Barely hangin on today

[amyecpa]

Hi,
Just wanted to express myself today and see if I could get anymore opinions. First off, I had a neuro visit scheduled for Aug, but it did get moved to this Friday after I begged and pleaded. It is with the same ole general neuro that I've been seeing since Oct, so I don't know how much will occur, but this is the first visit since I began having fasics.

My symptoms in a nutshell are "numbness" (no actual loss of feeling) that began in my right arm/hand and is now pretty much in all limbs (some worse than others). I've had every test imaginable and nothing has shown up to explain this "numbness". I'm now questioning if this "numbness" is in fact weakness. I haven't noticed that I can't do things that I could do before, but I have a desk job that wears me out and I usually sit on the couch when I get home. How would I know if things were weaker?

My fasics are random... a twitch here, two or three there (about every five minutes or so). They occur all over my body, but the majority are concentrated in my right calf/thigh area. My calves feel tight, kinda charley-horsey (if that makes sense). The fasics are painless and I can see them if I happen to be looking at that particular area.

I realize that this a repeat of posts that I've made before, but I'm just hoping someone else will chime in with an opinion and yes, I know you guys are not docs. I just keep having thoughts about not seeing my boys graduate kindergarten, have a first girlfriend, etc. I'm just a mess. I am taking Wellbutrin and Klonopin (actually a little more than prescribed just to get from moment to moment).

Sorry to babble and cry to you guys, some of whom have way more to deal with than a heartsick mother, but thanks for listening.

Amye

 

[amyecpa]

Forgot to mention that right arm/hand is still much more affected than the other limbs. No loss of movement just that "numb/dead" feeling.

 

[tatsu15]

Hi

Sorry you are going through this. What did the doctors say? Did they rule out Lyme disease? Did they check your thyroid? Did you have an emg and did it indicate carpal tunnel?

 

[amyecpa]

Western Blot test negative (I think that's the most reliable lyme test), thyroid levels always fine. I had an EMG 7 months ago with no abnormalities, but I think it may have been a surface EMG. I only remember one stick in my right arm, but the report lists both legs and the right arm. Nerve Conduction was fine, no sign of neuropathy. All MRI's fine. Negative for a plethora of autoimmune disorders. Negative for Myasthenia Gravis. I've had extensive metabolic/nutritional deficiency tests done. I just feel like I'm running out of things to test for.

 

[sadiemae]

My PALS never has had numbness. Loss of mobility, such as unable to open a bottle of water, or reach behind head to scratch an itch, but NEVER numbness. HUGS Lori

 

[joelc]

Numbness and twitching are not signs of ALS. What are you wanting us to tell you? Since you keep posting the same question I guess you have not got the response you are looking for?

 

[amyecpa]

Joel, sorry to irritate you, but thanks for the candor. I completely comprehend what you (and others) have said about sensory issues not being a part of ALS, but I've read several previous posts from people who were actually diagnosed and they began with loss of sensation and fasciculations. It's been almost one year to the day since testing began and I'm still no closer to an answer. I recently watched a good friend take care of her husband who had ALS until he died peacefully in his sleep (14 mths after diagnosed). I'm sure this has had an effect on my current state of mind. He was bulbar onset and his symptoms were nothing like mine. I'm just young (relatively), scared, and worried about my family. Again, I didn't mean to irritate you or any others dealing with ALS. - Amye

 

[cajebe]

I am so sorry that you are feeling so bad. I completely understand how you are feeling. It is terrifying to not know WHAT is happening to you. I also understand the concern as a mother. I think the biggest part of my fear regarding all of my health issues is for my children. I feel so much like you do. I too am only trying to get to the bottom of what is happening to my body. I saw my general internist today and he is now sending me to a rheumatologist. I then see my neuro again in late Aug. I have had many of the same tests as you and still no diagnosed. I hope that you feel better soon. Keep us posted on the next appt.

 

[dhelfer]

You may have Lyme even though you have had the western blot test negative. The ONLY truly sensitive, reliable test for Lyme and all associated co-infections is throught Igenex Labs in California. You definitely have symptoms of Lyme, which is a bacteria that produces multi-systemic symptoms not the least of which are an attack of the central and peripheral nervous systems as well as muscles and deep tissues, etc., etc. If you need more info regarding contact with a Lyme-literate doctor who can prescribe this testing, please email me. [email protected]

 

[Kohler]

I am brand new to this forum and came here because of the same confusion that you're experiencing right now. In some ways, it is worse not knowing, and the wide range of symptoms, diagnoses, and prognoses only add to the confusion. What we want is knowledge, and some comfort, and that's what these forums are all about, after all.

 

[amyecpa]

Kohler,
I see you are very worried about your sister and I can understand why. I wish I had some words of wisdom or comfort, but I know very little about the Babinsky sign. I hope some of the knowledgable members will chime in on your posts. I do have to address one thing you said though..... Yes, not knowing is horrible, hellish even, but there are so many people on this site that would give anything to go back to the not knowing stage before it all became a reality. I sometimes feel guilty about my posts but I just feel like I have no one who understands so I vent here. This sometimes aggravates a few and that is certainly NEVER my intention. I pray nothing but good things and health to all on the boards.
Love to all,
Amye

 

[joelc]

It is not agravation. It is concern that there is unwarranted worry happening. Any aggravation you might pick up on is because of all the missinformation there is on the internet that gets people to worry about diseases they should never think about. Any frustration we might show is not at any individual here. I hope you might understand where we are comming from. There have literally been hundreds of people asking these same questions and because of a search on the internet find themselves here.

We have great sympathy for the dilemma you find yourself in and hope it has a happy ending. But most times it should never have brought you to an ALS forum, you should never have to endure the thought you have ALS. That is the upsetting thing about the internet.

Peace to everyone!