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jay23556
05-24-2014, 11:51 AM
Hi All. I've been given a possible diagnosis of ALS by a very reputable doctor, and alternatively have gone down the Lyme route to be sure and have had the contreversial Igenex test done that came back as positive for Lyme. Does anyone here have any experience with Lyme or this test in general? Any other PALS or diagnosed folks gone down this route?

max22300
05-24-2014, 01:24 PM
> I've been given a possible diagnosis of ALS

I would strongly encourage you to find an ALS clinic and get a 2nd opinion.

jay23556
05-24-2014, 02:11 PM
Already have, 3 docs confirm the same thing.

max22300
05-24-2014, 02:59 PM
>Already have, 3 docs confirm the same thing.

sorry to hear that! Best of luck and welcome to the club.

Max

jay23556
05-24-2014, 03:28 PM
I should correct that, 3 doctors gave me a "possible" diagnosis so I am still in limbo unfortunately. Anyone else been in the same boat.

vincent23088
05-24-2014, 04:55 PM
Welcome to my world. Diagnosed possible, on riluzole . Life would be easier knowing,I guess. However not knowing still means you may be 3and2 but still fouling pitches back. Good luck
Vincent

jay23556
05-24-2014, 05:07 PM
Thanks Vincent. I don't have much weakness, how about you? How long have you been "possible"? Have they ruled everything else out yet? Haven't started riluzole yet but have a bunch of supplements.

vincent23088
05-24-2014, 10:40 PM
I was diagnosed as possible on February 2nd and on riluzole since. The latest thing is IVIG to check for MMN. Tested for Gm1 antibodies, came back negative, but still inconclusive. As far as weakness goes I've been wearing an AFO for a year and a half. Also noticing hand weakness. So I'm still on the treadmill.
Vincent

jay23556
05-25-2014, 08:18 AM
Sorry to hear about the AFO, let's hope they find something else. If it wasn't for the fasics I probably wouldn't have caught anything else. It's either super early or they haven't found some other cause.

laurie10298
05-27-2014, 06:05 PM
Hanson,
Having researched the IGeneX/ILADS neck of the woods fairly extensively when I had disseminated Lyme myself, (I'm not the PALS), I would not regard your lab result as conclusive evidence of Lyme, particularly if both ELISA and Western Blot were completely negative on multiple occasions and you've had three reputable diagnoses of ALS based that included EMG/NCV testing. If you have ALS, it will progress and be unmistakeable. I would not begin any antibiotic or supplement course based on the supposition that you have Lyme based solely on this result, nor on the word of any "LLMDs." However, if you have significant symptoms that do not fit into the ALS differential, that began in the purported ALS onset period, I would discuss those with both your neuro(s) and an infectious disease specialist (one who treats all IDs, not just Lyme), as well as an internist.

stephen17202
05-28-2014, 02:34 AM
als diagnosis is a process of ruling things out. blood test for everything know to man kind, those electrode test, MRI, a course of IVIG( and we also did a nuclear batch of IV steriods), a course of antibiotics for lyme desease(our doc said "sure, go ahead, what could it hurt?") corrective disc surgery for an old injury, and finally a nerve biopsy.
Although it was, as they keep telling us, very slow progressing, it did progressed. We were told at this point that there was one other extremely rare thing it could be, cant remember what it was but it doesn't matter because when we questioned the Mayo doc about it he said the only way to find out was with a brain biopsy after death. sounds glorious doesn't it.
that year of not knowing was so hard

steve23790
06-05-2014, 01:15 PM
How were you diagnosed? EMG? My wife has NO weakness; has slurred speech, muscle fasciculations in arms, legs.

If you are positive for Lyme I would definitely pursue that. Check web for "when ALS is Lyme".

steve23790
06-11-2014, 06:48 PM
Hanson, any EMG test? If not, how did they diagnos? Seems like they are hanging on my wife's EMG as the determinate.

elizabeth23825
06-13-2014, 08:44 PM
Hi, my mother in law had testing done for Lyme when she was first diagnosed with Bulbar's Palsy. Her blood work came back showing both Lyme and heavy metals. She started antibiotics but didn't finish them because she was having too much difficulty swallowing the pills. I wonder if Lyme could be an environmental factor contributing factor for ALS.

I hope you are able to find an alternate cause to your symptoms. best of luck to you.