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edwards5257

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I never post and I hope I'm in the right spot for a couple of questions. I am not intending to bother or annoy and know its difficult for many of you to respond.

I tentatively have been diagnosed with small fiber neuropathy. I may get a muscle biopsy in Feb. This would be through my St Louis neuromuscular specialist.

I am going for a 3rd opinion on Oct 9 in Nashville. He's supposed to be the best at St Thomas Hospital. My gp set this up. I want to try and let this be my last referral. I realize I am probably doctor shopping.

I am going to try to go in with an open mind and try to not mention internet stuff I have read.
I'm going to try and let the neuro do his job he was trained to do. That is my hope and plan. In other words not point out I think I have some "form" of motor neuron disease, etc. which I have been assured not in the past.

How does a neuro notice or spot what I would call "core weakness"? What I consider my abdomen, lower stomach, chest and back? I'm weak everywhere (perceived I am told) but it seems not to be to me. I hv read the stickies so I know what is said there.

Final question - when it comes to my neck, mouth, tongue, throat areas I am hoping that a neuro can detect the weakness all in those areas of course but not sure how exactly. They ve done some tests with my tongue , whistling, etc. & have assured me of no twitching or wasting in the past. Just kind of asking. Sometimes I wonder if I should see an ENT. But it's never been brought up by me or any neuro. No EMG for those areas have ever been done.

Yes I've had clean EMGs, NCVs, EEG, MRI and MRA and tons of bloodwork both by my hometown neuro and neuromuscular specialist in St Louis. The continued all over weakness and twitching just - well I stay so scared. And yes I see someone for depression and take meds.

I think I'm to the point I've got to try to accept and know it can take time, years in fact. I
guess I need to really try to accept the new "normal" for me but it sure is hard. Thanks for your time and any or all responses. I am widowed but my two grown sons and one grandchild keep me going.
 

vickim

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Larry

My neuro tested my weakness by me pushing against a measuring device. I don't know the techie term sorry. he tested my neck by having me push against his hand with my head from both front and back. He had me squat down on my haunches and told me to get up without touching the floor. He also had me sit all the way back in a chair and then told me to get up without touching anything. He had me fill my cheeks with air then he squeezed my cheeks and told me not to let the air out.

I would ask the dr about the ENT. Larry, we are good friends and I know how frightened you are because I can't recall you ever posting a question to the forum. I am praying and hoping you finally get some answers. I hope others will chime in here too.
 

edwards5257

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Thanks so much Vicki! I appreciate your concern, care and reply to me here today! Much so!
 

curtrill

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Larry,

You are the kindest of men. You have a heart that loves God. I know you through mutual support we have given each other through pm's for well more than a year. Each of us have learned so much from the most resilient people on this planet, PALS & CALS.

We have both been reluctant to post due to having been told "no als" and having had clean EMG's. It is a respect for those that never were blessed to hear those words.

ALS is so variable that with continued symptoms and everything else eliminated we feel things could change and this is very concerning.

Being a fellow undiagnosed member, I wanted to thank you for having the courage to reach out to this forum once again. There have been many days I have wanted to, but have not for similar reasons.

We realize this is the only forum where people are, that unfortunately know this disease best.

I personally believe that every "ALS specialists" should be required to read every diagnosed thread on this site for continuing education. Many of them, IMO, need a more broad understanding of how this disease can present and progress.

I hope you find treatable answers, my friend. We are here to help and be helped.

Your Friend,
Curtrill
 

edwards5257

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Curt rill

I so appreciate the friendship through p m s off and on also. I appreciate you also and your continued and ongoing unresolved neurological problems.

I was reluctant to post but decided to do so. It may not garner much response but that is o.k.

You too are a good man and even though we are basically in limbo on this forum we are all in this together,
all of us! Blessings to you also!

Your friend,
 

Nikki J

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Hi Larry
You are so wise to approach this consult with an open mind. You will of course listen well to this doctor. I am sure you are making your lists of questions and concerns. There is nothing wrong in reporting the symptoms that concern you and if you do not feel the exam and plan addresses those symptoms in asking afterwards in the respectful way I know you would what the doctor thought and if the answer is unsatisfying asking if there is another way to evaluate it. Do not be afraid to list your symptoms. That is what doctors want. Describing how the weakness manifests itself is infinitely better than saying I am weak. If your core weakness shows it self by no longer being able to sit up from lying say that ( though I expect it is somewhat more severe than that?)

Wishing you a productive and reassuring consult

Best
Nikki
 

edwards5257

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Thank you so much for your response to me also today Nikki

I appreciate your concern and response also. I will give the symptoms as much input as I can to the dr.

I "can" still sit u p (for now) from lying down which is a blessing. Thank you again for your concern and response!

Regards,
 

edwards5257

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I replied Nikki but it went to mode ration for some reason.
 

ottawa girl

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Larry,

Keep at it - Keep fighting. Your attitude is a wonderful example for your grand kids.

There's an answer out there for you. I'm sure.
 

edwards5257

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Thanks much Elaine!
 
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