Worried and confused

[Charles22]

Firstly, I want you guys to know I appreciate you taking the time to read my story.

I am a 37 year old male, father of a two year old and I am very concerned about the probability of having a bulbar ALS diagnosis.

Symptoms and dates:
1st week July 2018: buzzing in brain for 10 second intervals

2nd week July 2018: tingling in face and top of head
Mri of spine and brain - clean
Blood work - all normal

3rd week July 2018: tingling in left hand and right foot, extreme fatigue

1st week Aug: twitching starting in left thigh then after two days has spread around the entire body. Tingling has stopped except for right foot. Saw neurologist at university, reported brisk reflexes but no muscle loss. ordered EMG - also took a Lyme test, came back positive IGM and started 3 week course of doxy. Fatigue has abated.

2nd week Aug: light tiny twitches begin in both calves and are constant. Twitching s around rest of body is infrequent but happens. Began having swallowing issues

2nd week Sept: Issues the same (calf twitching, swallowing discomfort)
Had clean EMG and Nerve study on arm and leg - 3 places each

3rd week Sept: Start having neck pain, tightness, pain in spine between shoulder blades. Went to ENT, no problems found, had Barium swallow test - all normal - no aspiration

1st week Oct: Retake lyme test, says im still IGM positive but still IGM negative, also show Babesiosis Duncani infection. Swallowing problems have gotten better, some good days and some bad. Neck pain is managed by Aleve on bad days.

Current: Twitching in calves remains, neck pain has good days and bad, neck and shoulder muscles very tight, swallowing seems to be ok, may have to swallow twice sometimes, I do not have any muscle weakness or atrophy that I can see or tell.

Yesterday I went to a LLMD who was sure I have Lyme and that I have a mild form that has been in my system for 25+ years. He noticed my brisk reflexes and an "exaggerated" jaw jerk. He was also absolutely bat*hit crazy and thinks everyone has lyme. I am very concerned that I actually have Bulbar ALS and this massive dose of antibiotics is only going to hurt me. Nobody has told me I am slurring my speech and I dont believe I am either. My tongue feels strong and doesnt feel like its twitching. I realize that bulbar usually starts in the tongue and its average age of onset is even higher than standard ALS but statistics dont seem to calm my mind.

I have taken many blood tests, std tests, clotting tests etc. My symptoms point me toward ALS according to Dr. Google and I have been worried sick about this for months. I have managed to get my life insurance approved and am trying to prepare myself. I have read post after post on this forum for months and have finally decided to reach out. Again, your time and attention is so very much appreciated.

 

[dldugan]

You are doing the right thing by pursuing a definitive diagnosis. Took me some time and scores of tests to get one. I insisted I be referred to a good muscular neurologist at a top flight ALS Center who did an EMG of left side leg, arm, and back. He did many, many more points during the tests than the first neurologist. Keep up the pursuit.

 

[lgelb]

Yeah, stay away from LLMDs.

To what "massive dose of antibiotics" do you refer? 3 weeks of doxy is standard for Lyme. You didn't start something else, did you?

But you've said nothing that suggests ALS, bulbar or otherwise. How did you leave things with the neurologist and your PCP? Do they think you are still being diagnosed or have they cleared you of everything serious?

Best,
Laurie

 

[KarenNWendyn]

I agree your post doesn’t suggest ALS.

I’m curious about the Lyme disease. It is virtually unheard of in Texas. Did you previously live in an endemic area?

Here’s the map of Lyme Disease prevalence in the US:

https://www.lymedisease.org/clemson-tick-map/

 

[dldugan]

Lyme Disease cases are on the rise in Texas.

 

[Charles22]

I have not lived in an endemic area. I have been bitten by multiple ticks and one last year while in Ohio but I am skeptical of the infection regardless of the tests. The LLMD prescribed Minocycline and based of Dr. Google, that particular drug does have some success in treating neurological problems. So I figured I would give it a month and see if it made any difference in my symptoms.

My GP referred me to the neuro and the last time I saw the neuro during my EMG they said it was not ALS. But, they did not check my neck, tongue or Bulbar region. I do believe they are a competent outfit. I was not having my neck issues at the time of the EMG witch was a month ago. My next follow up is in mid November.