Mfan
New member
- Joined
- Nov 20, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- AR
- City
- Dover
Any insights appreciated. I respect your knowledge and opinions. I streamlined as best I could. Thank you for this outlet and allowing these kinds of posts.
-male, 47, great health until 2 years ago, though have sinus issues and family history of essential tremors. My symptoms not as bad as dad and grandmother. Just some minor movement with hands that increases a bit after physical activity.
-January 2021 left eye inflammation
-October 2021 GP suggested allergy shots
-January 2022 inflammation finally resolved with new treatment, ophthalmologist said autoimmune issue likely
-extensive testing with rheumatologist, nothing found related to autoimmune issues, dry eye issue emerged, tingling sensations in extremities with occasional numbness.
-February 2022 new internal chest tremors
-March 2022 vision issues including light sensitivity, resolved
-Early May 2022 upper left chest pains led to ER visit. Nothing found
-Late May 2022 left hip pain and left leg twitching, chest tremors continued, upper left stomach/chest pains led to wearing of heart monitor, nothing found, requested neuro referral
-Early June 2022 twitching in other areas of body, perceived left arm weakness, tingling feelings up neck and around head. Continued pains in upper left stomach and back led to suggestion of gallbladder removal. GP and surgeon debate the necessity of it. GP puts me on PPI. Body jerks begin. Endoscopy and colonoscopy suggested by surgeon. Gallbladder removal scheduled.
-Late June 2022 see neurologist. Clinical comes out clean. Says check back in 6 months. Leave his office and go for weekly allergy shot. Within 10 minutes, head tingles, yell for allergist, hit the floor. Go to ER, EMTs say seizure, and hospital calls neurologist.
-Early July 2022 get EEG and brain MRI. Both OK according to neurologist's physician assistant. She says I have BFS and that neuro says stop allergy shots. Not sure what happened. Allergist insist was not anaphylactic shock. October follow up with neurologist scheduled.
-Late July twitching continues, body jerks subside. Back pain in multiple places.
-Early August gallbladder finally removed.
-August until mid-October twitching comes and goes... progressively reduces leading to neuro appointment. Loose stools and some regurgitation, presumably gallbladder removal related.
-Mid-October neurologist asks if things are better. I say yes. Does no clinical to compare to initial visit. Heads out of office and says something to the effect of "I was leaning toward something bad, but now I don't know." Check back in 6 months. I was shocked. Didn't expect him to say that and he gave no indication as to why he did.
-Late October twitches increase. Tongue feels numb on tip. Area around my nose feels numb. Fatigued. GP checks for iron deficiency and finds none.
-Early November 2022 body jerks return. Small movemements in left arm at anytime. Specifically I lay down to sleep and something feels off. I know what hypnic jerks are and have had them. This seems different, more like an energy surge. Anyway, a leg or arm jerks, but it is usually the head.
-Early to mid-November 2022. Waking up daily with chest and upper arms shaking. Have throat sensation like tightening. Perceived throat soreness. Swallowing seems more difficult. I speak for a living and mouth starts to tire easily through the day, even on days I do not talk as much. Notice larger amounts of saliva in the mouth. Tongue feels swollen. Muscle pain in arms and jaw pain. Pain behind right shoulder. Feet stay cold.
-Last week had appointment with GP to ask about recent issues. He cancelled due to sickness. Went to walk in clinic and they tested for strep in addition to blood work for autoimmune issues, celiac, and thyroid problems. All non issues.
Thoughts?
-male, 47, great health until 2 years ago, though have sinus issues and family history of essential tremors. My symptoms not as bad as dad and grandmother. Just some minor movement with hands that increases a bit after physical activity.
-January 2021 left eye inflammation
-October 2021 GP suggested allergy shots
-January 2022 inflammation finally resolved with new treatment, ophthalmologist said autoimmune issue likely
-extensive testing with rheumatologist, nothing found related to autoimmune issues, dry eye issue emerged, tingling sensations in extremities with occasional numbness.
-February 2022 new internal chest tremors
-March 2022 vision issues including light sensitivity, resolved
-Early May 2022 upper left chest pains led to ER visit. Nothing found
-Late May 2022 left hip pain and left leg twitching, chest tremors continued, upper left stomach/chest pains led to wearing of heart monitor, nothing found, requested neuro referral
-Early June 2022 twitching in other areas of body, perceived left arm weakness, tingling feelings up neck and around head. Continued pains in upper left stomach and back led to suggestion of gallbladder removal. GP and surgeon debate the necessity of it. GP puts me on PPI. Body jerks begin. Endoscopy and colonoscopy suggested by surgeon. Gallbladder removal scheduled.
-Late June 2022 see neurologist. Clinical comes out clean. Says check back in 6 months. Leave his office and go for weekly allergy shot. Within 10 minutes, head tingles, yell for allergist, hit the floor. Go to ER, EMTs say seizure, and hospital calls neurologist.
-Early July 2022 get EEG and brain MRI. Both OK according to neurologist's physician assistant. She says I have BFS and that neuro says stop allergy shots. Not sure what happened. Allergist insist was not anaphylactic shock. October follow up with neurologist scheduled.
-Late July twitching continues, body jerks subside. Back pain in multiple places.
-Early August gallbladder finally removed.
-August until mid-October twitching comes and goes... progressively reduces leading to neuro appointment. Loose stools and some regurgitation, presumably gallbladder removal related.
-Mid-October neurologist asks if things are better. I say yes. Does no clinical to compare to initial visit. Heads out of office and says something to the effect of "I was leaning toward something bad, but now I don't know." Check back in 6 months. I was shocked. Didn't expect him to say that and he gave no indication as to why he did.
-Late October twitches increase. Tongue feels numb on tip. Area around my nose feels numb. Fatigued. GP checks for iron deficiency and finds none.
-Early November 2022 body jerks return. Small movemements in left arm at anytime. Specifically I lay down to sleep and something feels off. I know what hypnic jerks are and have had them. This seems different, more like an energy surge. Anyway, a leg or arm jerks, but it is usually the head.
-Early to mid-November 2022. Waking up daily with chest and upper arms shaking. Have throat sensation like tightening. Perceived throat soreness. Swallowing seems more difficult. I speak for a living and mouth starts to tire easily through the day, even on days I do not talk as much. Notice larger amounts of saliva in the mouth. Tongue feels swollen. Muscle pain in arms and jaw pain. Pain behind right shoulder. Feet stay cold.
-Last week had appointment with GP to ask about recent issues. He cancelled due to sickness. Went to walk in clinic and they tested for strep in addition to blood work for autoimmune issues, celiac, and thyroid problems. All non issues.
Thoughts?