Another update . . .

[rekor]

Been on here for over a year

still no answers

some things are worse

primary symptons:

muscle atrophy (right trap)

tmj

shooting pains in the jaw, neck, and shoulder

a lot of shoulder pain (both sides)

random areas of pain (goes away after a bit)

random twitching

low testosterone (I take shots for this every two weeks)

I'm starting to suspect ALS and I'm also considering seeing a Lyme doctor

any advice out there?

[timaca]

Your symptoms are not hugely suggestive of lyme disease. However, you can do some further reading and see if you match the disease. Good luck in finding answers to your problems. Timaca

A good symptom list on lyme is www.canlyme.com/patsymptoms.html.

A good article on lyme is www.canlyme.com/donta.html. Another article on lyme is at www.lyme.org/conferences/98_abstract.html (scroll down and read “Lyme Borreliosis and Related Disorders”—it’s about halfway down the page). Also at www.ilads.org, look on the left side. Click on “Treatment Guidelines.” Click on the article by Dr. Burrascano. Also at www.ilads.org, on the right hand side, click on “National Guideline Clearinghouse Treatment Guidelines.”

An article about chronic fatigue syndrome, fibromyalgia and lyme is www.canlyme.com/fibrocfslyme.html.

Some good labs for lyme testing are Igenex lab www.igenex.com
Medical Diagnostics Lab www.mdlab.com
and SUNY at Stony Brook www.path.sunysb.edu/labs/ticklab/TICKLAB.htm
It is suggested that one orders an IgG and IgM Western Blot test, at the very least. Ask the lab to report ALL bands. Ordering tests from more than one lab is also a good idea.

Some good articles on lyme testing are www.canlyme.com/wb.html and www.igenex.com/labtest.htm and www.igenex.com/lymeopt2.htm. Please note that there is NO definitive test for lyme disease. Lyme disease is a CLINICAL diagnosis….lab data is supportive ONLY. See the recent reseach from John Hopkins University: http://tinyurl.com/pjnkm.

A lyme magazine is Lyme Times and can be found at www.lymetimes.org

Some good lyme web sites are www.canlyme.com
www.columbia-lyme.org
www.lymediseaseassociation.org
www.lymepa.org
www.lymeinfo.net/lymefiles.html
www.ilads.org
www.unh-lyme.org
www.lymenet.org (a lyme disease support group)

To find a doctor that knows about lyme, go to www.lymenet.org. Click on flash discussions. Click on seeking a doctor and post there. Also go to www.lymediseaseassociation.org. Look for “Doctor Referrals” on the left hand side. Post there. They will get back to you in a week or so.

[Tootsie]

I'm not familiar with your symptoms or story. What kinds of tests have you had and what has been your doctors, working diagnosis? What kind of diseases or conditions have been ruled out? When did your symptoms first appear? Have you had any injury? Any family history of neurological problems? Have you had any kind of treatment or therapy? How did you respond? Did symptoms lessen or change in any way? Cheerio.

[rekor]

I got the signature "fibromyalgia" from my neuro

I've had a spinal tap, MRIs of the head and neck

all negative

I go to a rehabilitation doc right now and he says "there's no way it's fibro" as did another neuro I went to

the symptoms came on suddenly one day, starting with the shooting pains then moving to spasms in my shoulder, to an eventual atrophic right trap muscle

prior to that, I was diagnosed with migraines

that's about it

[Boopers]

Hi Rekor,
Welcome! I'm sorry about your health issues and sorry I can't help. I hope you will be able to find the answers you are looking for.
I know it gets disheartening when no one can tell you what is wrong with you.
Hang in there and hopefully, you will find some answers soon!
Linda

[Tootsie]

What were you doing when these symptoms appeared so suddenly? What kind of work do you do? Do you still have muscle spasms in your shoulder? Are the migraines the same, worse or better?

What kind of therapy are you having with the rehab doctor? Cheerio.

[rekor]

What were you doing when these symptoms appeared so suddenly?

