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jasminn

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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.
 

lgelb

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I agree that this doesn't fit ALS, but is the sleep apnea being fully treated (e.g. w/ CPAP)? That could make all the difference whether you have a small fiber neuropathy or painful polyneuropathy, either of which can be associated with the antibody you mentioned. I didn't see any literature regarding an association with MND.

Good sleep is pretty important to dealing with any kind of nerve problem. Stress and diet are also mentioned as helpful in these conditions, and there will be some meds to try, inching up on the dose just enough, as with any neuropathic pain. There is also a Facebook group, evidently, that you can get invited to if you are not in it. All in all, the good news seems to be that you don't belong here. If your neuro doesn't seem up on these conditions, you can certainly go elsewhere -- I saw a Dr. Michael Lui w/ Hawaii Pacific who looks well-trained in what you need.

Best,
Laurie
 

jasminn

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Thank you Laurie, sincerely for taking the time to respond (side note, CPAP in use since December. I am slender and skinny neck, pre-menopause, so odd to have sleep apnea).

In trying to get dignified treatment, it seems the waters have been tainted by the same hypochondria rampant on this forum. I am not part of this problem, rather facing the resultant jaded medical. Disbelief from medical providers when you're losing muscles, and in pain, it's awful. (side note, TS-HDS stuff is new, ever evolving, just recently a study turned a bunch on the head about it. FB group, yes, almost no one there has neuromuscular issues).

The pain is in my muscles so neuro says that is not neuropathic; the burning and tingling subsided and turned into weakness, atrophy, myalgia, joint pain making it hard to stand/lie down even--why I cannot sleep.

I was curious if you or anyone could comment on the changed sensation to muscles (stringy, a massage doesn't feel good, etc). The neuro hears what I saw and blankly stares back, not inclining what if anything this may be symptomatic of.

I have read a few other posts, from you generous moderators, "hallmark of ALS is EMG findings long before weakness is even detected." So, if true 100% of the time, that does seem to rule out ALS (my neurologist doesn't speak with nearly such definitiveness). When you said, TS-HDS can be telling of polyneuropathy, I tried to get confirmation from my neuro as well that the 'hey I could have a nerve disease affecting my muscles but it just doesn't show up on EMG'--no neurologist says this cannot happen, that the NCS would show an axonal or myelin neuropathy. Anywho, life's taken a turn and I don't know where too. I appreciate your time, and kind words, Laurie!

Whatever has developed, it is unique, not fitting any progression either of two neuros have ever seen. Looke dup Dr. Lui; though it seems I might benefit going somewhere that sees a lot of volume (and ability to run tests) so they might actually recognize these symptoms....
 

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Sometimes, I'm afraid that when symptoms are vague like yours - generalised pain, tingling and aching, the only approach is to measure everything again after 6 months or so and see if there is a measurable change that can help pinpoint what is going on.

You say you cannot chew - so does that mean you are living on a smoothie diet? Have you had a swallow study done so that it can be shown clinically that you cannot? Bulbar ALS starts with chewing just fine, but you can't swallow, particularly thin liquids like water. In fact you feel completely normal, but you just cannot swallow. You say you cannot chew, but you don't mention speaking like a drunk person so that everyone notices?

Really there is rarely one single test that diagnoses anything. So the TS-HDS can be indicative of certain things, but it will be read in conjunction with other clinical or test findings.

ALS is diagnosed by a combination of clinical findings and EMG findings.

You aren't displaying either clinical findings nor EMG issues, so the symptoms you are experiencing are truly not seeming to be able to be linked to ALS in the slightest. This is great news, even if it doesn't tell you what is going on, it truly points clearly to what is not going on.

I can't imagine how hard this is for you to be sent from one place to the next and feel like you are being dismissed. We are not dismissing your symptoms, only telling you how they don't match ALS at all. I hope you find answers soon, I'm really confident you won't find them here however.
 

jasminn

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I appreciate the words and confidence. No matter what happens, if I can get through this that is, I am a life-long advocate for ALS. But for now.

Yes pronunciation is increasingly challenging and slurred. It's a problem such that I can't do interpreting now. I'm a linguist so before my major symptoms began (body-wide fasciculation and muscle changes) I noticed difficultly pronouncing flat a's (instead sounding nasally as if I were a New Yorker). I had begun (new) language classes, for my son's immersion language preschool in August when I first noticed and brushed it off. But now hard 't's are falling off, 'th' in English, and some others when I speak Spanish/Portuguese. My voice range has shrunk, losing mostly higher voice (I can't do lullaby's).

Swallowing is not my primary concern but it is more laborious. Chewing, my limits are like skin on apple, steak, as examples. Chewy dried fruits, impossible--this is really due to my tongue. It is shorter than it was a few months ago. Not pointed, as if the tip is missing and then it is like heart shaped (shorter in the middle) all the sudden. With some newly developed divets/scallops on the side.

Not a lot of my symptoms (slash none) line up with examples of functional neurologic disorder. I appreciate you sharing your experiences with this, and providing feedback including the words of encouragement.
 

lgelb

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As Tillie notes, one test doesn't decide your fate. I said that result was associated with some neuropathies, not that it was locked down. Your neuro is correct that certain neuropathies reliably show up on EMG. Not all nerve pain will be organized enough to show up there, was my point, and that there are still approaches to feeling better. For instance, if your foot was asleep, that would not show up on an EMG.

If the pain persists and has been fully addressed from the muscular standpoint, which is not currently the case, that's when you might start discussing medications that target neuropathic pain, at a very low dose.

If it is muscular (and there can be some of each -- nerve/muscle pain), it should respond to PT and/or speech therapy, so that would be a good test and your PCP can order some. They might also suggest an NSAID trial. Tongue stuff can be associated w/ everything from food allergies to dry mouth and GERD, so those are worth exploring fully with your PCP, esp. since CPAP if you are using a suboptimal IPAP, not enough humidification, not the best mask, etc. can cause dry mouth.

It is a myth that only guys w/ big necks get OSA, I assure you. For example, my SIL is quite slender and has it. Alcohol, other rec substances, and/or eating too much too close to bedtime are possible triggers, but often it just is and we don't know why. Nothing sinister.

I think we're all agreed that, fortunately, you don't belong here, and given you some alternative paths to explore, so I'm closing this thread. Please don't start another, but wishing you all the best. The answers you need are out there, with some persistence, but not here.

Best,
Laurie
 
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