following (I've included why I think it's a red herring):

1. Some speech issues that started with some slurring but now resemble Spasmodic Dysphonia more than anything else. Reason I don't think it's anything to do with ALS is because it comes and goes, only really kicks in when I'm nervous or tired and I can "over-ride" it quite often.

2. Fasciculations in both shoulders and triceps. They are bilateral and almost mirror images from side to side so I think they're more likely due to some sort of injury (re: RSI, etc...).

3. Weakness in my arms. Again comes and goes, no atrophy, taking a Xanax actually seems to make it go away and most importantly it was at one time really bad (couldn't even un-button jeans, etc...) but then I quit taking my BP meds which had side effects of Hypoglycemia and dehydration and my strength improved SIGNIFICANTLY.

4. I have Hyperreflexia in both knees BUT only there and it is bilateral and has always been that way to some extent.

Babinski reflex is NOT present in either foot.

Had an EMG and the Doctor said there was some nerve damage but didn't specify where. My GP said it mentioned something about a 20 percent difference in the Nerve Conductivity part and something about Multifocal Nueropathy ( I got the distinct impression he didn't know the difference...).

So what things can I bring up to get these people looking at other things, tests, etc... besides ALS? My fear is they'll miss something that could have been identified and addressed earlier because they are so focused on it being ALS.

I mentioned how rare it is (ALS) and got the response of "Well, it's not rare if you have it". I brought up BFS and had that immediately dismissed as being unlikely ( even though I think my symptoms point more to it than to ALS ).

Sorry for the long post, some amount of frustration here... Thank you again for the Sticky and any suggestions on how to get the physicians I'm dealing with to broaden their scope some.
 
Well my first thought would be ask for a referral to a neuromuscular specialist to sort it out. It sounds though that maybe your nerve conduction study showed a conduction delay? That does make me think of MMN which would be infinitely better than ALS though you would rather have neither. But you need blood work mris and an emg done by a neuromuscular specialist if you have not had that yet. I get that you live in a rural area but you need to travel for this if it is not available locally.
 
Thanks Nikki. I have an appointment with a Neurologist at the end of April (don't get me started on that delay...) but it sounds like I need to really make sure I go to someone in that specialty if I'm understanding you correctly.

BRB, googling "neuromuscular specialist" to see who I can find...

Thanks again - that's great advice - and yes, while I'd prefer to not have either if I have a choice in the matter I'd rather have MMN any day of the week.
 
Yes do not go to general neurologist. You need someone at an ALS clinic ( if it was mmn I think they would be the ones to treat you. My clinic sees mmn I know. ) who did the EMG?
 
I would go to the OHSU ALS/MD clinic in Portland. Would be helpful also if you could summarize EMG/NCS reports you have to date. Also, you might get an earlier appt. in Portland if one of the rpts actually poses differentials like ALS vs. MMN, since early tx is desirable in MMN.
 
Thank you both for the very excellent advice! I'll reply tomorrow afternoon in detail. I have to head out early tomorrow for a meeting and a doctors visit and just wanted to make sure you didn't think I ignored your posts and advice.
 
Thanks again and I'm running down when I can get seen by someone at the OHSU ALS/MD clinic in Portland and get seen by a neuromuscular specialist. Also, if anyone has a recommendation for one in Oregon please feel free to give me a shout.

Take care all!
 
OK. Spent 2 hours yesterday laying in the MRI machine while they did scans from my Brain through my Lumbar both with and without contrast.

They also did a GM1 anti-body test as well as some others over the past week. Docs office just called and said they want me to come in on Monday instead of waiting until 3/18 when I was scheduled to come in and discuss results. They said all the results won't be in but they want to talk anyway...

On one hand that scares me because it sounds like they've obviously found something BUT OTOH, the GM1 test and a couple of others won't be in by then which makes me hope what they're thinking would require starting some sort of immediate treatment which makes me think MMN or possibly Guillain Barre since they are both treatable and starting ASAP is important.

