jamie77
New member
- Joined
- Jun 19, 2023
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
First, my heart goes out to all affected by ALS, either as a PALS or CALS. I can’t imagine putting myself in any of your shoes but am thankful for the wealth of knowledge shared on this forum (“Read Before Posting” and countless CTBA thread responses). Not only is the information invaluable, but the people here are as well. My hope, by posting, is to gain knowledge applicable to my own health situation while being respectful of the health, experiences, and wisdom of others.
Second, I want to premise my post by sharing that I’ve seen my PCP (April 2023), a general neurologist (June 2023), and have testing scheduled (July 2023 -MRI (brain/cervical spine); EMG/NCD (with a board-certified Physical Medicine and Rehabilitation DO, with a subspeciality in Electrodiagnostic, Sports and Pain Medicine)). PCP and general neurologist clinical findings will be noted below.
My background – 46 year old, right handed female, whose profession is in the legal field. The latter is relevant for two reasons; 1) high stress and high risk for carpal tunnel, and 2) I am analytically adept in applying facts (subjective vs. objective) to analysis standards to come to a reasonable conclusion. I do not have health anxiety and rarely go to the doctor, even when, retrospectively, I should have.
***THANK YOU TO THOSE WHO TAKE THE TIME TO READ THIS AND POSSIBLY RESPOND.***
I first noticed health changes in spring and summer of 2022, but never sought treatment. The first was subtle, an overly sensitive gag reflex (deep kissing my husband of 24 years suddenly made me gag.) The second was weakness in my hands/wrists (dropped a baking sheet while trying to remove it from the oven; couldn’t open Amazon packages with just my hands anymore; couldn’t grasp or hold bulky or heavy boxes, hands freeze up while writing). I started experiencing cramping in my legs and feet. I also noticed just being more tired (stopped taking daily walks, cooking dinner after work and taking showers (easier to lay down in a bath)) and started periodically coughing or choking while eating and drinking.
In the early to mid-fall of 2022, started dropping light items (keys, phone) and tripping over nothing (even, obstacle-free surfaces, or the edges of low-pile area rugs). I was still tired all the time but was able to regularly climb three flights of stairs.
In late fall of 2022, I developed COVID and was really sick for almost two weeks. I recovered well, but in winter of 2022, my previous tiredness turned to extreme fatigue (unable to take stairs without being breathless, had to do Christmas shopping online rather than at physical stores) and had increased weakness/decreased dexterity in hands (couldn’t open flip-top bottles anymore) and start of weakness in legs (hard to walk or stand for too long).
I finally went to my PCP in February 2023 for the fatigue and an unrelated reason (multiple skin abnormalities dx as basal cell carcinoma (BCC); NOTE: BCC rarely metastasizes and labs clear me of any associated symptomologies). My PCP wasn’t overly concerned about the fatigue (I only mentioned generalized weakness), but did some blood tests (CBC, HIV, Hepatitis, CRP, Comp. Metabolic, TSH, CBC/PLT/DIFF) which all came back normal.
In late March/early April 2023, I started feeling fasciculations (electrical feeling under the skin) mostly at night. The fasciculations started in my feet and legs, but have spread to my trunk, glutes, arms and hands. (Note: previous to my feeling the fasciculations, my husband mentioned a month or more before that, “[my] hand was twitching” while we were watching tv in bed while holding hands.).
I went back to my PCP in late April. She did a general examination with no objective abnormal findings, (except for a possible Hoffman sign in my left hand). She did, however, reach out to neurology to explain my symptoms and they agreed to see me. More blood tests were ordered (Copper, Ceruloplasim, Vit E. Free Thyroxine, TSH, Hepatic Function, Comp. Metabolic, Magnesium, Electrophorserum Protein, Vit D) and all came back normal again. (Note: I rarely go to the doctor, so I think she took my concerns that something felt “wrong” more seriously.)
I finally saw the general neurologist earlier this month (June 2023). She did a quick exam but noted slight abnormalities in both arms: Triceps +1, Patellar +1, Thumb Opposition 4/5. She didn't say anything to me but noted in my chart that I am at increased risk for carpal tunnel, which I agree with. She also ordered two MRIs (brain/cervical spine) and an EMG/NCS, and yet, even more blood tests (Vits B12, B6, E, Magnesium, Iron studies, BMP). My MRIs, EMG & NCS aren’t for a couple more weeks, but all my blood tests came back normal again.
To date, I am in limbo, but the weakness in my hands/arms/legs is increasing (a full bottle of Corona slipped out of my right hand a couple days ago; my left leg gave out for no reason today and I almost fell, my left arm feels like I’m moving it under water. Note: months ago the underwater feeling was just in my hand and now it extends all the way to my shoulder). The cramping is occurring more frequently (stretching to reach something) and is now sometimes immediately followed by fasciculations and small jerking movements in my limbs. Bulbar related symptoms haven't changed or progressed though thankfully and i have no associated pain, numbness or tingling in limbs, hands, feet or anywhere.
I wasn’t concerned when all of this started because I thought I could explain it away by one or more things (stress, sleeping on my hands or arms wrong, dehydration, age, mineral deficiencies, long COVID, or just imagining it) but my symptoms are progressing.
I hold on to the fact that I haven’t truly lost any function (other than carrying heavy or bulky items). Here's my question:
******IF MY SYMPTOMS WERE BEING CAUSED BY ALS, IS IT LIKELY THAT I WOULD HAVE ALREADY COMPLETELY LOST CERTAIN FUNCTIONS? *******
I’m sorry for the long post. There is so much I left out, but wanted to make this post as short and easy to read as possible. Even if no one responds, I’ll post again after my tests and follow up with the general neurologist in July. I am hoping to report that its just painless carpal tunnel with no numbness, along with something like benign fasciculation syndrome. Thank you again for reading this.
