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Egil S

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Hi, I've been reading posts here for a week now. I've suspected syptoms as early as 6 years ago: my legs seem to be "dying", were flabby even though I bicycled every day. I had to buy a used C-PAP two years ago and am dependent on it to sleep. This winter I had a viral infection with lethargy and fatigue lasting months and a few episodes of motor paralysis. When I finally recovered from this I began to have greater weakness in my legs and back until the paralysis returned with greater intensity and on a daily basis. The paralysis occurs whenever I lay down to rest though rarely when I first wake up in the morning. I have to lay down frequently to rest. I have signs of hyper-reflexivity. My trunk muscles have become harder than any time I had tried to work-out in the past.

Cancer was "ruled out" but only with blood tests. My doctor didn't recognize the ALS symptoms. I suspect FTD (dementia) as well so she wanted me to see a psychiatrist. I begged for neurological referral which was granted. I did not speak of ALS. I wasn't confident enough then and I was very lethargic. I'm seeing a different doctor tomorrow. I will try to get a referral to the local ALS clinic instead of wasting time with the first referral.

I'm not afraid. I guess it helps that I've worked with PALS as a Respiratory HHA. The ordeals they went through were past, I did not know of these struggles. If I choose to vent, I can choose between several vent-houses here with staff I've known and worked with.
 

Ms. Pie

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Your symptoms don't sound anything like mine. ALS symptoms never come and go. They just go and go and go. Hope you get it figured out soon!
 

rmstudier

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Are you saying you aren't afraid als because it's not that bad and you'll be comfortable ultimately in the "vent-house"? Just asking for clarification.
 

Egil S

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ALS symptoms never come and go. They just go and go and go. Hope you get it figured out soon!

That is one sign I hadn't asked about. I have the set of symptoms for ALS but the weakness varies from minute to minute.



Are you saying you aren't afraid als because it's not that bad and you'll be comfortable ultimately in the "vent-house"? Just asking for clarification.

I think its because I interacted with fairly well-adjusted PALS. I was more afraid by the mystery of my symptoms in the past. I've seen some scary posts though so maybe I should be afraid. I'm on Prozac too which keeps me calm.
 

Alyoop

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I think maybe you have a severe case of health a anxiety and the doctor suggesting the psychiatrist was aware of it. Just reading your post, points to a major problem with the w ay you are thinking. It sounds nothing like ALS and the fact you are seeing a neurologist is a good islets, but deciding you need an ALS clinic, is more of the " strange" way you are looking at things. It's not for you to come up with a diagnosis, you need to leave it to the doctors.
Did you self diagnose the need for the cpap? I hope not :(

Seeing a psychiatrist to help get things straight with your thinking, is a great idea. Take your dr up on the suggestion

I am not saying you have nothing wrong, just not als
Aly
 

Ms. Pie

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I don't think you do have ALS symptoms. Your symptoms don't sound anything like ALS is what I'm saying. Don't diagnose yourself. Let a Dr. diagnose you.
 

trfogey

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It's going to be a long weekend. :roll:
 

Al

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I was thinking that Allen. Canada day is Friday so we start and finish earlier than you do.

AL.
 

kmendsley

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Ok, I don't know if it is the creepy line "I am not afraid of ALS"...no one has the RIGHT to state that until they have been diagnosed with the disease and have come to peace with it. No matter what your job is, this kind of thinking is very unhealthy and unblanced pyscholgically.
.... Or maybe it is the fact that you refuse to write down any of your symptoms besides...

"When I finally recovered from this I began to have greater weakness in my legs and back until the paralysis returned with greater intensity and on a daily basis. The paralysis occurs whenever I lay down to rest though rarely when I first wake up in the morning."

Which indicates that you have an "on and off" again paralysis and weakness....this is not ALS. I am not saying that you don't have something wrong with you...but ALS doesn't come and go in waves throughout the day. It comes..and it stays...and gets worse and worse.
And the fact that you haven't even seen a neuro yet, and dr. hadn't suspected that you had any need to do so...other than the fact that you probably kept coming back insistent and not changing your mind so they wanted you off of their back.

In all seriousness, please go seek some pyschological help. No one should be 'okay' and 'not afraid' of a possible ALS diagnosis.
 

larrybird

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Your not afriad of als.Maybe you havent done enough research on the disease yet.I dont know anybody wh wouldnt be nervous about getting an als diagnosis, including myself.The people here on this forum live with als everyday and do so with unbelievable courage and strength.So unless you ve walked a mile in their shoes please dont act like als is no big deal because it is.Sorry maybe you meant to say your not scared of dying since its something we will all have to face at one point in our lives, that and taxes.Hope your healthy and you make the most of your life and donate to the cause or get involved as im planning on doing.Goodluck yo you.
 

notme

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I'm very surprised that your doctors didn't tell you that ALS weakness and paralysis doesn't come and go.

Not afraid of ALS---rolling eyes here--99% of the people that post on this "DO I have" section are here because they're terrified of a disease that will ultimately be a death sentence.

The paralysis you describe when you lie down to sleep sounds very much like sleep paralysis. Nothing moves--but the mind still functions. It's terrifying--and becomes more frequent during stressful times.

Were you prescribed a C-pap or did you go out and get one on your own? You do realize that if you have some sort of respiratory loss of function, the c--pap is not the correct equipment. Sleep apnea needs diagnosed.

Good luck to you.
 

Egil S

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Thanks for all the replies......

I do have some doubt about my symptoms as to what it is. If I speak of it I speak only in terms of possibility and the need to eliminate all other possibilities. I haven't any other ideas of what I've got and how to label it.

I returned for a second opinion and found it more helpful as the doctor checked over the strength of various muscle groups as well as my reflexes. Babinski was negative so far but my responces seemed exagerated to me. The doctor was in favor of seeing a neurologist which I will on August 4. Seeing a psychiatrist can take forever here, apparently there is a shortage in Minnesota. I'll ask my first doctor what she meant by it, my guess is that I might need some other medication perhaps for Dopamine.
 

notme

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and note that the questions we asked were ignored. Did you self-prescribe the c-pap?
 
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