ALS "specific" twitching?

[trfogey]

Trfogey why say something like that to scare me and then evade the question and not give me a clear answer? The doctor I'm seeing isn't a Neuro and his knowledge on ALS is probably limited to whatever he learned in med school 30 years ago. Since you seem to have all the answers why can't you just make my life a little easier and tell me what you know? I checked the trials btw and they just give the statuses of current trials, no results or conclusions for anything.

Then you should be consulting with a neurologist before jumping headlong into an antibiotic regimen, shouldn't you? If you're wise, it will be someone besides the one your Lyme doctor recommended, just for the sake of getting an independent opinion. But that's up to you.

You were motivated enough to track down obscure references to the relationship between Lyme disease and ALS-like ailments when it suited you to throw quoted material from them in our faces earlier in this thread. Now, you have motivation to find out which antibiotic that I'm talking about.

Good luck.

PS -- I've never claimed to have all the answers. I just make a habit of figuring out the important questions to ask. Like -- when does Dr. Martz intend to submit his extensive findings from his own practice for peer review in a reputable journal, perhaps some case studies of more than one patient (when he is not the one patient who is the subject of the paper)?

PPS -- Hint for discovering the name of the antibiotic -- Search for "author:Bedlack amyotrophic lateral sclerosis" at G o o g l e Scholar.

 

[terrif1ed]

LOL I wasn't asking anyone for anything! I just posted my story like many others...

If you notice everything I've posted since then has been me DEFENDING myself to you people because for whatever reason my post's seem to generate a lot of hate. As I said before I wasn't trying to be diagnosed online.. I came here to tell my story and see if anyone was in a similar situation so wouldn't be going through this completely alone.... I wasn't looking to start a debate, or get sympathy or whatever else you guys can contrive. Most of you had nothing but rude comments so I responded with my own. The only question I specifically asked was about the dangerous meds another poster mentioned and how they can implicate ALS, That obviously made me want to question which exact antibiotic he was talking about to make such a bold statement. But of course I just get that vague answer and am left in the hopes that whatever drugs I am put on don't worsen ALS. It would be nice to have known but, you know, why genuinely help someone or post something constructive right? I know crazy concept.

 

[twinmommie72]

terrif1ed:

I almost cried reading this, I so want you to feel better! So I'm going to help you: The others are hiding the truth from you, it's a vast ALS conspiracy, you have it! Normally you'd have 2-5 years to live, but now that you've used the flashlight, well, you shouldn't have done that. You see flashlight beams speed up progression exponentially, you may not even last the two weeks until the neuro appointment. Get your affairs in order, leave all your assetts to ALS research.

Oops, sorry that was the ALS speaking!

I needed that laugh!

 

[naynaydevil]

Well, hello my fellow twitcher! I'm quite the twitcher...among other sensory issues. Please get out of here! I'm still here browsing around-- to help people like you--- turn around before you get caught in this nasty spiral of needless worry and stress. Anxiety is probably the culprit. I realized this about myself after countless (and pointless) neuro appts., my gp, and ER trips. Among that, the reassurance of all of the kind people here on this forum. I'm now moving on and attacking my anxiety as a result of all of this worry. Of course, I'm no Dr, and everyone is different, so if your symptoms are that concerning make sure you express these concerns with your neuro. for your reassurance.....and of course if your symptoms worsened. But i bed my house on it, it's anxiety and over sensitivity to your nerves.

Why does your forum interest say "in the process of being diagnosed" ? you haven't even seen a neuro yet ? did i correctly read that your going to the neuro in 2 weeks? Lyme is something that probably everyone on this forum who is a PALS would love to be diagnosed with instead of ALS. so if it is lyme-- treat it....if it is anxiety-- treat it. BUT PLEASE BELIEVE YOUR DR NO MATTER WHAT THE OUTCOME. It's taken so long to be where I am right now... g**gle is so terrifying and really not a place for a hypochondriac or over anxious person.

I am also making a donation to this sight via my debit card, because i know this disease is fatal, and there needs to be a cure, and every little dollar here and there will help.

I twitch ALL DAY, EVERY DAY, EVERY WHERE. I don't have ALS and it's taken me a long, stressful time to realize this. you do not have ALS. your symptoms do not lean towards it at all. please take the time to visit these websites----

aboutbfs.com

and also-- anxietyzone.com --- the anxiety zone is a GREAT sight and has a hypochondriac forum with a TON of people with the same exact symptoms,,,and the same exact fears! (i'm there as naynaydevil2).

I hope this helps.

 

[notme]

You haven't gotten any "hate" here. You've gotten suggestions that you've totally ignored. What else would you like? You don't want to know if you have als---thus, you're going to refuse the only test that can possibly give you an answer.

You're going to a lyme doctor and ignoring all the data that says the lab doing your tests is biased at the least--and that EVERYONE who tests there comes back positive through them.

You're researching ALS--which is fine---research the places that are doing your Lyme testing, too.

Months of antibiotics can be a hazard. The people that have given advice are being blown off--which is your right--but don't wonder why people are responding after that with a little bit of snippiness.

Everyone here comes with "twitches" or "pain" or "numbness" or whatever--I haven't seen that many from ones that have come and asked questions and totally ignored the suggestion of being checked if they are concerned.

Best of luck

 

[terrif1ed]

Then you should be consulting with a neurologist before jumping headlong into an antibiotic regimen, shouldn't you? If you're wise, it will be someone besides the one your Lyme doctor recommended, just for the sake of getting an independent opinion. But that's up to you.

You were motivated enough to track down obscure references to the relationship between Lyme disease and ALS-like ailments when it suited you to throw quoted material from them in our faces earlier in this thread. Now, you have motivation to find out which antibiotic that I'm talking about.

