Twitching and now numbness-getting more scared

Hi guys. about 2 months after onset of my pains, joint cracking and vibration I started to get NON STOP twitching ALL over my body. I have had it every day for 3 months non stop. I am so scared I have ALS due to the cracking (which is extreme, now also my joints are popping out of socket) and twitching even though I had a good EMG. I guess I worry I had it done too soon.

Now my right pointer finger has been numb on and off for 3 days, this is the 2nd time this has happend

Has anyone else had these symptoms and fears?

My MRI of head and spine showed no lesions. My lyme IGM was only pos for 34 and ind on 31 and 41 so no dx. Still waiting on co infections

King1234,

Is your neurologist willing to do a repeat EMG? I understand your feelings - I would sit there and watch my entire legs twitching and rippling. Then it started to move up to my abdomen. I also had severe pain and numbing so I understand that you are very scared of ALS. My neurologist did two different EMG's and I think he did it to reassure me that I did not have ALS. He called it benign fasiculations but it didn't feel benign to me and since I had lyme in the past I went back to my LLMD.

It is good news that your other tests are all negative and that you are ruling out other problems. You tests so far show that you do have possible lyme and if you have any co-infections they can cause neurological symptoms including twitching and even auto-immune symptoms even though your work-up was negative.

I did go on IVs and do take a very small dose of Clonozapam - .25mg at night. It not only helps with muscle spasm but anxiety and sleep. Magnesium at night can also help relax the muscles and facilitate sleep. My treatment has been long and aggressive but my twitching has almost disappeared - only occasional twitching in my calves. So try to stay calm - I suspect that you do not have ALS. By any chance do you exercise a lot or walk a lot? They do not know why but exercise for some can cause muscle twitching and if you have lyme it is a double whammy.

Masonsmom advice is good. Reading too much information can increase your anxiety and fear and make you think about it all the time. It becomes all consuming and understandable so. If you can get further evaluation by a good LLMD it will take you closer to figuring what direction to go in.

Beth

Hi KIng: I was about to tell you the same thing then read your reply. I was told that ALS does not cause pain. I have two  fingers on my left hand that are completely numb now and the numbness is starting to go toward my hand on the side. Dr. C in Missouri will tell you that a IND of 41 is indicative of Lyme. So, he would call you positive. Hope this helps.  D

Dr C will say you do NOT have to be positive on two bands. There is something "specific" about 41 but I do not know what it is. I have ALL the classic MS symptoms. Balance problems, speech problems, writing, reading. MY gait is such that I walk like I am intoxicated most of the time. I drop things constantly, which is one of the FIRST signs of MS. Do you often drop things? However, all MRIs are "normal" so they are calling it Neuological Lyme. Honestly, they are so similar it is difficult to decide. I suppose if anitibiotics work, then you will know it is not MS.Good luck-its hard I know...

I understand, having a diagnosis is important, it makes it all valid and maybe others will take it more seriously if it has a name.  Take care. D

Thanks so much for your feedback. Its so odd, my finger was numb for 2 days and fine today.

What did your bone/joint pains feel like? Did they last anywhere from a second to hours?

Mine feel like a toothache pain in the place it hits, I have never felt a pain like this in my life its so odd. Its like someone put my finger (or whatever body part-usually random toe, random, finger, whole foot, whole hand, ankle) in the freezer and then knocked it up against something. Not an ache,but a pain....

Oh my gosh you sound like me! I really thought I had bone cancer so got a full body bone scan when this all started!

Do you have twitching all over and cracking joints

Did your joints start cracking after you got lyme?I am so sick of drs saying joint cracking is normal...sure it is in some people but it never was with me until 2 wks after the pains started. I prob crack about 100 times a day at least. Sometimes the same joint cracks 5 times within a minute. Everytime I roll over at night my shoulders crack. Now its getting so bad that even my joints pop out of place.....I went to another neuro on Fri and he was moving my leg up and down and felt and heard my hip popping out each time, he didnt know what to say.

I twitch non stop everywhere, this started 2 months after the pains so its been going on 3 months. I am so scared I have ALS due to the twitches and I keep thinking I am cracking because of muscle waste. I had an EMG that was clear however I fear I had it done too soon. I have been told though that sensory items like pain, buring, etc is not associated with ALS so I hold onto that. Its hard NOT to think unreasonable thoughts when you have such odd things going on and no dx

I went to a neuro opthamolgist about my eye and he did a very long exam, he said my eyes were perfect. He saw no nerve damage, no pressure etc.. so I dont know what to think about that.

I found out in an MRI that I have c spine stenosis-its mild to moderate and I was told not the cause of my widespread issues--of course would not explain my cracking. How I got it I have no clue.

How long did it take you to get a dx? Was it through a normal lab or specialized

Thanks so much for giving me so much feedback...

So was your WB through a regular lab? I tested through a regular lab then IG in Palo Alto, thats where I tested pos on 34 and IND on 31 and 41 for the IGM.

The odd thing is I live in San Francisco. Years ago I used to camp a lot but other than running these stairs that have trees around them (and dogs running up them) I am pretty much on the street. The only time I really remember being bit by a tick is when I live in Connecticut but that about 15 yrs ago

At the end of April I got a bad cold (or visa versa cant remember) and 3 days later I had 5 red bumps on my stomach. They looked like flea bites so not a bulls eye rash, I dont have pets or fleas (LOL) so I had was worried as to what it could be. I went to the dr, he gave me 5 days of antibotics not being sure what it was. So it cleared up a wk later. A few days after it had cleared I went to Arizona and this is when I first felt an odd sensation....I was walking in my sisters house and felt a sting on my toe...she lives in what we call "national geographic" (always deer, wild pigs, fox, scorpions, all over the place) so I thought I had been stung by a scorpion, I looked down and was fine. Did not think much of it. I returned home and  I had cosmetic surgery (about 2wks after the bumps). Finally at the end of May (so this is 1 month exactly after the bumps) my dad was dx with terminal  pancreatic cancer-it was caught by mistake. The news was devastating to me as he was the only parent I knew. I flew to AZ where my dad lived every week to help him die. about 1.5 wks after his dx I started to get the pains, and it was history from there.

So I dont know..do the bumps mean anything? Maybe? Did my Dads illness set something off in me? Maybe? There were so many things in this exact time-bumps, surgery, Dad that I dont know if any of it is connected which confuses me more!

 

Here's a link that you may find some helpful information at. It's best to do your own research and learn as much as you can. Even LLMD's are fallible to some degree.

http://www.wildcondor.com/lymelinks.html

My rheumatologist was that one that went ahead and ordered the WB for me. He gave me the lab report and it showed the bands that were positive and negative.

I don't have redness or swelling in my joints either. I wish I did because then people could see that I'm not making up the pain. It's real!

I'm still searching for proper treatment. None of my symptoms are better yet. They do come and go though except for the fatigue which is constant. I've been on low dose antibiotics and then a bunch of natural antibiotics and things I'm throwing at it. My LLMD gave me a list and said to keep piling things on until I feel really really bad. Then I should know it's working :)

I know it's easy to panic. I think we've probably all been there. You just have to find your own way to come to terms with it and adapt to a new way of life I guess...there is always hope...and you live in Cali where the LLMD's can use whatever form of treatment they chose. The docs here where I live run a high risk of being investigated for risky treatment(long term/high dose antibiotics or I.V.)

I would recommend keeping a health journal if you don't already.