Update- Finally visted the neuro for ALS symptoms

Hi guys! I posted two months ago about being worried of Lyme turning to ALS. Well I finally got back from my neuro appt and I left feeling unsure. He listened to my symptoms and did the basic neuro test ( I’ve had it done by almost every MD I’ve seen) the whole “push your hand against mine”, “bend your foot down and up” and” walk in a straight line” type stuff.

I told him about concerning symptoms-
Body twitches all over and hard spasm at night
Pain/weakness in my left arm, keeps spreading now arm and shoulder
Shortness of breath, can’t laydown flat at night, standing can be difficult with a heavy feeling in my chest

He basically said he didn’t see anything indicative of ALS. Which I didn’t understand because he didn’t do anything to check for it, I thought? I was under the assumption that the minimum is nerve testing. I didn’t think you could tell someone yes or no to ALS based on looking at them. I really felt his answer was based on my age.
I’m 29, I’ve read about all sorts of people younger then me getting ALS. A lot of people’s early symptoms when they got diagnosed were really mild, such as there arms hurt when putting dishes away.

I would feel a lot better if he would do a nerve test. My arm has gotten worse in two months. It used to hurt and get weak from holding stuff to long but know evening sitting at my laptop holding my arm to the key board brings on weakness/ discomfort for hours following, and it recently spread to my shoulder blade and mid back. Basically any activity even mild causes weakness for hours following, I feel like I have to keep my left arm still.

My breathing is the most consuming, my ND thinks babesia but I don’t really have air hunger. I have chest pressure, tightening in my diaphragm, and trouble standing up strait because my chest makes me feel like I need to slouch over. I go back and forth between needing to be propped up when sleeping.

I don’t know what to think, I just wish the dr would have done a nerve test so I could have a defiant answer, if one even exist. I mainly want to know early so I could pursue alternative treatments.

So I was wondering If I should be confident with my neuro answer? Or seek a second opinion?
Thanks!

He should have at least ordered blood work and brain mri. Get a second opinion and a third or until you feel confident that every rock has been turned. I have been to 5 neurologists myself.

I forgot to mention I did get the neuro to schedule an MRI, I had to push him because I had one a year ago and everything was fine and he seemed to think it was unlikely anything changed. But he agreed to do another.

Girlie- I had to look up Babinski test lol, but yes I had that done. I’m so glad you mentioned a physiatrist, I’ve never heard of one and I looked them up and am going to see if I can get my Dr to refer me to one, Thank you! I was treating Lyme but started having some GI issues so I took a break for a few months while things calm down. My LLND learned recently you treat co-infections first. I think she’s starting to get more up to speed with things. So I’m just starting Bactrim and Mepon for babesia.

ela9049- I’m really considering it but I have to see if my insurance will approve a second opinion. They have to approve eeeeverything.

Springsjean- My neuro knew what Lyme was but was mainly concerned if I had a bulls eye rash at the beginning. I did get a huge round bite but it wasn’t exactly a bulls eye, so I guess it doesn’t count lol.

Hi. My mom (age 54) has ALS type neuro lyme so I can tell you our experience with the neuros. My mom first saw the first neurologist after 3 months of symptoms in July. He did an electomyogram by the third visit in August. At that time, they did called it "polyneuropathy" and it only affected the legs. We also had 4 MRIs-brain and the entire spine. All tests, including Lyme test 2 was negative. By then, that neurologist threw out the term "CIDP", whichis a chronic form of Guillain Barre. So we sought out a specialist in that field. By the time of that visit in Sept. my mom had tremendous difficulty walking, and it was the beginning of the slur. This is at 6 months of symptoms. We had a second EMG done, and at this point Lou Gehrigs came into the conversation. By November, we saw a third neurologist - an ALS specialist. My understanding is that neurologists are EXTREMELY reluctant to throw that term around, be it ALS, Lou Gehrigs, or Motor Neuron Disease because of the gravity of that diagnosis and the implications of it. That is why it took so long to get a diagnosis. Also, I did not start reading seriously into lyme until October-NOvember and could even get the signature for the lab tests until December, all the while my mom is getting worse.
I do not know if this helps. I will say this, if I knew then what I know now, I would have sent my mom to a lyme literate doc months ago!