New Symptoms. Please help.

[Christopher843]

Hello, my old post was closed so I've summarized it below in a more simple and streamlined form, with the addition of my new symptoms:​





Q1 2016 - slight essential tremor in my hands.


Q2 2016 - persistent, 24/7 tightness in both calves, which eventually spread to gluteal areas. Gluteal areas ache.



Q3 2016 - slight imbalance while standing completely still, taking a knee, or moving in dark.



Q3 2016 - clicking/lumpy sensation when drinking liquids. When eating crumbly foods, I must cough them up a few times and re-chew.



Q4 2016 - grip strength in both hands diminished slightly - dropping keys, pieces of toast etc. Judo grips feel harder to maintain.



Q4 2016 - First MRI. MRI showed small lesions all over my brain.




Q4 2016 -Neurologist gave me physical exam. Passed. Neurologist suspected MS due to presence of lesions. Lumbar Puncture performed. During LP I mentioned a worry about ALS. His response: "If I thought you had ALS, I'd tell you". Lumbar Puncture came back all good. Booked a second MRI in 6 mo. for comparison.



Q1 2017 (March) - eyes have felt like they are extremely fatigued 24/7 regardless of rest.



Q2 2017 - Second MRI - no changes in lesions. Neurologist states that lesions are not related to my symptoms and that they were a thing of the past.



Q2 2017 - Saw different Neurologist for a second opinion. He reviewed all of the above and the tests I had been through. He gave me an elaborate neurological exam (spreading fingers apart, walking on heels, rising up on toes on each leg etc.) Passed. He stated that he doesn't think I have ALS. He said if I had a serious neurological disease, then I wouldn't be able to run, practice Judo or serve in the military part time as I do. He said unless something drastic occurs (violently choking on food etc.) then he recommends doing a final MRI April 2018 and to see him again then to review symptoms.



Q2 2017 - writing became sloppier, must focus and slow down to write neatly.



Q2 2017 - persistent tightness/ache in both inner forearms.



Q3 2017 - muscle twitching on bottoms/insteps of both feet.



Q3 2017 - persistent tightness & ache in both palms.




On and off throughout all of the above: pins & needles-like sensations and muscle twitching in arms, legs, shoulders back. Burning sensation in thighs when climbing stairs.





My biggest fear at this point is if all of the above is a precursor/harbinger of ALS. The internet varies widely on what the earliest, pre-clinical weakness symptoms are, if anything at all. Some websites say the onset is "subtle and insidious" and other websites say clinical weakness is the first symptom. I haven't lost any discernible strength - my running is comparable to before, and new opponents in Judo tell me I'm strong. I realize that's not scientific criteria, but it's all I have to go on in addition to the two neurological exams I've passed. Whatever I have is obviously spreading, which concerns me. It feels "insidious". I looked up BFS, and I have 12 out of the 14 symptoms listed on Wikipedia. Could that be it? I'm also booked in for counseling at the end of the month, because the stress that comes with my fear of ALS is taking a severe toll on my family life.



Thanks for looking over my symptoms again and sharing any valuable knowledge and experience you have in regards to my symptoms and the fear and anxiety they are causing me.

 

[Nikki J]

The insidious onset I believe generally refers to a subtle loss which translates into clinical weakness when explored by a clinician. Onset is usually subtle except in those with the most aggressive forms but it does involve some small failure in one area. Examples my sister could not do up a button. In spite of family history thought little of it until , over a couple of months, there were more things she could not do. She felt fine, just thought it odd that that function was gone. Another example would be someone who started tripping ( exploration would show foot drop but most think " oh I was clumsy" at first)

Vague and diffuse symptoms over 1.5 years and normal exams by 2 neurologists who apparently found neither upper motor neuron signs or clinical weakness and told you not ALS would make me look elsewhere. If you find your symptoms match with bfs have you asked your doctors about it?

 

[Christopher843]

Thanks for your reply. I didn't come across the BFS symtoms list until after my most recent Neurologist visit, the second one. My GP is completely at a loss and just says I need counseling. I (ignorantly) thought BFS was just twitching. I had no idea it involved a whole host of neurological symptoms. I'm seeing the second Neurologist again in 2018. I will ask him if it's BFS then. It's a long time to be stuck in the unknown with these spreading symptoms.

 

[Christopher843]

I read this today and the attached excerpt is one of the things that is keeping me sane right now.

http://www.bcmj.org/article/amyotrophic-lateral-sclerosis-review

All of my symptoms have been entirely symmetrical since day one. Both calfs, both glutes, both eyes, both arms, both palms/hands, and both feet.