Second, I want to premise my post by sharing that I’ve seen my PCP (April 2023), a general neurologist (June 2023), and have testing scheduled (July 2023 -MRI (brain/cervical spine); EMG/NCD (with a board-certified Physical Medicine and Rehabilitation DO, with a subspeciality in Electrodiagnostic, Sports and Pain Medicine)). PCP and general neurologist clinical findings will be noted below.
My background – 46 year old, right handed female, whose profession is in the legal field. The latter is relevant for two reasons; 1) high stress and high risk for carpal tunnel, and 2) I am analytically adept in applying facts (subjective vs. objective) to analysis standards to come to a reasonable conclusion. I do not have health anxiety and rarely go to the doctor, even when, retrospectively, I should have.
***THANK YOU TO THOSE WHO TAKE THE TIME TO READ THIS AND POSSIBLY RESPOND.***
I first noticed health changes in spring and summer of 2022, but never sought treatment. The first was subtle, an overly sensitive gag reflex (deep kissing my husband of 24 years suddenly made me gag.) The second was weakness in my hands/wrists (dropped a baking sheet while trying to remove it from the oven; couldn’t open Amazon packages with just my hands anymore; couldn’t grasp or hold bulky or heavy boxes, hands freeze up while writing). I started experiencing cramping in my legs and feet. I also noticed just being more tired (stopped taking daily walks, cooking dinner after work and taking showers (easier to lay down in a bath)) and started periodically coughing or choking while eating and drinking.
In the early to mid-fall of 2022, started dropping light items (keys, phone) and tripping over nothing (even, obstacle-free surfaces, or the edges of low-pile area rugs). I was still tired all the time but was able to regularly climb three flights of stairs.
In late fall of 2022, I developed COVID and was really sick for almost two weeks. I recovered well, but in winter of 2022, my previous tiredness turned to extreme fatigue (unable to take stairs without being breathless, had to do Christmas shopping online rather than at physical stores) and had increased weakness/decreased dexterity in hands (couldn’t open flip-top bottles anymore) and start of weakness in legs (hard to walk or stand for too long).
I finally went to my PCP in February 2023 for the fatigue and an unrelated reason (multiple skin abnormalities dx as basal cell carcinoma (BCC); NOTE: BCC rarely metastasizes and labs clear me of any associated symptomologies). My PCP wasn’t overly concerned about the fatigue (I only mentioned generalized weakness), but did some blood tests (CBC, HIV, Hepatitis, CRP, Comp. Metabolic, TSH, CBC/PLT/DIFF) which all came back normal.
In late March/early April 2023, I started feeling fasciculations (electrical feeling under the skin) mostly at night. The fasciculations started in my feet and legs, but have spread to my trunk, glutes, arms and hands. (Note: previous to my feeling the fasciculations, my husband mentioned a month or more before that, “[my] hand was twitching” while we were watching tv in bed while holding hands.).
I went back to my PCP in late April. She did a general examination with no objective abnormal findings, (except for a possible Hoffman sign in my left hand). She did, however, reach out to neurology to explain my symptoms and they agreed to see me. More blood tests were ordered (Copper, Ceruloplasim, Vit E. Free Thyroxine, TSH, Hepatic Function, Comp. Metabolic, Magnesium, Electrophorserum Protein, Vit D) and all came back normal again. (Note: I rarely go to the doctor, so I think she took my concerns that something felt “wrong” more seriously.)
I finally saw the general neurologist earlier this month (June 2023). She did a quick exam but noted slight abnormalities in both arms: Triceps +1, Patellar +1, Thumb Opposition 4/5. She didn't say anything to me but noted in my chart that I am at increased risk for carpal tunnel, which I agree with. She also ordered two MRIs (brain/cervical spine) and an EMG/NCS, and yet, even more blood tests (Vits B12, B6, E, Magnesium, Iron studies, BMP). My MRIs, EMG & NCS aren’t for a couple more weeks, but all my blood tests came back normal again.
To date, I am in limbo, but the weakness in my hands/arms/legs is increasing (a full bottle of Corona slipped out of my right hand a couple days ago; my left leg gave out for no reason today and I almost fell, my left arm feels like I’m moving it under water. Note: months ago the underwater feeling was just in my hand and now it extends all the way to my shoulder). The cramping is occurring more frequently (stretching to reach something) and is now sometimes immediately followed by fasciculations and small jerking movements in my limbs. Bulbar related symptoms haven't changed or progressed though thankfully and i have no associated pain, numbness or tingling in limbs, hands, feet or anywhere.
I wasn’t concerned when all of this started because I thought I could explain it away by one or more things (stress, sleeping on my hands or arms wrong, dehydration, age, mineral deficiencies, long COVID, or just imagining it) but my symptoms are progressing.
I hold on to the fact that I haven’t truly lost any function (other than carrying heavy or bulky items). Here's my question:
******IF MY SYMPTOMS WERE BEING CAUSED BY ALS, IS IT LIKELY THAT I WOULD HAVE ALREADY COMPLETELY LOST CERTAIN FUNCTIONS? *******
I’m sorry for the long post. There is so much I left out, but wanted to make this post as short and easy to read as possible. Even if no one responds, I’ll post again after my tests and follow up with the general neurologist in July. I am hoping to report that its just painless carpal tunnel with no numbness, along with something like benign fasciculation syndrome. Thank you again for reading this.