Twitching and now numbness-getting more scared

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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/10/2008 10:54 PM (GMT -6)   
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
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 11/11/2008 7:30 AM (GMT -6)   
Hi King, We are new to this and still learning. My husband has been ill since last august and has been down the same route. I can hear in your questions how fearful you are. My husband had spine stenosis slightly elevated ANA with small brain lesion. Igg 41++ 31 Ind and 39 Ind. He wasn't tested for these until almost a year after seeing symptoms of muscle twitching, stiff neck and stiff joints. He was dx with possible ALS. His new dx is lyme induced MS On orals for 90 days with no improvement but lots of herxing. On IV Rocephin for 4 weeks now and has recently (2 Months) bedridden. In the last few days we are starting to see improvement. Sometimes the more you read, the more confused you get. We've been there. It is good to research but too much can be a bad thing. Hang in there. I recently read about trials for ALS and antibiotic treatment curing it. It seems they believe a very large percent of ALS is Lyme. Hang in there and keep pushing until you get answers. God Bless, Bev

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/11/2008 8:55 AM (GMT -6)   
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

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/11/2008 11:33 AM (GMT -6)   
Thanks for your feedback. I am only 33 and feel like a mess. My dr said he would highly doubt it to be ALS since I have pains and numbness, which normally sensory items are not associtated with it. Still the joint cracking and twitching is making me more and more scared--its hard NOT to think these things when you have no dx!
 
I hope my co infection test show something.
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/11/2008 1:24 PM (GMT -6)   
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

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/11/2008 1:32 PM (GMT -6)   
Thanks Dowa the joint cracking and twitching is what freak me out about ALS. I was told the numbness and pain would have nothing to do with that so to "relax".
 
What other symptoms do you have?
 
I really hope this llmd dx me when I see her next week. I dont know what to do otherwise...I want a dx of something so I stop driving myself crazy!
 
I was pos on 34 as well....but read one needs to be pos on two bands :(
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/11/2008 1:56 PM (GMT -6)   
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...

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/11/2008 2:02 PM (GMT -6)   
Thanks Dowa. I dont drop things (yet). My main issues rae the shooting body pains, nerve pains, twitching all over, vibration feelings, EXTREME joint cracking, numbness on and off in my finger.
 
The joint cracking is the one thing that makes me believe its not MS related, the cracking and popping out of socket is so extreme. The pain is the one thing that makes me feel its not ALS.
 
Please keep me in your thoughts next week, I know I sound so crazy to say I want a positive on the co infections but I want it for answers!!!!
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/11/2008 3:17 PM (GMT -6)   
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

unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/11/2008 3:40 PM (GMT -6)   
Shooting bone pain and traveling numbness were among my first symptoms of Lyme. The numbness can be in either just a toe, part of the hand or face, or a whole arm or leg. It's worse when I'm herxing and that's how I know that whatever I'm taking is working. None of the numbness has been permanent so far, as the nerves always seem to repair themselves. Have you read up on peripheral neropathy?http://www.umm.edu/ency/article/000593.htm

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/11/2008 4:02 PM (GMT -6)   
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....
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/11/2008 8:03 PM (GMT -6)   
Yeah, my pain is deep and sharp and will last a few seconds and then show up again later in another random place. I used to think I must have bone cancer! Of course now I know that that's not how bone cancer works :) Sometimes I'll get a deep pain that last for hours or days. It's usually in the hands or something that I've been using alot of but sometimes it might be a collar bone or ear even.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/11/2008 9:28 PM (GMT -6)   
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
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/12/2008 12:01 AM (GMT -6)   
ALL my joints crack and I have a few muscle spasms or twitches a day. I also have on average 8 myoclonic jerks per minute. I've had problems with my spine 3 times. They did MRI's but I can't remember exactly what they said. I'm finding that spinal problems are common with Lyme. Then again, what isn't? Have you found anything out about your eye pain? My right eye is killer and sometimes the lower lid droops.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/12/2008 12:18 AM (GMT -6)   

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...


----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/12/2008 12:39 AM (GMT -6)   
It took a year and over a dozen specialists til one finally did a WB for me and it showed 5 positive bands. I lived in an endemic area where everyone and their brother are getting Lyme and I started getting symptoms a week after the bite. Some of the docs thought I had early MS or some other demyelinating disease. One thought I should be assessed by a mental health professional, one thought I had somatization. Lymies are often labled as hypocondriacs by friend's and family. I was completely healthy before the bite and now I can't even keep track of every odd thing that's going on with my body!
Do you remember when your symptoms started? What state were you in? June-August are the most common months for Lyme transmission. Also you can have Lyme but have it go dormant only to reappear later at a time when your body is physically or emotionally stressed.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/12/2008 1:01 AM (GMT -6)   
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!
 
 
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/12/2008 1:19 AM (GMT -6)   
Well, just the fact that your WB showed positive bands means that you've been exsposed to Lyme at some point. With all your symptoms the odds are that the infection is alive and active.

I was tested through Labcorp and none of my specialists will treat me since I was short a few bands for a CDC positive. I saw a top infectious disease doc in Seattle and he told me that even if the test were positive he still wouldn't treat me with I.V. unless I had a positive spinal tap for Lyme. I already had one that was negative. He said that further oral antibiotics wouldn't do any good and that what I'm experiencing is from an autoimmune reaction from the Lyme, that my body is just all thrown off now. I of course don't share his views so now I pay out of pocket to see a LLMD.

unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/12/2008 1:32 AM (GMT -6)   
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

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/12/2008 12:54 PM (GMT -6)   
Interesting, I was tested through LC first and it was just "neg", I never got the break down in the bands. Was that present on your lab papers or did you have to request that?
 
I went back to my neuro today who reassured me "you dont have ALS, it WOULD have shown on the EMG", and "your reflexes would be off". Its hard not to panick when all of these random things are going on in my body.

I think out of all my symptoms the worst is the twitching and cracking. I can even handle the pains because they are so random. Some days I dont even get them, I have not had them for a week while the week before my pointer and middle finger felt like they were being attacked on and off.
 
I do not have any swelling that I see, is that odd?
 
How long have you been getting treatment for? Are most of your symptoms under control? How long did it take for the meds to kick in?
 
Thanks again.....
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/12/2008 4:13 PM (GMT -6)   
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.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/12/2008 4:54 PM (GMT -6)   
How long have you been antibotics?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 

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