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TomR1972

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I need some further input on als symptoms. My situation started out with a rather quick onset of extreme fatigue that affected legs and arms. My legs felt like rubber a sensation that wax and waned but was not completely gone. I had a bad headache, problems focusing and did not have the energy to want to move much.

Over the next 2 months I have had muscles that tire frequently but nothing close to that 3 week period of extreme fatigue which had me in bed almost all of the time outside of work. I now experience dull aching pain in hands and feet here and there, my right leg gets a gnawing dull pain from butt down the side of my leg. I have had shoulder pain, neck pain that comes and goes. I have had days where eating chocolate tires my jaws but others days with not a problem.

I have been tested for I think everything under the sun. I have bad days and better days but the extreme fatigue/weakness I had is better by about 80% but not gone. I lost roughly 12 pounds in those 2-3 weeks, changed my diet to bad food and have gained it all back and a few. However I can't help but feel that I've lost muscle. The only location on me that could possibly show atrophy is on the inside of my elbow it looks slightly indented. I have noticed that outside of my fattened belly region, my shirts fit looser.

I do have fasciculations which are far more prominant on days I don't feel as well. I have gotten more jerks but not many of a finger or an arm. I and my fiancee have felt buzzing vibrating like motions at times. A week ago I moved a lot of items which made my right arm shake when holding a piece of paper. I do get

The few things that make me feel that it may not be als are the aches and pains I feel. Also those 3 weeks had me feeling as if my life was over, I was that weak/tired/fatigue for no reason whatsoever. Yet I have felt much much better and as have mentioned feel at best 80 to 90% of myself. These situations make me feel as if it may be something else but of course I am trying to hold onto any hope.

I know everyone presents differently and I may be one of them but was hoping to get some input that might help me. Please let me know if you think
 

brooksea

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Tom

Have you been evaluated by a neurologist that specializes in ALS? There are a lot of diseases that can mimic ALS.

CJ
 

TomR1972

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Ugh

I have yet to go to a "ALS CLINIC". I have seen a very respected Neurologist and he doesn't want me to even think for a moment about ALS. That is based on the fact I had some tests yet to take to rule out other causes. As more and more of the tests come back ok I am scared to death. He also knows I am about to get married and doesn't want me to jump to conclusions and stress her out which to a point I can agree with.

The only thing to come back out of all my tests are some kind of positive for an antiphospholip antibody and he referred me to one of the top rheum's in our area. I saw her and she doesn't think that my symptoms are als but she also isn't in that field. The antiphospholipid antibody test she feels is probably nothing at all to be concerned with, shouldn't be causing me the symptoms I feel and is testing me one more time which is standard protocol. If it comes back positive again she notes the only thing I'd recommend is to take an aspirin a day for clotting issues.

I have this strange sensation that suddenly one day I will just degrade quickly leaving my to be wife screwed. Worst of all if this degrading doesn't come soon the she will probably be pregnant and with my luck thats when i'll start going down hill. I can't live for the future but I also cant take it away from her. I have to live day to day something I have never had to think about before. So do I not have kids thinking i'll go to pot just to find out that I may be fine for a good number of years? Life can be so very cruel and I feel for all of you far more than I ever could have imagined until these symptoms started to appear.
 

brooksea

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Tom

The pain you are having does seem to be unusual for ALS, but I'm not a expert. You really must get to an ALS Clinic to visit a specialist. You have so much to look forward to and all this agonizing is just going to drive you nuts!

But...if you do have ALS, you can still be a daddy and a husband. If you look at the posts on this forum you will find there are many dads and moms, husbands and wives. I would like to think that your soon to be wife would love you whether you had ALS or not. And of course your children would love you and think you were "normal."

You are reading too much into this. How young are you?

Please, Please get to a clinic. Don't torture yourself and your girlfriend any longer. Don't mean to be harsh on you.

CJ
 

TomR1972

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ugh

I am 35 so technically I am young to have this but from the large amount of research it seems not to young to have it. There seems to be a huge thought that you don't have it if your not mid 40's or higher but from what I have read thats BS. Who knows the only thing that gives me hope is that i have felt a bit better though i still have some moments that pop up here and there.
 

Saubier

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Tom,

Never heard of anybody getting any better with ALS, but I'm rather new to the condition. I know I haven't gotten any better.

Pappy
 

Jamiet

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Tom, i had the fatigue issue, come and go. it's still there, but the fatigue got better, now, it's stamina that's getting worse. fasics are worse, all over, cramps, chills, etc etc

I'm 32, so your not alone. I'm undiag and have about the exact same problems.

Don't mean to scare you, but you should see an MD Specalist or ALS specalist to rule it out.

I don't have weakness, but have lost muscle. I lost 15 lbs, then gained it back in the form of fat.

Also, ALS can be intermittant (come and go) to some extent. it's generally downhill, but there are good and bad days for some people, but a month is not enough time to examine the chart (downhilll)

I don't mean to scare you ,but want to be brutally honest.

do you have cramps?

