Thread: Lyme or ALS
View Single Post
Old 02-04-2015, 05:54 PM #1 (permalink)
chris25370's Avatar
chris25370 chris25370 is offline
New Member (Say Hi)
 
Join Date: 2015
Posts: 4
chris25370 is on a distinguished road
chris25370 chris25370 is offline
New Member (Say Hi)
chris25370's Avatar
Join Date: 2015
City: Cypress
State: TX
Country: US
Posts: 4
chris25370 is on a distinguished road
Default Lyme or ALS

Good afternoon. First, my apologies if this is a repost. I just wrote a lengthy submission and it seems to have gone into internet limbo. I'll try to be more brief in this one.

I have been lurking around this site for the past several months while visiting neurologists and doctors, and my symptoms have finally progressed to the point that I thought Id stop by to say hello and ask a question or two.

First, my background. I am a neurologic physical therapist with >5 years experience in treating conditions including MS, parkinson's, GBS, stroke, TBI and SCI. I recently had the opportunity to work with a very progressed PALS, but until then I had not seen ALS in my career. So, while I know the basic signs and symptoms of ALS, I have very little practical experience in differentiating it from other things, and am unclear about how it initially presents itself.

I have been having mysterious symptoms for the past year and a half since I was bitten by a tick on a hunting trip in NE Texas. Within a few weeks of the trip, I developed a myriad of symptoms including fever, malaise, body aches, night sweats, hot flashes, photophobia and blurry vision in one eye, weakness, and profound fatigue. After visiting four very confused and disbelieving doctors, I finally tested positive for lyme disease and babesiosis. I sought out a lyme specialist in Dallas and started what would become a year and a half journey towards wellness as I took nearly 30 different pills and supplements a day. I gradually got better, and the symptoms are 99.9% gone now. I am set to stop antibiotics within a few weeks. YAY!

Anyway, all was going very well until this November, when I began to notice a strange heavy and fatigued feeling in my R ankle and cramps in my R forearm. There was (and still is) no measurable strength deficit, and I was able to do everything that I was before, but it felt like my R side was working twice as hard as my L. If I climbed a flight of stairs, my right leg felt like I had climbed 20. Also, I began to notice fasciculations in both calves and occasionally in my R shoulder. I mentioned these symptoms to my lyme doc and he didn't think that it could be lyme since I had been responding so well to the meds up to this point. He advised that I go see a neurologist.

I did go to a neurologist who ordered a MRI of my brain and c-spine, took a ton of labs, and ran a surface and needle EMG on my right arm and leg, all of which came back negative for anything. He told me to follow up with him in 3 months, so until march, I am just sitting in a holding pattern.

Since my visit in December, my symptoms have progressed. The fasciculations in my calves continue, and occasionally, I will have one or two in a quad, shoulder, or forearm. I now feel slightly weak and clumsy in both hands (particularly in my 4th and 5th digits). My hands and forearms cramp up after typing a long message or email. My r foot still isn't noticably weak and I can walk on my heels or toes, but It feels like I have to try extra hard to keep my foot level when I walk. Also, when I eat a meal that requires a lot of chewing like steak or crunchy lettuce, my tongue and lower jaw gets very fatigued. While these symptoms never do go away, they do seem to fluctuate based upon how rested I am. Some days, I can barely get through the day, and others I barely notice that anything is wrong. Still, the trend has been toward getting worse.

Finally to my question. Could I be unlucky enough to get both lyme disease and then ALS, or is this just more likely some strange manifestation of lyme? I know that you all aren't doctors, but perhaps you can enlighten me to how your symptoms very first presented themselves. Was there a period of mild weakness before frank paralysis, or did it just start as foot-drop/ slurred speech, etc..? Also, from what I have read on this site, ALS usually picks a single limb or bulbar onset to start. The fact that I have symptoms in my tongue, and in all four limbs doesn't seem like ALS, or does it? Anything that you guys and gals could do to shed some light on how your ALS initially began would be helpful. I would love to be steered far away from this devastating diagnosis.

Kindest Regards,
Limeguy
chris25370 is offline