Bulbar questions

[Duker52]

I have bulbar onset. It started last August with slight slurred speech. In October I developed drop foot on my left side. By January my left hand started to go weak. An MRI indicated I had severe stenosis in my cervical spine. My hope at that point was that the spine issue was causing my problems so I had surgery in February. Fast forward two months and no change, so went to a neuromuscular neurologist who diagnosed me with ALS. This was confirmed by Johns Hopkins in May. My ability to speak is all but gone. My tongue on the left side is very weak so chewing is a challenge. I suggest you get a text-to-speech app for your phone or tablet -- it is a godsend to me and let's me communicate. My breathing is 71% so your fear of needing a ventilator might be premature. And, yes, most acidic foods burn my throat. Of course, my food sources are now limited to very soft food and Boost Very High Calorie drinks. Good luck with your second opinion. Just make sure Lyme disease and autoimmune disease have been tested, just to be certain. Bill

 

[Avarice]

Just make sure Lyme disease and autoimmune disease have been tested, just to be certain. Bill

Funny you mention that. Every GP and the neurologist have all dismissed the idea of even testing for Lyme. I mentioned having a rash at one point that resembled the EM rash that's associated with Lyme. But unless I can tell them I was playing with deer, there's been zero interest in even testing. Though to be fair, Lyme is extremely rare in San Diego. The first doctor did, however, run an HIV test.

 

[Duker52]

The autoimmune test that my neurologist ordered was not for HIV. All I know is it was very expensive and they came to my house to draw the blood -- they need to keep the blood under positive control at all times. Results take 2-3 weeks. In my case everything was ok, but he wanted everything covered to eliminate a diagnosis of ALS. And if you have to tell your neurologist you play with deer in order to get tested for Lyme, then tell him your best friend's name is Bambi.

 

[Nikki J]

I think the test you refer to Duker is the antiGM1 AB test. A common test to rule out mimics. It takes 2-3 weeks and is very expensive as you said. I am not sure why they had to come to the house I had mine drawn in the hospital lab

Lyme occurs in California. You could print out something from the CA DPH site or the CDC to show them when you ask again. It is not as big an issue as in other parts of the country but it is not non existent

 

[Avarice]

Thank you so much. My experience seemed so different. While in the ER they tried to at least consider other things, since then doctors seemed pretty focused on ALS. And maybe that's because the symptoms are pretty unmistakable. But there had never been tests or talk of testing anything else to eliminate other possibilities.