jasminn
New member
- Joined
- Dec 12, 2021
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- HI
- City
- hana
Hello good people,
I am 38 F. I fell ill last year. First symptom Aug '21 muscle spasming in my throat area, about 3 weeks after vaccination and viral infection. My upper back would feel hot/burning off and on. My face began sagging, first in the lower part of my face, and my joints started hurting. Things escalated in late Oct '21. My upper back felt as if it was burning; I attributed this to my skin though over the next few months months the sensation transitioned into tingling, then a painful stringy feeling in my traps (muscles). Shortly after the more noticeable burning started, my whole body started spasming and twitching (smaller mini spasms). It was odd how every muscle, even my diaphragm was affected. Then another muscular activity began after about a month, which is like my muscles tense up from like one joint to the other and stay that way. Over the next few months in the fall, I saw my face become saggy, weak, and I can hardly chew--I cannot flex the jaw muscles when I clench, and my tongue does not protrude out of my mouth like it used to (you make a lot of faces when you play with toddlers as I have two). The only diagnosis I have is obstructive sleep apnea.
The tingling electric feeling all over my body, which would get stronger after eating meals, wore off around January. At that time I had a preliminary NCS, normal. I want to celebrate, but continue feeling worse. The sensation in my muscles is completely altered, I cannot explain but as if the muscles lack vitality, a massage feels nothing like massage. For a while, massage would send sparky feelings in all directions. Now it is just lifeless feeling. My ribs and collar bone, and shoulder blades are all visibly perturbing from muscle loss. The weakness is life altering, even to sleep I cannot use a pillow like one would--I use the pillow in reverse fashion, to prop my back up from the base of my head to my tail bone. Otherwise, I have slipped discs in my neck and lower back just sleeping flat. My joints are awfully painful (and I have never had a slight sign of inflammation, had hundred + blood tests so they say I dont need to see a rheumatologist). I tested positive for a non-specific antibody called TS-HDS, some say it is associated with small fiber neuropathy other say with neuromuscular disease. Tried IVIG, for this, and no noticeable results.
I passed a second, more thorough but still relatively rapid nerve study this month, April '22. It was completed, I was told 'completely normal' then I looked at the neuro and insisted he look at my legs actively spasming. He reinserted the needle and found 'fasciculation' presumed benign. He did not test the muscles of my primary complaint--traps, jaw, saying these are not conducive for needle study.
I continue with no meaningful diagnosis, and with two small toddlers it is not easy to proceed blindly. The neuro thinks time will tell, just has me slated for a regular office visit in four months. I have a limited medical plan, you have to stay in network or to get an outside referral it takes a lot of cheerleading from your doctor--which I do not have. He keeps asking me to accept that I am fine, but as a non-hypochondriac who spent my life before this avoiding doctors, I know better. I am misconstrued by neuro seen as sad and depressed, though I try to explain my face is drooping and how hard it is to smile. In addition to the muscular issues, I have developed an intolerance to heat. It causes malaise, and I do not sweat --and I used to sweat. My neuro (and he is a good person don't get me wrong) keeps downplaying this, as if diagnosis is neither here nor there.
I am hardly articulating a question. I sit here frozen, I feel relief when I think about how atypical my symptoms are --for MND, with all the pain. If this just starts getting better, hallelujah. But in the meantime, I am not sure if I like my Neuro's wait and see approach.
I am 38 F. I fell ill last year. First symptom Aug '21 muscle spasming in my throat area, about 3 weeks after vaccination and viral infection. My upper back would feel hot/burning off and on. My face began sagging, first in the lower part of my face, and my joints started hurting. Things escalated in late Oct '21. My upper back felt as if it was burning; I attributed this to my skin though over the next few months months the sensation transitioned into tingling, then a painful stringy feeling in my traps (muscles). Shortly after the more noticeable burning started, my whole body started spasming and twitching (smaller mini spasms). It was odd how every muscle, even my diaphragm was affected. Then another muscular activity began after about a month, which is like my muscles tense up from like one joint to the other and stay that way. Over the next few months in the fall, I saw my face become saggy, weak, and I can hardly chew--I cannot flex the jaw muscles when I clench, and my tongue does not protrude out of my mouth like it used to (you make a lot of faces when you play with toddlers as I have two). The only diagnosis I have is obstructive sleep apnea.
The tingling electric feeling all over my body, which would get stronger after eating meals, wore off around January. At that time I had a preliminary NCS, normal. I want to celebrate, but continue feeling worse. The sensation in my muscles is completely altered, I cannot explain but as if the muscles lack vitality, a massage feels nothing like massage. For a while, massage would send sparky feelings in all directions. Now it is just lifeless feeling. My ribs and collar bone, and shoulder blades are all visibly perturbing from muscle loss. The weakness is life altering, even to sleep I cannot use a pillow like one would--I use the pillow in reverse fashion, to prop my back up from the base of my head to my tail bone. Otherwise, I have slipped discs in my neck and lower back just sleeping flat. My joints are awfully painful (and I have never had a slight sign of inflammation, had hundred + blood tests so they say I dont need to see a rheumatologist). I tested positive for a non-specific antibody called TS-HDS, some say it is associated with small fiber neuropathy other say with neuromuscular disease. Tried IVIG, for this, and no noticeable results.
I passed a second, more thorough but still relatively rapid nerve study this month, April '22. It was completed, I was told 'completely normal' then I looked at the neuro and insisted he look at my legs actively spasming. He reinserted the needle and found 'fasciculation' presumed benign. He did not test the muscles of my primary complaint--traps, jaw, saying these are not conducive for needle study.
I continue with no meaningful diagnosis, and with two small toddlers it is not easy to proceed blindly. The neuro thinks time will tell, just has me slated for a regular office visit in four months. I have a limited medical plan, you have to stay in network or to get an outside referral it takes a lot of cheerleading from your doctor--which I do not have. He keeps asking me to accept that I am fine, but as a non-hypochondriac who spent my life before this avoiding doctors, I know better. I am misconstrued by neuro seen as sad and depressed, though I try to explain my face is drooping and how hard it is to smile. In addition to the muscular issues, I have developed an intolerance to heat. It causes malaise, and I do not sweat --and I used to sweat. My neuro (and he is a good person don't get me wrong) keeps downplaying this, as if diagnosis is neither here nor there.
I am hardly articulating a question. I sit here frozen, I feel relief when I think about how atypical my symptoms are --for MND, with all the pain. If this just starts getting better, hallelujah. But in the meantime, I am not sure if I like my Neuro's wait and see approach.