Update to a closed thread from January 2018

[Vangie]

I just wanted to hop on and thank everyone who left messages for me regarding my fear of having ALS. I have stayed off the forum as promised but just giving update as some had asked that I do. My neurologist did a upper extremity repeat EMG and NCS and still states findings of bilateral carpal tunnel and neuropathy, stable from 6 months ago. Did not do additional testing on my legs but did do another neuro exam for strength and balance. I continue to feel “jelly legged” if that is a term😂 And in the last three months have lost approximately 15 pounds. Unintentionally but he listened to my concerns on how this has increased my anxiety as my arms look really skinny and muscles seems skinny, soft and a bit odd to me. My legs look pretty skinny from the knee down and my right foot is, at times, hesitant to go with me or bend while walking. Can be very sore. My left arms pops or sticks a bit but I have to continue to tell myself it’s been 18 months. My tongue is still swollen and I produce a lot more saliva , my teeth feel soft and my bite has moved. I do clench a lot in my sleep but my tongue continues to be able to touch teeth and move about. I do get food stuck on the back of my tongue and I have an EGD scheduled for next week, still having esophageal spasms after three years post shingles? My hands are the worst. Both hands have become a bit skinny in the thumb area and there is a visible pulse coming into the wrist area. Mostly they are tight though and the peel a lot. I think that is where my fear lies right now but I will continue to stay away as promised. If anyone has heard of this tightness and peeling being something they know about please feel free to let me know! They look and feel awful and I have noticed at times my fingers look webbed, like after being in water? The tightness hurts but not sure if it’s an ALS worry. Thank you.

 

[lgelb]

I would see a rheumatologist to rule out those kinds of diseases, but still don't see ALS in this picture. You might also see a dentist about a night guard to reduce clenching.



Best,
Laurie

 

[KarenNWendyn]

Definitely not ALS. However, I’d be curious to know if you have had any rashes or peeling of the skin on the top of hands or finger tips? Fingers turning blue in the cold? Shortness of breath? Cough? Any recent muscle enzyme testing (eg CPK)?

 

[Vangie]

Thank you for responding Karen!! I do have shortness of breath, really difficult to breathe while laying on my back. I have not noticed any blueish coloring and when they test my O2 levels they are within normal range. I have had esophageal spasms " More than they normally see" so I was thinking the shortness of breath was from that. The spasms are getting worse and having a bit of trouble with spontaneous intense nausea? My hands are so tight and the rash heals, then comes right back and peels some more. I have become quite skinny but my actual weight has not changed but between ten to fifteen pounds, I was wondering if I am looking muscle mass? So upsetting to not understand what is happening to me. So thankful it does look of sound like AL S though

 

[Vangie]

Thank you Laurie! I am working on that night guard and I wondered about seeing a speco, rheumatoid and or dermatologist? Skin looks leathery at times.

 

[KarenNWendyn]

See a rheumatologist. Get a chest X-ray and some pulmonary function tests. And make sure you have blood tested for ANA and CPK. I can’t diagnose you here, but I’ll bet you’ll get some answers soon.

Best of luck.

 

[Vangie]

Thank you so much. I will absolutely do that!. I went into Mychart and looked up my labs. There are several C k levels. Not sure if this is what you asked but the results are 11-2015 level was 79. Then I had shingles and immediately had breathing issues 1-5-2016 my level had jumped to 267. On 3-10-17 it was 109 and final Ck was on 2-2018 and it was141. Definitely jumps around? Will make that appointment asap!. Thanks again!

 

[Vangie]

Laurie, should it be a worry that I can see the nerves, bilateral, pulsating towards both wrist? I do not feel them like I occasionally feel the others but they are constant and visible to the eye?

 

[lgelb]

You can't see individual nerves pulsating, though you can see twitches in muscles, of course. If you mean, you have visible pulses showing the beating of your heart, that does not mean anything in particular. Let us know how the appointment goes.

 

[KarenNWendyn]

Maybe you’re seeing your arteries pulsate? People become more aware of that sort of thing if they have pain or abnormal sensations in a given region. Generally it is not a problem.

 

[Vangie]

Thanks so much��

 

[Vangie]

Thank you very much!! I will let you know how the appointment goes!

 

[Vangie]

Yesterday, I felt awkward with my hands feeling stuck in place, fingers, having to shake them loose. Rheumatoid appointment in a couple weeks but feel like I wake up to new amounts of weakness, worry of atrophy, so I am just asking for some guidance.. is this dents and things all in my head? I really hope so!!

 

[KarenNWendyn]

Your hand looks normal to me from that picture.

 

[Vangie]

Karen , thank you for being so kind. I am also dealing with leukemia, 13th year, and I am so scared of what my body is going through right now. I have no control and to me the issues of dropping things, weakness in my legs, numbness in my left leg and toes, having trouble pulling my shirt off over my head.. I am overall absolutely freaking out. Will you please look at these and just st tell me if they show atrophy or not? I realize you are not diagnosing , Ijust am stuck on trying to get an earlier neuro appointment versus completely embarrassing myself and making him agitated... if not I totally understand. Thank you!