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hi all

well, this is my first post on this forum and like many other 'first-posters', i am scared, confused, wondering, depressed, anxious, and all the rest.

ok, to sum up what i'm about to write...i'm 41, a writer by trade (although my grammar in this post will probably state otherwise), highly active up until 4 weeks ago (i did african dance about 5 times a week as well as work out with weights about 4 days a week), and, long story short, i feel like crap.

in august, i started to notice that my left thumb was twitching, jerking this way and that whenever i was at rest. also, my hands shook uncontrollably when ever i put them in a certain position. i googled all this and, lo and behold, it was a sign of parkinsons. my heart went boomboomboom. my mind went ohmygod! i made an appointment with my GP. a week or so later he saw me. gave me a checkup and said i should be concerned. he referred me to a neuro.

a week later i was in the neuro's office, an anxious mess, and he gave me what i gather is the standard neuro exam. he finished, told me i wasn't crazy, and that something was definitely wrong with me. what was found? fasciculations, hyperreflexia, and clonus.

since that time, i've been noticing constant fasciculations in my left shoulder/tricep and my right as well as a feeling of jerkiness or spasticity all over my body. he sent me to get a c-spine mri. the initial report said that my c-spine was was that of professional football player at 50. but when he got them, he felt that the techs overstated it. we set up an emg.

around this time, i also got a severe case of paresthesia all over my back, arms, trunk, and legs. it lasted about three days. i've also continually had tingling/burning at various times at various points...all very temporary. i went back to my GP and asked him to do a round of blood tests. all the usuals. and the not so usuals. everything came back clean including the lyme tests. i explained to him that i had read that lyme doesn't always show up on the current tests and asked to be put on tetracycline. i'm currently taking 100mg twice a day.

while i was there, we both called my neuro. my neuro told him, without mentioning anything else like arthritis or cervical hernias, that als was in the differential. i should also mention that about three months or so ago, i had gone to my doctor because i had this constant lump in the back of my throat back near the tonsils (i can touch the area that feels off with my finger). he looked at and said it was post-nasal drip/sinuses. that feeling is still there...worse at night when i go to bed. i've also been having excessive yawning when dancing...whenever i pause, i yawn. a lot. i'm also feeling very weak...all over.

*sigh*

okay, fast forward through all the self-imposed (?) agony to last thursday. i had a nerve conduction test and an emg. he did my hands, feet, arms, legs, and upper back/neck near my spine. they came back normal. he said for me not to worry and that i didn't have als. his diagnosis...hyperreflexia and clonus sometimes just happen, i have carpal tunnel in the hands, some motor issues are being caused by c-spine, and BFS. we have a brain mri set up for two weeks from now.

not sure if any if this makes sense or what i'm looking for, but doesn't it seem odd that a lot of the symptoms i'm exhibiting line up with als, but are being pushed off to other causes? i'm so tired and weak all over. i'm depressed. anxious. scared.

ugh.

help?

ps - sorry for any mispelled words or grammatical errors. :)
 

ltr

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Hi Up and Down - that's how many of us here feel. Sorry you are feeling like crap and I really hope you get to the bottom of it. Were you seen by a general neuro or did you go to an ALS/MDA Clinic? If not, I suggest you get to an ALS Clinic to be examined and ruled out by the neuros in that specialty. The good news is the sensory problems you have are not very common in ALS. But, don't you love how, once you get a normal EMG, the docs act as if you're fine and nothing is wrong! If you need help finding a clinic near you let us know and we can help out. If you go to the MDA website and type in your zip code it will lead you to the nearest clinic, also. Keep us informed of what's going on and feel free to ask questions. Most importantly, call for your appt. tomorrow morning. Remember, there are a lot of things this could be, but anxiety will make all the symptoms worse. Hang in there. Leslie
 

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Make sure that when you retest for your lyme, you use IGENEX to testt, they are the best. Do the 6050 complete panel. I bet you have lyme or something else.

I would get a copy of your EMG. Who many limbs did they stick and how many times did they stick each limb done? Did they do the tonge? paraspinals? Other muscles?

Did they do the hand you were having problems with?

Go to the closest ALS clinic.

Good luck


Jamie
 

crystalkk

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Jamie,
how did you get the Igenex test was it something your dr ordered or did you do it on your own.

How are your treatments going, are you feeling any better?

I am pretty new here, but I have been reading everyone's posts.

crystalkk
 

ltr

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I was trying to hold off posting this, but since it is becoming a common topic on the forum, I feel it my duty to tell what I have heard. Please use the link below to see that Igenex is proven to give FALSE positive testing to just about everyone who sends there blood in. My neuro pointed this out to me saying that Igenex is causing people to become fanatical about Lyme. Reading stories about patients on Lymenet sounds like some of them are fanatical, claiming their entire extended families have positive tests from Igenex.

I hate to discourage anyone or take away their hope, but just like the posts on fake cures, this is another one to watch out for. After clicking the link, wait for the ad to pass and then read the NY Times story about Igenex and other labs.

http://www.nytimes.com/2005/08/23/h.../Organizations/F/Food And Drug Administration
 

Jamiet

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No doubt, you are correct about the controversy, but you are dead wrong about IGENEX.