I mean IF it was ALS there's no need to rush me in for a consultation, right? Getting me in a week early isn't going to make a bit of difference in things and certainly not prior to the GM1 anti-body test coming back which would rule out GBS or am I just grasping at straws here?

Thank god for wine, it's gonna be a long weekend... ;-)
 
Who called the neuro you saw already? You have not been to the neuromuscular specialist yet? Or have you? What tests besides the MRI have you had that they might want to discuss?
 
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It was the Doc I saw who ordered all the tests and also performed the EMG. He's a Physical Medicine specialist specializing in Musculoskeletal/Sports, Interventional Spine, Spinal Cord Injury, Traumatic Brain Injury, Stroke, Pediatric Rehabilitation and Electromyography.

He works with the Neuro (who I can't get in to see until the end of April) so he's trying to get me the tests, etc... ASAP and is also sending them th OSHU in Portland as recommended by lgelb.

My PCP read part of my records and they did mention something about MMN (but my PCP is pretty out of his league here so who knows...).

The thing I keep hoping for is that if they were convinced that it was ALS there would be no rush to pull me in prior to all the test results coming back... But I don't know what other tests results he's seen in addition to the MRI.
 
maybe there is something on the MRI they need to discuss You are right this does not seem to be likely to be something about ALS both with the urgency and there would not be anything on any tests since the EMG that would add to any suspicion of ALS. Is there a chance he reviewed your EMG and NCS with someone? Then maybe this is about MMN which would be awesome
Sorry you have to wait over the weekend and wonder
 
Good question(s). What would the MRI tell them or not tell them I wonder... I guess obvious thing would be a tumor of some kind but I also wonder if there's an absence of something they'd look for in an MRI that not finding it would trigger the urgency as well...

IOW, a case of "Well we didn't find XYZ so let's go ahead and move forward on MMN/Something else because it's a good probability and starting treatment now makes sense...". There is a chance that he reviewed everything with the Neuro because my wife did visit the office and managed to catch the Neuro there and meet him and... well, she's one of those people who is pretty good at making things happen when she wants them to.

I dunno. In either case, we have some really nice wines we've been saving that probably won't survive the weekend... :) So at least I've got that going for me (Caddyshack reference - it's better if you read it in Bill Murray's voice).

And thank you SO much for the support and helpful info!
 
MRI came back with some issues but nothing that the Doc feels identifies MMN as a cause which now makes him lean back to ALS. They are running tests for GM1 anti-bodies to check for Gullain-Barre as well as a test for Lyme (had a serious tick bite that was infected but went on antibiotics immediately so doubtful that's it).

That said, I think the Doc who actually read the MRI may have missed something. He specifically notes "Mild multilevel disease with desiccation and disc bulges, slightly more pronounced at C6-C7 level. No spinal cord compromise or nerve root impingement". OK, but my weakness is specifically in my thumbs, in identical locations in both hands which co-incidentally is affected by the C6-C7 area... So I have bilateral weakness in identical locations in both hands without any atrophy but they want to automatically assume it has to be ALS. From everything I've read here and elsewhere, while that's possible it would be insanely rare.

Anyway, he finally admitted that he's at the end of his knowledgebase and is trying to get me into a Neuro-Muscular specialist, which is good except for the fact that if it is MMN then the sooner I start treatment the better the chances of reversing the damage already done. But he's not sure the NM specialist will see me until the general Neurologist sees me first and he won't be able to see me until the end of April. So I could end up going months without treatment that could make a substantial difference.

One thing that is really p***ing me off is I get the feeling that all of the Docs I've been seeing so far have some sort of reason to keep me in "network" - they all work for a Clinic Conglomeration - as I cannot seem to get them to refer me to anyone outside of it even though my insurance would cover it. Also, when I ask for copies of records for other doctors (my Chiro for instance) they provide me with the report from their people but not copies of the actual raw test results. Anyone else experience this?

