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billyd

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Well now have had a sleep study, Not much of a study as the first two hours could not fall asleep so they allowed some zanax which got me four hours. No one rushed in with a oxygen bottle or mask so I guess there was no emergency in that 4 hours.

So I have gone from a "you don't have als" verdict from Pa. hospital to a visit to drexel next week as no one seems to have a plan or idea about my progressing symptoms, not that I am looking for bad news but I am ill and I know my body. I think the cruelest part is having someone make a bold statement about your condition and then family members believe it is all anxiety. I do know I am not sleeping, have some difficulty swallowing, have cramps in both legs and shoulders, weight loss and now pain in the sacral region of lower back. It doesn't feel like happy holidays to me. Sorry to bring anyone down but am feeling pretty miserable right now.
 

crystalkk

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Billy,
I total understand you....
I don't know if family & friends are having a hard time to accept that we sick.
Last week my best friend asked me if I was making myself believe that I am worst than I am, she has not seen me in 3 months, and I quess she does believe the progression I am having.

I can't stand the fact that when a doctor can't find something they say it's all in your head, or axienty.

Who are you seeing at Drexel? Did Dr. MCCluskey send you there?

Did they tell you the results of the sleep study?
 

lhagsjr

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Sleep

Im not understanding all this talk about sleep and its relation to ALS...Billy, Im saying this to be nice. U need to CALM DOWN. U are rushing for a diagnosis but honestly nothing is going to come quickly.
 

patricia1

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I agree If you have all those symptoms and they are on your clinical exam by a als specialist Then you have a big problem But if you say you have these symptoms and they are not apparent on exam Then yes you may have anxiety. Als isnt DX in days it may take years Sorry
 

billyd

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Drexel

Dr. McCluskey is not sending me anywhere. His DX is benign cramps and fasics. Does not address the swallowing, weight loss etc. No plan for testing except the sleep study. I hate the possibilities and pray I have a benign or treatable condition but I can't deny I feel like crap and I hurt and have swallowing, choking and sleeping issues, pretty hard to ignore and blame all on anxiety in my book. But if so then treat me don't just send me home with no plan. And yes I am torturing myself before I have reason but the speed that this has happened to me is even more frightening. If I could get one nights sleep or even more than 2 hours uninterrupted I would be ecstatic. I apologize for complaining as I know most of you are suffering and hurting far more than I and maybe this is not the place for me to vent.
 

lhagsjr

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Sleep

Im still not getting the link to your sleep problems and ALS. Heres another one who posts but doesnt listen to anyone else.
 

ltr

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Billy, I have to agree with Lou....I asked you once before, but you might not have read my post.....do you have twitching, weakness, atrophy....any sign of ALS? I agree that you are having a rough time and feel very sick, but why do you think it is als? And have you tried Ambien or one of the sleep aids?
 

billyd

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I have diffuse twithching and constant in left toes verified on exam and emg with no pathology noted. I have weight loss. Cramping and stiffness both calves three months. Weakness in jaw and shoulders muscles. Swallowing issues. Choking trying to clear junk in my throat. Shortness of breath when lying down, and worst of all for me constant insomnia, short sleep cycles of two hours or less awakening to having to hyperventilate for a few minutes then repeat each time every night. If I take a sleep aid I wake in a sweat or headache. No true atrophy but loose skin hangs off lower arms. Blood pressure and heart rate constantly elevated, difficulty catching my breath after mild exertion.

I am truely sorry and apologize to all who have been diagnosed or are ill with this disease and I hope not to be diagnosed. I have loaded all my symptoms into a big box and dumped them on myself. I hope I am wrong and I will not post anymore if that is the concensus.
 

crystalkk

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Billy, don't be silly we are all here for each other.
 

billyd

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concern

OK, then I will lay it out there completely, this was my concern, and how I made the connection, respiratory onset, plugging in my symptoms right or wrong and went rushing for help with the breathing issues that were not explained with my restrictive airway issue as none of the regular doctors would know what to do until you have heart or respiratory failure which has happened in people with normal FVC's.
 

Midnight

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rapid onset...

Hi Billy,

I know how frustrating it is when you are laying down and cant get air. It is scary.

Although it is different for everyone, it seems like most people that have a diagnosed didn't have rapid onset of symptoms. It seems like my symptoms came on more rapid than those diagnosed with ALS (very similar to bulbar ALS) & they are thinking MG. Although it seems doom always looms in the back of everyones mind, mine included, I try to cherish health that I do have for now, even though it is compromised compared to last year, I am grateful to still be able to see, touch, taste, smell and communicate with you, even in pain or slower... at least I am able.

I have heard that some people have been diagnosed with MG and subsequently diagnosed with ALS....and on the other hand...I have heard that some people have been diagnosed with MG and gone into complete remission. So, since I have no control, I am voting for MG and remission. See what I am saying? People have no control over the outcome, but the journey (that you DO have control over) is what YOU make of it. There is even life after being diagnosed with ALS as you will see if you read this forum by the amazing people that contribute that do have confirmed ALS.

So, explore other diseases :-D. Unfortunately (& fortunately) there are SO MANY other diseases out there and so many symptoms overlap. If I were you, I'd go to an ALS clinic (again if you already went)...but specifically an ALS clinic because they really seem to be the most qualified. It is hard to get your mind off your body when it is failing you and fascics/breathing/swallowing are a CONSTANT reminder, but try to be hopeful that maybe it could be something else. Worst case you get diagnosed with ALS & you stopped to smell the roses in the process ... and perhaps best case may be something lovely like MS, Epstien Bar, Myasthenia Gravis, Lyme Disease, Lambert-Eaton, or a virus in your neurological system. If so, hopefully you will have been touched enough personally that you will get rich and with all that money ... find a cure for this disease.

And stop apologizing for yourself. I think most people can relate to you, so you are in a good place.
 

ltr

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Billy, I know it's easy for all of us to say when we read posts.....but your symptoms sound exactly how mine started. Before my twitching and weakness my heart rate would speed up into the 150's. I would get extremely short of breath and feel horrible. The docs could find no reason for this. I even went into heart surgery because they thought I had an electrical problem. I too would wake in the middle of the night with it. I was on beta blockers to control the heart rate and then a few months later I started with weakness, twitching and cramping. About a year later muscle biopsy showed polymyositis. They think it was caused from an autoimmune problem and have had a positive test for antiphospholipid antibody syndrome, but I have an appt. at Johns Hopkins in one month to get some answers. The questions I posted were only to understand your situation. Have you considered seeing a rheumatologist? They can run some real funky tests.
 

billyd

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All I know is whatever I have is moving too fast, and I know the majority of als is slower. But I also know that I can't work or even walk too far without being out of breath. I am uncomfortable even now typing as my shoulders hurt. Sleeping is full of anxiety with frequent waking. Cramps in calves. Had to go to emergency room last night because couldnt get my breath after taking out the trash, heart rate 150 etc. Wasted trip, they give you o2 when perfusion was 99! Did anyone check co2, or blood ph, no. I believe I will have respiratory failure or give myself a heart attack before I have a diagnosis of anything!
 

billyd

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ban?

No need to ban me. I will not post again. I can assure you I am not a nut but a previously fully functioning, hard working family man with some type of neuro problem who has become incapacitated and seeking answers. I will let my wife know about the site and she can let you know how it all worked out one way or the other.
 

vmd

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billyd;

I doubt if you will be banned. You are only sharing your concerns with others about the possibility of having a neuromuscular disorder. We are all in the same boat here, whether diagnosed or not. Some of us will not be diagnosed with ALS, but are concerned because of the lethal nature of the illness.
 
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