Still have ALS Concerns

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Still have ALS Concerns

Postby Scboy on July 23rd, 2014, 6:14 pm

My torso muscles are always tight. It goes from right below my chest and wraps around my back to my shoulder blades worse on the left side. Is this weakness or spasticity?" I get shortness of breath at times during the day. I can't even run around the block anymore cause when I breath heavily my chest muscles feel so tight and I get this bloated feeling. My soft palate feels weird. Sort of like a numbing sensation. It comes and goes. I frequently feel like my nose is stopped up. It comes and goes as well. I'm really worried cause this all seems to be slowly progressing. I still twitch all over, but at this point that's the least of my concerns. Any advice or insight?
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Re: Still have ALS Concerns

Postby leaflea on July 24th, 2014, 11:40 pm

Scboy, not sure how long you have had this disorder, but over time you learn the whole nature of it is ALWAYS CHANGING. But do not make the mistake of confusing "changing" with "progressing." You said a few of your symptoms "come and go." That is NOT progression. That is CHANGING. With ALS, your concern, NOTHING "comes and goes." It ONLY goes, one way, no return. You lost something, it is gone and would not ever return to feeling normal again. It takes time to learn the nature of this beast.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Still have ALS Concerns

Postby Xina535 on July 28th, 2014, 7:54 am

Agree with everything Leaflee said! Coming and going is not ALS. Please, please keep that thought and her words with you when you get scared.

I have found it helpful to keep a quick daily log of my symptoms, and the grade of intensity, so that I can look back on days and see that on this or these days, the symptoms was gone. This is the data I keep:

Static data:
Body Part
Symptom
Initial onset date
Degree of issue (scale of 1-10, or Less, Same, Increased, Gone Away)

Data I add every time:
Log Date
Degree of issue

I also found it helpful to take pictures of areas where I perceive weakness or atrophy (like my hand). So when I want to look back, I can literally see it with my own eyeballs that nothing changed, although I felt like I knew for a fact something was wasting (because of anxiety). I don't do the picture thing every day, just when I think about it, like once a month.

I am going to bring my log with my to my next GP appointment to show her what all I am still dealing with and what new has come on board. Not sure if it will help, but maybe somehow it can show her a pattern of something being connected to each other. :?:

Just sharing in case you want to try it to see if it may help you.
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Re: Still have ALS Concerns

Postby Scboy on July 28th, 2014, 8:10 pm

Thanks Leaflea and Xina535 for your replies. Xina that's a good idea about writing a log. I do write a log but not that detailed and I do forget how severe things are at certain times. To answer your question Leaflea, I have been twitching since December 2013 and the other symptoms started around April 2014.
I actually lucked up and have an appointment with Dr Bedlack at Duke tomorrow. He is the man for ALS around here. I am nervous as all get out and praying I have a good visit.
Its the intermittent shortness of breath, the muscle tightness in the midsection and the overall fatigue that really worry me. I should be able to run a mile with out feeling like my chest is locking up. Something is definitely wrong and I am tired of getting no answers.

I doubt I will sleep tonight.

Thanks for the support.
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Re: Still have ALS Concerns

Postby Scboy on July 30th, 2014, 9:52 am

Officially diagnosed with Cramp fasciculation syndrome by the ALS doctor at Duke. Taking Tegretol for my symptoms.

Dr Bedlack said the muscle tension can make it harder to breathe. It was good to hear this cause this was my most concerning symptom--at least up to this point. My respiratory FVC number was 144% which is the highest number he has ever seen so there is nothing wrong with my breathing muscles.
So Who knows what the future holds as these symptoms seem to come and go and in different places for me. Hopefully the medicine will help. Dr. did say this was likely going to be a lifelong thing for me. I like to run so it kinda sucks, but I'll take it. It could be much much worse.
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Re: Still have ALS Concerns

Postby Xina535 on July 30th, 2014, 3:57 pm

Wow! You saw the top guy there! very good news for you! Congrats! Hopefully you can start to calm down and manage the symptoms. :mrgreen:
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Re: Still have ALS Concerns

Postby leaflea on July 30th, 2014, 6:23 pm

Scoby,

Amazing you saw that guy. Can you tell us any other details of your visit. Congrats on the breathing muscles. Start that journal now and write it down that it was your biggest concern and you are the healthiest in that aspect he has ever seen. It screams NO ALS! And don't you forget it :D
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Still have ALS Concerns

Postby Scboy on July 31st, 2014, 8:27 pm

The Duke ALS Clinic is first class. Everybody was pleasant, knowledgeable and understanding of my fear. It takes a special person to be in that field. God bless them. Dr Bedlack does not usually take appointments for people without an ALS diagnosis. I don't know why he made an exception for me. Maybe because I was already seeing a Duke neuromuscular doctor.
He did a basic neuro exam and reviewed my EMG. He did say he used to see many cramp fasciculation patients. He said it can be pretty rough, but it is usually manageable with medicine. He had one patient that had to quit work for a while, but he got better with medication and was able to go back to work.

Just to hear someone of his background answer my questions and tell me highly highly unlikely to be ALS was worth the 4 hr drive. Of course he didn't say 100%. He can't say 100% that he won't get ALS.
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Re: Still have ALS Concerns

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