Good Luck

Jamie
 

TomR1972

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ugh

Can you define cramps as you feel them? I get pains and sore muscles to the touch however not sure if what I feel are cramps or just pains?
 

brooksea

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Tom

No, you are not too young to have ALS. That is precisely why you must get to an ALS Clinic. I thought you might have been in your early 20s, which is still not too young but highly unusual. Just trying to get the parameters of your situation.

Do you live near and ALS clinic? The quicker you can get diagnosed, the quicker you can get on with living life to its fullest as best you can.

As to the cramping, my husband gets cramping to the point that his hand or arm or both will spasm and must have assistance to uncurl his hand and rub out the whole darn cramp. right now he only gets cramps in his upper body and upper limbs.

I hope I didn't offend you in my last post. I just know that what my husband went through going from doctor to doctor when we pretty much new what it was, well it was pure hell. He went to his GP that refused to tell him what he thought he had so we looked up everything just as you have. Then he went to 2 neuros and both said ALS. Well he didn't want to believe it. So we have seen a total of 4 neuros, the final being at Emory Atlanta ALS clinic. Same diagnosis.

So what I'm trying to say is don't go thru the same hell we went thru if you can help it. Go straight to the ALS clinic...do not pass go. Then you will be sure.

I am sorry for what you and your girlfriend are going thru.

cj
 

Omar

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Hey Tom,

So far you are still doing tests, and as long as your Neurologist is pretty much sure that you don't have ALS, then he is probably still waiting for some results to rule out what could be your problem and whether it is a neurological problem or just a stress thing. So keep on following up with him and in case you don't trust him or don't feel comfortable with him, just see another Neurologist as soon as possible. And I already see you are very stressed and paranoid from having ALS so calm your self down and believe me if you are spending much time reading about ALS or some other possible diseases then stop it cause it will stress you even more. So wait and don't jump to conclusions.
I remember that a day after my diagnosis and after reading a lot about ALS I had a panic attack and felt that I was going to die and that ALS is preventing me from breathing so I called the ambulance and it was very clear that I had breathing problems because of the stress. So I really advice you to calm yourself down and to keep on following with your neurologist and to relax and enjoy ;)
I hope that your problem could be solve soon as well

Omar ;)
 

TomR1972

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Ugh

I appreciate everyones advice! My biggest concern right now is to try to make sense of my own symptoms and apply them to what others have. I had the nerve and emg ? done there was no popping sounds on the needle muscle test but there was a constant shhhhh sound that made the dr ask if i had back pain. I didn't but that comment scared the hell out of me. Regardless I know I have fasciculations, they only tested maybe 5 to 6 needles and said I was normal. Well from reading, normal doesn't mean crap. Just trying to make sense of my symptoms, and wading through the Dr's BS that they feel they need to say in order not to offend or get sued.
 

zac111

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tom,i had some of same syntoms that you are haveing so trust me when i say listen to them look up the nearest als center to you and give them a call and go see them regular neruos dont have a clue when it comes to als i had days when i started to have twithes when i had problems where i couldnt hardly walk a lot of pain and fatige, the pain is gone and i still have twithes and muscle spasms the als doc told me that if its als the twithing wouldnt stop but trust me go to the als clinic there 1 trip will ease your mind either way, shawn
 

TomR1972

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thanks

Thanks Zac I am glad you are not being diagnosed with ALS. However I know it must really suck still being in limbo of what you are suffering from, life is very cruel at times.

Thanks everyone for their advice and comments. I am tempted to wait until after my wedding in early June before I make my 2nd attempt at obtaining the "devistating news". At that point it would still be early enough for me to realize having a kid would not be the best idea for "him/her" or my soon to be wife. Sucks to think I waited all my life to find the right woman and when I do my life is possibly in limbo, so cruel.

Enough about me, everyone here is going through their own personal hell, I admire those that can deal with it better, as I know I can not be that person.

I get so tired with Dr's, never cared for them and now thats all I will be dealing with. They have so many alterior motives/variables running amok that the patient is strung along like a teenager on a family vacation. Seems not only for me but other that it takes a good 10 Dr's to find that one who honestly cares about the patient and not the outside influences. Many are like puppets with no backbone to stand for their own beliefs.

Well if anyone has more to say I am all ears or being on here all eyes.
 

Sunshine

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Hi Tom. Try to think positive. I know it is hard. The odds are in your favor that you don't have ALS. Try to find a doctor who will listen to you. Even if you don't have ALS, you still want that doctor to find out exactly what you do have. I wouldn't hold off on your plans. Discuss with your girlfriend how she feels. I would go for it. Life is too short. Try to find some way to relieve the stress. Stress can make everything worse. I am wishing the best for you. My husband and I are going through the whole process so I know how hard it is. Take care. Sunshine
 
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