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K-Town

Active member
Joined
Jun 8, 2008
Messages
32
Reason
CALS
Diagnosis
06/2008
Country
CA
State
ontario
City
K-Town
Hey there. so My husband (DX June 08) has some symptoms that are not common with ALS. i was wondering if anyone else has the following:

* redness, tingling or burning on face. runs in cycles. on for a few days, clears for a week, then on again. (skin kinds flakes after a flare up)
* feeling like there is congestion, or pressure between the eyes, but inside your head. Ear guck, not wax, it cream colored.
* electrical currents, or zaps, shooting through the body ( this is not all the time, rare but happens)

EYES
* Double vision in both eyes, more dominant in one
* some days eyes will be burning
*extremely Light sensitive (eyes) some days

* MRI notes a "Brighter area" between c4 and c5 (i think) Radiologist notes it, but does not call it an abnormal MRI

* No response to Lyme disease therapy 6 months IV

Thanks for your time, and comments :)
 
DX June 2008. i dunno why the face appeared
 
You must have pushed on one of the smile buttons on the side. Welcome.. Some of the stuff you mentioned is familiar some not so much. But that is the thing with als. Maybe he should receive a second opinion, or third.
 
Hi K-Town, the smiley appeared because you put in an 8 followed by a right bracket with is the code or shorthand for that particular smiley 8). It has happened to me a few times and I finally figured it out.

As far as the unusual symptoms are concerned I can offer no help except to say it sounds awful and I hope that you can get them remedied soon.
 
K-Town ... yes, I have some of those. My double vision started at the same time as my slurred speech. Originally, it was both distance and close vision, but after about four new glasses prescriptions ... and I'm not driving any more; it was most noticeable with lights at night ... it is restricted to double vision while reading. The eye doctors tried to tell me it was just blurred, but I don't think so. I would not only see two distinct objects with space between them, but sometimes one would be higher than the other. My near sight continues to deteriorate. In reading magazines or the newspapers, the columns will swim over each other. My distance vision is stable for now. (knock wood) No one has been able to explain it. I consider it one of my "left-over symptoms!"

I also get the burning eyes, esp. when tired.

My face does turn bright red, esp. in hot weather, or when talking to people, or when stressed. I attribute this to rosacea, and used a topical cream for a while (which actually did nothing). This started a few years before ALS symptoms, and I self-diagnosed it as rosacea and doctors went along with it. I first noticed it at work when a co-worker said "do you know you're as red as a lobster?" I looked in the mirror and went running to the nurse's office. Nobody could account for it. B/P, temperature, pulse ... all normal. Perhaps this is connected to ALS? I don't know. I gave up on the cream and just go with it.

Does your husband have British Isles ancestry? I understand rosacea is limited to those groups. Anyway ... thanks for posting these symptoms. I am always SO GLAD to hear of someone else with ocular problems (not that I wish it on anyone, but like to know I'm not the only one), and any other of my oddball stuff. I have heard of 4 other PALS who have vision problems. It may be a hidden variant that no one knows about because neuros keep shrugging it off.
 
* electrical currents, or zaps, shooting through the body ( this is not all the time, rare but happens)

This happens to my husband a lot! He says it feels like buzzing electrical current and can not stand it! It seems to happen more often after he has over done activity.

Sorry he is having difficulties.
 
Have they given thought to PSP? That is what we thought Jim might have at first - his maternal grandmother had it. Similar intial sx - main difference is the eye involvement - which is why the dr's said Jim didn't have PSP because a main sx is the eye involvement which he doesn't have.
 
* redness, tingling or burning on face.
* Ear guck, not wax, it cream colored.
* electrical currents, or zaps, shooting through the body ( this is not all the time, rare but happens)

Yep ... have the red face , no rosatia, but instant sunburn type red. for many years , just shows up - dont know why. Eventually fades back to normal color.

ear guck - I can load a Qtip ...

The shocks went away after my diagnosed. They were sporadic , usually just as I was dropping into sleep.
Then there is the real electrical shocks ... I have been zapping myself since I was five. Never really feared electricity. Hit by lightning once as a teenager - OK .. I fear that now.

Are any of these related or a cause for ALS - dunno . Doesn't really matter now does it. Live for today , the past is behind me now.
 
Okay my friend Glenn let me get this straight you have ALS and got struck by lightening. Ok you have to play the lottery.. Maybe you can win enough to cure ALS... I would not put that past you.... :grin::grin::grin::grin::grin::grin::grin::grin::grin:
 
Thanks for mentioning PSP. That was my second diagnosis, I'm sure because of the vision thing.

It's certainly worth checking out, for anyone with ALS symptoms and difficulty with near vision. This is what Dudley Moore died of, I believe. It's not any nicer than ALS ... It is very, very rare, and is part of the Parkinsonian group of diseases. My second neuro tried Carbidopa on me (a Parkinson's med that my husband now takes successfully), and had no results. He said he had never seen a case and had never expected to see one in his practice, but thought my symptoms could be it.

You live longer with PSP than with ALS, but it's no fun. Fortunately the next neuro I stumbled into said no PSP, it is surely MG and I was off to the races again.

Geez, Glen, your face turns red, too?!? (Well, reading your posts, it should, but still ...) I am amazed at how many unconnected things are suddenly maybe kinda sorta a product of ALS. It may not "matter" ... but then again, it may. I hope they figure out this mystery before I croak. They don't have to cure me, just tell me what the hell is going on!
 
hi ktown.
like cj's husband i get the buzzing,mostly my legs.
sometimes i do get a shock like feeling before a limb jerks.


glen.
zapping yourself since you were five,struck by lightning as a teenager:roll:.........................now it all makes sense,i new you had some faulty wiring somewhere:lol:
 
Beth gives the correct definition on page 2.
 
hi ktown.
like cj's husband i get the buzzing,mostly my legs.
sometimes i do get a shock like feeling before a limb jerks.


glen.
zapping yourself since you were five,struck by lightning as a teenager:roll:.........................now it all makes sense,i new you had some faulty wiring somewhere:lol:

You think thats funny ... here is a little bit of irony for you. I have played games online since the 90's. Guess what Nickname I used .... Zombie . Who knew ?

Glen
 
Has anyone experienced dizzy spells that last only a few seconds? I have had small unsteady feelings hear and there since this all started but the other day I had two strong sensations while driving and that night when I laid down in bed the room started spinning and I had to sit up and open my eyes to make it stop. It happened a couple more times when I rolled over in bed during the night.
 
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