Pls Help- Tremors, fasciculations, muscle ache/loss but not ALS
 

Hey Guys,

I was hoping someone might be able to help me figure out what's going on with me. Been seeing docs, but not getting the answers I want and I'm really starting to freak out because symptoms are getting worse.

So here is my background...

Back in September, I started to get my Symptoms:
-muscle loss/weakness/aches
-little fasciculations all over my body
-action tremors

I went to Columbia University Neurology and they did the following tests:

-extensive bloodwork(Lyme, thyroid, autoimmune diseases, as well as basic blood tests, etc)
-EMG
-MRI of Brain
-MRI of Cervical Vertebrae

I passed all of the tests and was diagnosed with benign fasciculations and told everything was most likely due to stress because I have a background of anxiety/ depression.

Symptoms pretty much stayed the same for a few months until a few weeks ago when I noticed my muscles getting even weaker(especially legs), added muscle loss, and noticed my hands falling asleep when I am laying down and pins and needles in my left foot.

I then went back and they did a skin test and found that I have significantly low #s of small nerves in my upper body(small nerve neuropathy) in my upper and on the lower end of normal #'s in my lower body.

-I just retook the EMG and passed so it's not ALS and they did all the bloodwork again which I am waiting on. She said there is a chance this is idiopathic.

-Also, just so you know I have been doing accupuncture 2-3 times a week and taking Synthroid(hypothyroidism), and Lamictal/1 MG of Klonopin(both for anxiety/sleep problems)
- I also, take Ubiquinol, Glutathione, Magnesium, Multivitamin, Omegas, Green Vibrance(green powder), Wheat grass powder, vitaman D3, K2, and zinc.

Hopefully someone can help shed some light on what might be going on. Plllleassseeee Help!

Hi, Colin. I'd get a copper test. Since you take zinc regularly this may reduce your copper levels. (they are a duo and work together, and when one gets high, the other gets low).

I'd check your magnesium to see if it is NOT oxide form. This is not absorbed and stays in the bowel to be excreted. You will need a chelated form like glycinate/citrate/carbonate, etc, or SlowMag, instead for better absorption.

People who use Klonopin (or any benzo like it ) every day, can develop mini-withdrawals, in between doses. Benzos are highly problematic long term, and difficult to withdraw from. You would need to discuss with your doctor using another sleep medication like Ambien. Your taper will need to be slow. You can Google "benzodiazepine withdrawal taper" to see other suggestions on the net.

It takes a long time to get off Benzos, so it will not be pleasant, but your twitching may be due to the decreasing Benzo levels in your blood.

Loss of sensory nerve fibers may be inherited too. Do you have any blood relatives with this problem?
Toxins, and some drugs also damage nerves. So look back to your antibiotic use in the past, exposure to solvents, or pesticides, heavy metals, vaccines, etc to see if any culprits can be found there.

This is our Peripheral Neuropathy forum with a subforum with lots of information to learn about to help you further:
http://neurotalk.psychcentral.com/forum20.html

Welcome Colin721. :Tip-Hat:

Thanks for getting back to me:)
 

[QUOTE=mrsD;1124779]Hi, Colin. I'd get a copper test. Since you take zinc regularly this may reduce your copper levels. (they are a duo and work together, and when one gets high, the other gets low).

I'd check your magnesium to see if it is NOT oxide form. This is not absorbed and stays in the bowel to be excreted. You will need a chelated form like glycinate/citrate/carbonate, etc, or SlowMag, instead for better absorption.

People who use Klonopin (or any benzo like it ) every day, can develop mini-withdrawals, in between doses. Benzos are highly problematic long term, and difficult to withdraw from. You would need to discuss with your doctor using another sleep medication like Ambien. Your taper will need to be slow. You can Google "benzodiazepine withdrawal taper" to see other suggestions on the net.

It takes a long time to get off Benzos, so it will not be pleasant, but your twitching may be due to the decreasing Benzo levels in your blood.

Loss of sensory nerve fibers may be inherited too. Do you have any blood relatives with this problem?
Toxins, and some drugs also damage nerves. So look back to your antibiotic use in the past, exposure to solvents, or pesticides, heavy metals, vaccines, etc to see if any culprits can be found there.

This is our Peripheral Neuropathy forum with a subforum with lots of information to learn about to help you further:





Hey there,

thank you Sooo much for getting back to me. That's really kind and I appreciate it😊I apologize for the delayed response...my mind has been all over the place over here, lol. In response to your questions/advice:

I just recently started taking the zinc so we can weed that and the copper levels out I think... I actually started taking zinc because I drank one of those solutions that depending on the taste tells you if you're deficient, and I was.

I started taking the klonipin after the symptoms started to help me sleep so that weeds that one out.

The magnesium is in glycinate form because I heard that's the good one...another one weeded out

As far as the small fiber neuropathy,as far as I know I have no blood relatives with the issue, definitely not in my immediate family. Also I have no recollection of being exposed to solvents or heavy metals... I've been on antibiotics like everyone else for the occasional cold. Does that count?

Also, just to give you an update, I emailed(not saw because he was too expensive)with an integrative doc and he said that he has treated lyme patients that have the same symptoms. I got bitten by a tick( a big spider looking one) almost 2 years ago but got it off within a few hours and then took antibiotics within the first 24 hours. No rash or bullseye either. Since then, the only wooded place I have been in is Central Park, nyc and I don't think there are ticks there. He told me I should go through Igenix for Lyme testing because they test for co-infections as well which regulars docs usually don't, and their labs are supposedly most accurate. So I ordered a kit from Igenx Lyme lab, but have no clue what to test for on there. There are a ton of options. I'd prefer not to go to a lyme specialist yet because it's too expensive, so I was hoping to find out elsewhere which tests I should get. Do you or anyone happen to know?

Looking forward to hearing back from you:):):):)
Colin