I was out of a job, stressed out, and I had recently come back from a trip to a lake.

What kind of work do you do?

mostly computer work

Do you still have muscle spasms in your shoulder?

yes

Are the migraines the same, worse or better?

I barely get them anymore

What kind of therapy are you having with the rehab doctor? Cheerio.

right now I'm doing physical therapy

I did get a botox shot which helped relax the muscle for a while

I'm starting to suspect that I may need another one in the near future

[Tootsie]

Did you drive to the lake? What did you do there? Sit in a row boat? Swim? Fish?

The fact that you do computer work makes me wonder about "repetitive strain syndrome"..fancy doctor term for sitting or functioning in one position for an extended period of time. All sorts of strange and weird symptoms can occur mostly from pressure put on nerves, poor circulation, etc.

I have had some personal experience with this. One day, at work, on a computer, my left arm and hand were going numb. I knew what the problem was, and had been trying to get someone to move the hard drive to the floor from underneath the screen, for 3 weeks. None of the adjustments on chair, desk top, worked for me, due to a severe throracic scoliosis (curvature of the spine.) I was looking UP at the screen. When I told a supervisor that I would have to leave work, suddenly someone forgot about all the work orders, paper work, etc. and the hard drive was on the floor 10 minutes later.
I must keep my head aligned correctly or I am in BIG trouble!

For myself, the thing that has made a significant difference in my life was finding a teacher of Alexander Technique. (www.alexandertechnique.com) It is better known in England, and also among theater folks, dancers, actors, etc. Basically, it is posture lessons. Teachers are not medically trained but do have some knowledge of basic anatomy. There is no force involved as in chiropractic. You are simply taught how to release tension in your muscles by lying on the floor, how to stand, sit, etc. so that your body functions, the way it was designed. My lessons cost $500 for a set of 10. It does take time and you must practice faithfully, at home. My teacher was very honest in telling me that he had never worked with someone with my degree of deformity. However, he was sure that A.T. would do no harm, and was willing to try, and see how things went. It was life changing, and I continued to see him for 2 more groups of 10 lessons each.

I am still on the floor every night for at least 20 minutes. I have had no reoccurence of the muscular spasms that made me miss work and ask for muscles relaxants from my doctor. Fortunately, the doctor's patient was the A.T. instructor, so the doctor was aware of the technique and how it might help me. I had asked for a referral to a physical therapist. An A.T. teacher does not "fix you." You are taught how to fix yourself. I think this might be something you should look into as other therapies have only contributed to your frustration and pain. Cheerio.

[maridane]

I got the signature "fibromyalgia" from my neuro

I've had a spinal tap, MRIs of the head and neck

all negative

I go to a rehabilitation doc right now and he says "there's no way it's fibro" as did another neuro I went to

the symptoms came on suddenly one day, starting with the shooting pains then moving to spasms in my shoulder, to an eventual atrophic right trap muscle

prior to that, I was diagnosed with migraines

that's about it
Look at your head MRI for Arnold Chiari Malformation 1. It is more often missed than it is diagnosed.
Symptom list can be found on
www.chairione.org

Doctors are now saying that there are over 100 symptoms associated with Chiari....
Marilyn

[rekor]

Look at your head MRI for Arnold Chiari Malformation 1. It is more often missed than it is diagnosed.
Symptom list can be found on
www.chairione.org

Doctors are now saying that there are over 100 symptoms associated with Chiari....
Marilyn


I've looked at that before

and I don't think I'm a candidate

there are just too many symptoms that I DON'T have on many of those lists

[rekor]

I have these minor spasms developing now in my right forearm

I also have a small spasm on my right eye

it's like I'm getting worse all the time

I'm going back to physical therapy tomorrow

maybe I'll have good news next time

[Tootsie]

Have you looked into Alexander Technique? Cheerio.

[waggoner1]

Just a thought... Muscle spasms/twitching/fasiculations can be caused by a potassium deficancy. Have any of your doctor's checked your potassium levels?