swskelto
Member
- Joined
- Jan 17, 2020
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IN
- City
- Boonville
Hello, everyone,
My name is Seth and I've been lurking on the forum for awhile now. Regardless of how things turn out for me, I want to say I admire your kind hearts and am thankful for the resources here. I'm sorry if this is too much information, but I figured it would limit the number of questions. I first went to the doctor in the Fall of 2018 at the age of 30. Here's my timeline:
2016-2018
Spring 2018
Fall 2018
Winter 2018-2019
I feel that the ALS Clinic neurologist should be my most reliable source, but the latest EMG has me doubting it. At the same time, the neurologist who did EMG #3 has almost no idea of my symptoms, etc. What are your thoughts? Thank you all for your time!
My name is Seth and I've been lurking on the forum for awhile now. Regardless of how things turn out for me, I want to say I admire your kind hearts and am thankful for the resources here. I'm sorry if this is too much information, but I figured it would limit the number of questions. I first went to the doctor in the Fall of 2018 at the age of 30. Here's my timeline:
2016-2018
- First notice of symptoms: intense exercise (sprints, basketball, etc.) would result in right leg buckling. Assumed I was getting out of shape.
- Buckling became more and more common. Rarely fell to ground.
- By 2018, buckling would occur 3-6 times a week from normal day-to-day activities (e.g. walking in the kitchen).
Spring 2018
- Tried running for the first time in months. Immediately noticed that legs felt very out-of-sync and it was very difficult to run. I again assumed I was simply out of shape.
- Began a running regiment of multiple miles per week. While I felt healthier/stronger, my running never felt normal again.
- Noticed some slight numbness down the center of my right thigh.
Fall 2018
- Noticed that my right thigh was visibly smaller than left. Went to general practitioner who agreed it was visibly atrophied and measured the difference.
- Right bicep (my dominant side) also measured smaller than left at the doctor, although not as drastically. I did NOT notice weakness in arms at this time.
- Noticeably cramping more often than before. Tried hydrating/eating better. Some improvement, but not much.
Winter 2018-2019
- Local neurologist did EMG #1. "Abnormal" in both my quad and bicep. NOT widespread and normal elsewhere.
- Nerve conduction studies all normal.
- Plethora of blood tests, urine tests were normal.
- Referred to IU Health in Indianapolis. Told their EMGs would be more reliable. EMG #2 showed same abnormalities on EMG. Not widespread and normal elsewhere.
- IU Health believed it was spinal compression, but lumbar MRI showed stenosis, etc., but did not match location of atrophy.
- Thoracic, Cervical, Brain, Pelvic/Hip MRIs were all negative.
- Second opinion by neurosurgeon confirmed the atrophy was not a result of nerve compression.
- Weakness in right leg continued to worsen. Buckling more common. Finding moderate difficulty in everyday activities (squatting, stairs, driving, etc.).
- First notice of weakness in arms. Not major, but also realized I was going to be "hyper aware" of symptoms by this point. Was not majorly concerned.
- Twitching began. Large, strong twitches in my atrophied quad. Occasional small, but visible twitches elsewhere (calves, feet, arms, hands, etc.). Assumed stress.
- Referred to local rheumatologist who said he was confident I had polymyositis and that it was muscular.
- MRI #6 on my right leg showed swelling.
- Biopsy intended to confirm polymyositis shows denervation, but says "RULE OUT MYOSITIS."
- Forwarded back to IU Health saying it is, in fact, neurological.
- Cramping continued to get more common and in unusual places (feet, hips, sides). If I flexed my atrophied quad it would stay contracted for 30+ seconds past me "releasing" it.
- My arms have gotten weaker, particularly my right bicep. I can now clearly notice a difference in strength between left and right. There have been a few moments where I have been surprised by this weakness. For instance, I realized while helping someone move a couch that the task was, for the first time in my adult life, impossible.
- IU Health mentions seriously for the first time that it is most likely an atypical form of ALS.
- More blood/genetic tests negative.
- Another EMG is ordered to check for progression.
- I make an appointment with the Univ. of Louisville ALS Clinic.
- Weakness in leg has continued to progress. Fell hard for the first time. Have since fallen 3 more times.
- Twitching has worsened. More widespread, more common, more noticeable. I also realized that I have visible twitching happening in my feet/ankles/calves even when I don't feel them.
- EMG #3 was done at IU Health, but not by the neurologist who is seeing my case. Going into it, I assumed this would confirm a diagnosis, but the neurologist doing the EMG said it still looked very similar to the EMG #2 done 11 months earlier. Abnormalities in both the quad and bicep, but not widespread. Even mentioned it could possibly be indicative of improvement. She said there were no fibrillations at rest. (OBVIOUSLY VERY HAPPY TO HEAR THIS AS I THOUGHT THIS PUT ME IN THE CLEAR!) However, she is not my doctor and, therefore, would not give me a real consult. She did not have a clinical observation or read my history.
- Following my EMG #3, I met with a neurologist at the Univ. of Louisville ALS Clinic. This is the only time I have visited.
- After the clinical observation and history review, he says he is 80% sure I do have an atypically slow form of ALS. He says he wants to do an EMG so he can assess it himself.
- February 3: my neurologist at IU Health
- February 10: visit Mayo Clinic in Rochester, MN
- March: my neurologist at the Univ. of Louisville ALS Clinic
I feel that the ALS Clinic neurologist should be my most reliable source, but the latest EMG has me doubting it. At the same time, the neurologist who did EMG #3 has almost no idea of my symptoms, etc. What are your thoughts? Thank you all for your time!