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Awidz

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sorry guys , have been having unsolved neuro issue for 10 months, now getting sent to mayo clinic in rochester in 2 weeks.

So i have had musular twiching in toes (really arch of left foot) that causes my toes to move, then it moved to my left leg, then moved to left eye, mostly over last 8 months, but took over neck by adams apple and my abdomin a month ago.

I have had a mri of brain and upper thorasic and and emg that all came out clean. But in past month i have noticed i slur my words some, not always and i have had some issue with food getting stuck when eating, drinking seems to be fine, but the tip of my tonque feels like it has been burned, weird sensation last couple weeks.

My question is my docs here all told me no als, no parkinsons, no ms. But i read all these test would not rule it out, am i just in a crappy area for docs that have no idea what they are talking about? i am just about to turn 46, worried about als, have 2 young kids and am sole supporter of my household. Terrified to go to mayo for testing, was there 16 years ago and they almost killed me literally with a procedure and swore i would never go back, but now have no choice.

Oh also 6 months into this started having nighttime erections 3-5 times per night that do not go away till i stand up or go pee, but called neuroligist on this and he said he sees nothing on spine scan that would be causing it, again are they all just blowing off? would i have seen more signs after 10 months of this if it was als they were missing, i have no atrophy in muscles, but some swallowing issue , maybe just in my head, but would an emg of my left side arm, legs and feet shown if it was bulbar als?

just dont get this swallowing thing last couple weeks, sorry has me scared. anyone that has any real answers i would appreciate it....thanks much
 
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lgelb

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Yes, if you had bulbar-onset ALS, we would expect an abnormal EMG.

Erection/pee problems should be seen by a urologist.

Everything else you have mentioned is subjective, and has seemingly been addressed neurologically with negative test results, so I would follow up with your primary care doc who can monitor you. If you do not have confidence in her/him, I would imagine there are others. And there are certainly academic medical centers closer to AR than Mayo, should you need one.

I see nothing you have written that suggests the negative EMG is misleading, or that you have any reason to be terrified, but a great deal that suggests you are dealing with issues other than ALS.

Best,
Laurie
 

Awidz

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just wondering, thanks for reply. i have gone through all the neurogist here in my area, they say i have to go somewhere where more patients are seen, since they have no idea what it is, they referred me to mayo. My pcp said there is nothing he can do, and referred me to the neuro docs here. Only other docs in my area are little rock, and have a 7+ month wait to be seen. We are extremely short on docs here. I Just dont know where else to turn, symptoms are getting worse and out of docs so headed to mayo which is $1700 in travel and hotel just to be there, out of options and scared they missed something like bulbar als here. Would bublar als have presented symptoms before now 9 months after twitching started?

thanks for reply
 

ShiftKicker

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Mod note: Awidz, can you please break up your text into paragraphs when posting? A solid wall of text makes it very difficult for some of our members to read.
 

lgelb

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When you say "bulbar ALS," you mean "bulbar-onset," which means that the first hint of illness you would truly have had would be difficulty that a health professional could see and document with eating, drinking, breathing and/or speaking.

Your story does not fit. It never will.

When docs say "I don't know what you have and you need to go somewhere else," it is for one of two reasons:

Your symptoms are concerning enough to require a consult at some more experienced center
They don't know what else to say and want to get out of the room

Your story fits under #2. ALS is not in your differential. A burning tongue and difficulty w/ consonants can be down to GERD, allergies, a nutritional deficiency, all things that a PCP is qualified to test for and treat. So that is why I recommended that you make a U-turn in that direction, for the help you need. And again, if your PCP is not up for it, find another.
 

Atsugi

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Awidz, a few things.

-- Your posts NEED to be in easy-to-read format, thanks. Many of our members are using special equipment to scroll slowly to read.
-- You didn't mention anything that would worry me the way you seem worried. Looks like you're twitching. Welcome to middle age.
-- I suppose it's possible you have only ignorant medical people in your area, but I doubt it.
-- Don't know why you're focused on ALS.
-- Neurologists only know neurology. You might have a problem with nutrition, sleep, allergy to meds, or stress-reaction.
-- If I was worried that I had a terminal disease, $1700 would seem cheap.
-- But again, I don't see any ALS there. Ask your PCP to investigate, but DO NOT tell the doc that she has to look at neurology only. Let her figure it out.
 

Awidz

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thanks for replies, will post in different way, did not know people used equipment to read.

yes had the run around by docs here, been a real issue, sent 7k last year on docs after insurance to be in same situation as when it started 9 months ago.

not focused on this just what i have read worries me, yes. And was worried on clean emg, but not really tested for bulbar als, and wondering if would show up even though neck/throat were not tested only left side.

appreciate all the info from people who know this disease, thanks for all the responses
 

Vincent

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An EMG would pick up abnormalities related to ALS anywhere they test regardless of where you were tested. You need to lose somewhere around 70% of innervation before you become symptomatic. You can go to Mayo for a 3rd opinion, but when you are told for a third time you don't have ALS you need to believe them.
Vincent
 

Awidz

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thanks, not going to mayo for testing on als. Just going there for them to try to figure out whatever it is that has been undiagnosed for 10 months now and getting worse.

Again thanks much for your feedback. It is reassuring.
 
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