As a matter of fact they specifically suggested that it was doubtful OSHU would even bother to see me but they would send over the referral anyway.

Any suggestions or references to specific Doctors I could have the test and records sent to in order to get a second opinion?

Also is the any benefit to posting any of the EMG or MRI findings here for member feedback and/or amusement? ;-)
 
So they did do a referral to a neuromuscular specialist? Make sure that they send your tests especially the EMG and the NCS. If those are suspicious for ALS or MMN they should see you.
Although there is often something on MRI in the brachial plexus in MMN I don't think its absence rules it out. If you want to post your EMG and NCS feel free. Sometimes there is something we feel able to comment on.
Until you get to the neuromuscular specialist continue to have hope. Re timing if your antiGM1 AB is positive that will almost certainly get you an appointment quickly ( but if it is negative it does not fully rule out MMN)
 
Thanks Nikki - Here's what the Doctor who performed the test wrote. He also wrote something about muscle atrophy in the upper extremities which I DEFINITELY have not had (the wife and I went back through photos over the past 20 years and there are very little if any changes and I actually look more muscular now. I asked him about it and he did a quick strength check of my hands and arms which was fine and didn't seem to even know what I was referring to...

MOTOR NERVE CONDUCTION STUDY

Left median motor demonstrated normal distal latency and amplitude across the wrist however there was a greater than 20% drop in amplitude between the wrist and elbow stimulation sites and a mildly decreased conduction velocity.

Left ulnar motor study was within normal limits.

Right median motor demonstrated normal distal latency and amplitude across the wrist however there was a greater than 20% drop in amplitude between the wrist and elbow stimulation sites.

Right ulnar motor study demonstrated anormal distal latency and amplitude across the wrist however there was a greater than 20% drop in amplitude between the wrist and below elbow stimulation site. No significant drop in amplitude or conduction velocity between the below and above elbow stimulation sites.

Peroneal motor study was within normal limits.

Right tibial motor study was within normal limits.

F-WAVE STUDIES

Bilateral median and ulnar F-latencies were within normal limits.

SENSORY NERVE STUDIES

Left median sensory study to digit 2 was within normal limits

Left ulnar sensory study to digit 5 was within normal limits

Left median mid-palm study demonstrated a mildly prolonged peak latency.

Left ulnar mid-palm study was within normal limits.

Left median sensory study to digit 1 demonstrated a normal peak latency in comparison to the left radial sensory study to digit 1.

Right median sensory study to digit 2 was within normal limits

Right ulnar sensory study to digit 5 was within normal limits

Right median sensory study to digit 1 demonstrated a normal peak latency in comparison to the right radial sensory study to digit 1.

Right median mid-palm study was within normal limits

Right ulnar mid-palm study was within normal limits.

Right sural sensory study was within normal limits

NEEDLE EMG EXAMINATION:

Please see attached tables for all muscles tested in the bilateral upper extremities, right lower extremity and thoracic and lumbar paraspinals. (Cervical paraspinals difficult to study due to poor patient relaxation.

All muscles tested in the left upper extremity demonstrated many fasciculations.

Left 1st dorsal interossei demonstrated 3+ fibrillations and positive sharp waves.

Left abductor pollicis brevis demonstrated 3+ fibrillations and positive sharp waves with greatly increase duration and amplitude.

Left extensor indicis proprius demonstrated 1+ fibrillations and positive sharp waves

In the right upper extremity, many facsciculations were noted in the biceps, and triceps.

Right 1st dorsal interossei demonstrated 3+ fibrillations and positive sharp waves. Meds: Right abductor pollicis brevis demonstrated 3+ fibrillations and positive sharp waves with greatly increase duration and amplitude.

Right extensor indices proprius demonstrated the sharp waves with few fasciculations.

Right tibialis anterior demonstrated 2+ fibrillations and positive sharp waves.

Right peroneus longus demonstrated 1+ fibrillations and positive sharp waves.

Any thoughts would be appreciated.
 
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