I have two sets of test from IGENEX:

1st: Done April 2007
Results:
ELISA: Negative
Western Blot IGG: Negative by IGENEX and CDC standards
Western Blot IGM: Negative by IGENEX and CDC standards
DNA PCR: Negative

2nd: Done June 2007
Results:
ELISA: Positive 1:80 titer
Western Blot IGG: Negative by IGENEX and CDC standards
Western Blot IGM: Negative by IGENEX and CDC standards
DNA PCR: Negative

I personally callled the doctor that does the testing at IGENEX, spoke to him about the ELISA being positive. He dead out told me it could be a false positive, esp. with the negative WB's......

So, based upon this, being the ONLY test that has been positive for me in YEARS, i went to a specalist who specalizes in this (Lyme)....If anyone would like to see a copy of the negative test, i will provide one.

Next, he had me watch a video, then, they had a symptom chart with 38 items on it. I had 34 of 38 and 3 of the 4 i didn't have were for women only.

Next, he sat down with me, told me my test weren't impressive, but, my symptoms scream something and alot of them relate to lyme. He said, based upon what 5 neurologist (including an ALS specalist), a muscle biopsy, 2 GP's, 1 Internist have said (that nothing is wrong with me), that he would say with 95% certainty i have lyme.

Next, treatement was my option, not his. Finally, IV treatement was at my request.

You know, lyme is really controversial. Test are very inaccurate. People do go a little crazy on it, but, what if they have a yard of infested ticks, cats, dogs or some type of breeeding ground for this around. We don't know, just as we don't know about ALS, but they keep diagnosing it (ALS), attempting to treat it (ALS) and by far the test are NOT accurate.

so, in a nutshell.... Every single thing i've posted about lyme, i think i've started it with..."i'm not trying to gvie anyone false hope"....hell, i am not sold on it myself.

What i can say, i've spoken with Derek, a on-line friend of mine with ALS & lyme. Some parts are better and some are worse. Canadian Mike....getting better. There are several other stories. No one is promsing the world here, just...maybe we will help one person. Does this mean ALS is lyme...no way. If anyone wants to sit around and not fight to live another day, that is their decision, but i will keep searching as long as i don't have real answers. My treatment is experimental and maybe i'll get better, maybe not.


I've heard one or two stories on here where people have all the symptoms, went to the hospital, got IV Rocephin and their symptoms subsided. I have no clue if they are true, but we can ask them here. I don't remeber which person it was, but they are likely to read this.

Finally, Leslie, are these the same doctors that said that your positive Quest Western Blot test was inaccurate also, even considering you had the classic bullseye rash? Also, it seems they never did figure out what the guy in the article had and this was in 2005.

Again, it's controversial, i'm not telling anyone what to do, they are free to do their own will. I am trying something, searching for answers. I do know, IGENEX does report negatives. One thing on western blots is there are very specific lyme bands, i.e. - only bands that lyme produce. Even the CDC confirms it. I had a few of those very specific bands. Also, my CD 57 is very low, don't know why...but looking to find out.

I hope this clears things up, no harm nor false hope intended.
 

crystalkk

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Jamie,
As I orginally replied are you feeling any better?
Are you still getting treatments?
What are your symtoms?

crystalkk
 

ltr

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Jamie, I hope you know I was not pointing you out as being wrong. I know that you definitely do all your research, as do many of us, and that you clearly check things out before following through. I just wanted to point out another side of the story because I have extensively questioned my docs about my lyme test. When a person has been sick for an extended period of time the IgG bands are positive, NOT the IgM....that is why mine is negative. Mine was still showing an acute, early disease after a year of illness. And, if I was given a diagnosis of ALS, you better bet your life I would start the IV abx. But, there are many more articles about labs that do these tests than just the one I posted, I just didn't want to go overboard! I even called my neuro again today to ask if we should repeat it and got a whole lecture on why it is not lyme. I gotta go with what they're saying for now. But, Jamie, please don't be offended because that was not my intent. You're one of my buds!
 

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Leslie,

I know how you are, no offense taken..lol

We're all just trying to help one another..

but you do know, even under CDC guidelines, if either the IGG WB or the IGM WB is positive, you are considered positive? it does not have to be both or one in particular.

rgds,

jamie
 

ltr

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After reading your post I checked to see what I could find from the CDC. I am not sure this is the right site, but what I found was......

"Sometimes two types of Western blot are performed, “IgM” and “IgG.” Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive."

http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm

This is what my docs have been saying all along. I have been sick more than a year and the IgM would not be positive, only the IgG. Let me know if you have found something different from the government. Thanks for trying!
 

Jamiet

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i would get retested if i were you. you told me a while back you had the classic rash, then your IGM is positive? I don't know, but all i've read says if either one is positive, it's pretty convincing. Alot of readings also say just the rash is enough cause for concern? YOu live in a high risk area and no one can tell you whats up with you?

I don't trust the CDC also, their sensitivity in testing is like 68%, which means their guidelines only catch about 68% of cases.

if i got it, i will respond, if not, i'll move on to the next thing possible.



rgds,

jamie
 
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