Good luck.

PS -- I've never claimed to have all the answers. I just make a habit of figuring out the important questions to ask. Like -- when does Dr. Martz intend to submit his extensive findings from his own practice for peer review in a reputable journal, perhaps some case studies of more than one patient (when he is not the one patient who is the subject of the paper)?

Minocycline. I already knew that (mentioned it in an earlier post) but I didn't know if you were referring to another drug because you didn't confirm it when I mentioned it. , Tetracyclines seem to speed the progression of ALS, I know, and I have every intention of avoiding them. Just wanted to confirm this was also what you were referring to...Thank you for sharing.

 

[terrif1ed]

Well, hello my fellow twitcher! I'm quite the twitcher...among other sensory issues. Please get out of here! I'm still here browsing around-- to help people like you--- turn around before you get caught in this nasty spiral of needless worry and stress. Anxiety is probably the culprit. I realized this about myself after countless (and pointless) neuro appts., my gp, and ER trips. Among that, the reassurance of all of the kind people here on this forum. I'm now moving on and attacking my anxiety as a result of all of this worry. Of course, I'm no Dr, and everyone is different, so if your symptoms are that concerning make sure you express these concerns with your neuro. for your reassurance.....and of course if your symptoms worsened. But i bed my house on it, it's anxiety and over sensitivity to your nerves.

Why does your forum interest say "in the process of being diagnosed" ? you haven't even seen a neuro yet ? did i correctly read that your going to the neuro in 2 weeks? Lyme is something that probably everyone on this forum who is a PALS would love to be diagnosed with instead of ALS. so if it is lyme-- treat it....if it is anxiety-- treat it. BUT PLEASE BELIEVE YOUR DR NO MATTER WHAT THE OUTCOME. It's taken so long to be where I am right now... g**gle is so terrifying and really not a place for a hypochondriac or over anxious person.

I am also making a donation to this sight via my debit card, because i know this disease is fatal, and there needs to be a cure, and every little dollar here and there will help.

I twitch ALL DAY, EVERY DAY, EVERY WHERE. I don't have ALS and it's taken me a long, stressful time to realize this. you do not have ALS. your symptoms do not lean towards it at all. please take the time to visit these websites----

aboutbfs.com

and also-- anxietyzone.com --- the anxiety zone is a GREAT sight and has a hypochondriac forum with a TON of people with the same exact symptoms,,,and the same exact fears! (i'm there as naynaydevil2).

I hope this helps.

It does help, THANK YOU! I'm trying not to let this get to me heh... I don't think the twitches are related to my anxiety as they are pretty much constant in my calves regardless of what's going on, they're pretty fine, like I feel them better when I'm wearing pants because of the slight sensations against the fabric...with shorts on I would probably never know. I've since been jittering my legs subconsciously to avoid feeling them.. I feel like it would be much better to cope if I wasn't constantly reminded by that feeling. My fingers have also been intermittently flicking themselves especially my thumbs..I'm just trying to stay strong for my husband and family. I haven't mentioned ALS to anyone because I don't want to prematurely scare them, especially if my suspicions turn out to be false...So I've been dealing with this alone and in silence.
I plan on treating the Lyme, reducing all the anxiety I've induced on myself and probably avoiding this board for awhile until I can get a clearer grip on what exactly this is. Thank you for your post though, I had to put "in the process of being diagnosed" because when I went to register it made me choose a situation... That seemed to be the closest fit. I tried to leave it blank but it wouldn't let me!

 

[naynaydevil]

It does help, THANK YOU! I'm trying not to let this get to me heh... I don't think the twitches are related to my anxiety as they are pretty much constant in my calves regardless of what's going on, they're pretty fine, like I feel them better when I'm wearing pants because of the slight sensations against the fabric...with shorts on I would probably never know. I've since been jittering my legs subconsciously to avoid feeling them.. I feel like it would be much better to cope if I wasn't constantly reminded by that feeling. My fingers have also been intermittently flicking themselves especially my thumbs..I'm just trying to stay strong for my husband and family. I haven't mentioned ALS to anyone because I don't want to prematurely scare them, especially if my suspicions turn out to be false...So I've been dealing with this alone and in silence.
I plan on treating the Lyme, reducing all the anxiety I've induced on myself and probably avoiding this board for awhile until I can get a clearer grip on what exactly this is. Thank you for your post though, I had to put "in the process of being diagnosed" because when I went to register it made me choose a situation... That seemed to be the closest fit. I tried to leave it blank but it wouldn't let me!

yes...stay away from this board...get over to the anxietyzone.com...it fits your symptoms much more then this. Also--the twitching in your calves...definitaly anxiety-- or maybe just muscle fatigue or over use. I have it everywhere...sometimes it will just settle into my leg, or arm, or foot...etc.. and then move around all over again. It sux, but it's not ALS.... twithcing is not used as a diagnostic tool when dr's are testing for it.

twitching in als-- is the result of the muscle in the effected area dying. So, the twitching is the muscle trying to save itself and come back to life...and then once the muscle is 100% dead.. even the twitching stops. Then the muscle atrophies and thats it.

Plus the twitching with als ---when and if it does happen-- are small, tiny little fasics. mostly never felt, like maybe tiny worms moving on the effected muscle/area. Our twitches--actually make a whole limb or finger jump-- our twitches are seen like popcorn popping under our skin---- our twitches move around all over our body--- that all points AWAY from ALS.

and- there is a difference between muscle fatigue and muscle weakness------> and there is a difference between perceived weakness and clinical weakness. Believe your Drs., join me on the other forum, and treat your anxiety problem before it gets out of control.

Trust me, I'm not 100% recovered from my fears, but I'm in a much better spot now then I was 5 months ago, or hell , even 2 weeks ago.