Still Frustrated and Worried...

[MangiPNG]

Hello everyone,

I posted a thread on this forum a few months ago because I experienced a strange neurological condition that several drs have yet to diagnosed. Thus far, I've had drs mention Lyme disease, Guillen Barre syndrome, ciguatera poisoning, and, yes, ALS as a possible diagnosed. My condition has been ongoing for more than six months, and you can read how it started by viewing my original post [https://www.alsforums.com/forum/showthread.php?t=7701&highlight=MangiPNG].

I'm still experiencing diffuse muscle twitching (although they've decreased in frequency and intensity) and recently I've started to feel as though my left hand is weakening, but I have no way of objectively knowing. Additionally, I've notice that whenever I make a fist with my left hand, the pinky side of my palm doesn't immediately return to its normal shape once i open my hand. It remains indented for a few seconds, twitches a few times, and then returns to its normal shape. It's hard to explain what I'm experiencing but it's visibly noticeable. In addition to the twitching, nonspecific burning-like pain comes and goes in various parts of my body. Do people with ALS experience this type of thing? How do you know if you're losing strength?

Since my last post I've been receiving treatment for Lyme Disease. The results from my Western Blot test was a mixed bag (as they almost always are) but my immune marker CD57 was suppressed (42 cells per micro-liter), which some claim is indicative of Lyme and/or HIV, and I know I don't have the latter. Over the last three months my body has undergone intense antibiotic treatment along with a cocktail of other meds that have delivered mixed (if any) results. Are those of you with ALS familiar with the CD57 immune marker? If so, what can you tell me about it?

I'm still frustrated with the medical treatment I've received (despite seeing the "best neurologist" in my city), worried, and don't know where to go or who to trust anymore. I feel like I'm on my own to figure out what I'm dealing with and it's frustrating! I'm scheduled to see my neurologist this Friday, but I am curious to hear what your take is on the recent development with my left hand.

Thanks in advance for your help.

Thanks,
MangiPNG

 

[lydia]

Mangi,

With respect to your left hand: I know exactly what you are talking about, as my hand has been doing that for a good two years. Sometimes I don't have to close it and open it for it to happen, it will just happen on its own. It doesn't "hurt" but there is enough of a sensation to cause me to pause and look down at it when it happens. I refer to it as a painless cramp. It is a source of amusement to my children because I can't help but point it out when it happens (it looks so odd). Anyway, I do NOT have ALS (cleared through EMG), so rest easy there can be alternative explanations for that particularly interesting "cramp" (I just have no idea what that alternative explanation might be!).

Lydia

 

[Zaphoon]

Mangi,

Hang in there! Patience! The road is often a longer than 6 months for any kind of neurological diagnosis. Hang in there and let you doctors figure this out with the wide variety of tests they have at their disposal.

Count yourself as one of the lucky ones for now. At least you are getting some kind of treatment. Many on this forum remain in Limbo Land and receive no treatment at all.

Lymes is preferred over ALS! (in my opinion...)

I'm hoping it is discovered that you do have something treatable and curable!

Zaphoon

 

[rose]

MangiPNG ,

To answer your specific question, I did not consciously notice weakness in the bulbar region, it was so gradual that I was not aware, although once it was pointed out to me by my specialists, I then saw what they were talking about.

Limb weakness, yes I was aware, but because reflexes are involved, its more than just weakness; the way my hands move (diminished small motor coordination), was as much a factor as weakness. Although many descirbe first not being able to turn a key as a wake up call that they were growing weak, for me, it was a pushing/pinching action with my fingers where I knew something was off, such as pushing down on the flush lever of the toilet, or using a cotton ball removing nail polish.

You already know that intermittent nonspecific burning pain is not indicative of ALS, but would point towards a neurapathy of some sort. So, that would fit with Lymes, or the neurotoxin from the fish you'd talked about in the thread you linked to....

Try to keep positive and hang in there, the road can be long in finding what is wrong if you're not a textbook example of a condition or disease. Also, I've heard treating Lyme and other tick borne illnesses is a lengthy process.

I am not familiar with the CD57 immune marker...

 

[MangiPNG]

Thanks for your feedback

Thanks you all for your comments and sharing your experience with me. It seems PALS are more knowledgeable about neurological conditions than most drs. I know burning isn't typically (if ever) associated with ALS but my drs haven't ruled it out. Why? I don't know.

The pain and twitching seems to come and go in wave-like patterns - very strange. My perceived weakness in my left arm is probably incorrect because it feels fine today. It's unusually comforting to know that I'm not the one person with the bizarre hand "condition". I'm wondering if my neuro is going to request another EMG/NCS - I hate those tests!

thanks again for your kind feedback, encouragement and support. It's much appreciated.

Best,
MangiPNG

 

[Zaphoon]

I like the EMG and NCV routine! Yeah, Baby! Juice me again only next time, how about cranking up the voltage?

I really like having the needle moved around in my muscles when the EMG is being done! It makes me feel so alive! Oh yeah!

I can hardly wait for the next round to begin! I hope next time, they use a bigger needle; you can hardly feel the little ones.

Zaphoon

 

[ktmj]

I like them more than the last 60 seconds of my annual physical Zaph...

 

[Zaphoon]

You wouldn't be referring to "the finger wave" by chance, would you? If so, I am in total agreement with you. I've always wondered why the doc saves that bit for last.

Zaphoon

 

[lydia]

What is a physical zaph? Am I missing the joke? Give me a clue-

Lydia

 

[rose]

HA! Lydia, don't tempt him

 

[Zaphoon]

Lydia,

(sorry Rose...)

We have been talking about a physical exam with a medical doctor. Often, the last item to be examined is the prostate. Hence, finger wave. Please don't ask me to get any more specific.

Zaphoon

 

[brendapals]

hey Lydia-

You know-the dr says "cough":lol::lol:

 

[lydia]

ok so I am laughing so hard I am crying...but not over the prostate thing (but thanks for the imagery) what is even worse is that I was specifically referring to his use of the word "zaph"....thinking what in the world is a zaph? have I ever heard of it before? a physical zaph, what is that? I can't stop laughing. God knows why I didn't get that he was addressing Kim (somewhat affectionately, I think!). From now on the term 'zaph' will forever be equated with...well, you know!

I think I will be laughing until morning :lol:

 

[Zaphoon]

Lydia,

You got me turning red in the face now.

 

[GlenBrittle]

So , Zaph

are you the Gumbee

or

the poke-eeee