Scared & Unsure

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Ponderosa

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Hi, on mobile so sorry if formatting is a bit off. And my apologies in advanced if anything comes off as insensitive to this community, I'm genuinely worried but of course am still learning.

I am a 30F, and all this officially started in November of 21. Here is a timeline/summation:

*Woke up one morning "feeling" my upper hip. Hard to describe, but more like a sensation of being touched without pain. 2 weeks go by, twitching begins in same area. Sometimes hyper fast, sometimes one-offs, ongoing in same spot for ~2 weeks. Sometimes a light tingle and a strange sensation in full leg. Like a nervous feeling, almost like a tingle, but otherwise unaffecting mobility.
*See my GP after 3 weeks, get sent for Xray and PT. Nothing conclusive, but hip issue goes away on its own.
*During the hip fiasco, I Dr. Google the twitching out of curisoity and right away find ALS. Not gonna lie, I freaked. I start reviewing some symptoms so I can calm down and get it out of my mind, but end up back tracking small things and become aware of body-wide twitching and random muscle jerking
*Between hip issue and my 12/8 appt, continue observing body-wide twitches. As of date, cannot think of one place where I have not had a fasiculation. They sometimes hang out in one spot for extended period of time (one and off in cheek/nose/lip for a week as an example), but often are one hit wonders literally anywhere/everywhere. Some days they are very active, some days medium active.
*I also start having an issue with falling asleep, especially for naps. As I begin falling asleep, I often get jolted awake as if being pushed. This happens frequently and only as falling asleep. I am also having random body jerks, notably in left ankle and left shoulder. Not super frequent, but more often when laying down.
*See my GP again in Jan and explain new symptoms. At this point, I have also experienced both tingling/burning in my tongue as well as twitches. She refers me to a neuromuscular disease specialist especially concerned with my tongue and, side note, an oncologist due to ongoing elevated wbc (~12.5, so high but not really high)
*At this point, VERY scared and stressed. I know this can cause any of the above issues to flare up, which is why of note
*Unfortunately, earliest neruo appt is 3/25
*Go to onc week after my GP appt and rule out blood cancers, but do get some interesting bloodwork back. My sed rate is 43, which I am told is high and is a generic test indicating my body is fighting an infection. Seeing the onc for follow up in June, but dr suggests sed rate may be tied to my neuro issues. Also of note, I have Vitamin D and folate deficiencies, but B12 was good
*More symptoms appear quickly between Jan-Feb: "weird" feelings (like the nervousness/tickle described above) in limbs and in throat, start getting a feeling in my throat like someone is pressing on my gag reflex but at random times/no initial relation to eating or drinking, buzzing or tingling (maybe twitching? Idk) in back of mouth, tongue tingling for 3 weeks sometimes also with twitching. I also wake up one day with that weird feeling in both ring fingers going up to my elbows. My arms feel weird for 4-5 days until it goes away in right arm. But it stays in left arm for another week until it starts aching. Again, out of nowhere the hand and arm feel weird and just begin to hurt/feel sore. As of today (1 month after weird arm), the arm has a general feeling of sorness but hard to say if weakness? The bone feels like it hurts and my arm gets made if I use it a lot during the day. That said, I have not noticed a particular decline in grasping, gripping, or lifting. At least in terms of ability to do so.
*I see GP again for throat issue, as it begins happening more. I do not have to actually gag, the reflex just seems to randomly be triggering. Also noticing more phlem at times, but I take zirtec and flonase due to post-nasal drip so attributed it to that. Get a thyroid ultrasound and it is relatively normal, am told to give it some time.
*Late Feb, I also begin experiencing minor cramping in back of legs and feet and hands. These have been happening last 1-2 weeks but are generally mild but adding stress as this can be another check in the box. And almost overnight (2-3 days) start getting that same soreness in my shoulder, right arm, and legs. Lasts a few days, then comes and goes since. Depends on the day tbh.
*Side note, as not sure how long have had this, but I have been finecomb toothing everything. At times, my left knee ever so slightly gives out.
*Speed up to past Friday, I run a 5k and feel generally good but a bit sore (to be expected). But then notice over next 3 days I start experiencing a perceived breathing difficulty. Tight chest, lump in throat, feel like I need deeper breaths. My o2 is fine but nurse on call has me go to urgent care to be safe. My chest x-rays come back fine so I am sent home with "anxiety" but no improvements. Followed up Monday with GP, she thinks it is possibly GERD but I have a chest CT on Friday and earliest GI appt is 4/25. She put me on an inahler and omeperazol? but symptoms persisting hours and hours after eating so not sure about this one. Of course worried it is connected to my neuro issues. Swalloing is mostly good, but do feel like there is a marble stuck in bottom of throat like a partial block.

The above is the most pertinent info from the past 2-3 months. For me, the quickness of everything and unknown has been really as difficult to cope with. I am going to mention a few things below that may or may not be related to my neuro things, was not sure if they fit tbh.

*Both my right and left upper legs (half) have been partially numb since 2018ish. I had a repaired herniated disc, so always attributed it to that but idk now. Affected areas have feeling....but like are at 50%
*As noted, sed rate = 43
*Low folate and low Vitamin D
*Experiencing the occasional tingles in back of head, bottoms of feet, right leg, and hands. A lot in tongue though
*I experience a jolting up my right arm if I am sitting, lean on it, and move it too suddenly
*Recently was flagged as potentially having glaucoma, but turned out it was just really enlarged optic nerves. Assuming recent to last 2 years since not previously noted by eye drs

Thank you for all thoughts/feedback.

Not sure if I can edit the above - but wanted to note my biggest fear is the twitching of my tongue. It started on Christmas (two times) and comes/goes, sometimes with none of a whole week. But I've also had periods where it bugged me all day. I'm not sure if tongue tingling/burning is normal, since I read tingling is not normally associated with ALS. Tongue tingling came up a lot with MS during my searching, but from reading many different stories, it's hard for me to distinguish what is normal v. what isn't. I haven't had any issues with speech or tongue strength, but this was also what alarmed my GP and got me a straight referral to a neuromuscular disease specialist (she hopped me past general neuro).
 

Clearwater AL

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Get Real
For what it's worth before others reply to your very lengthy, numerous
unrelated ALS symptoms...

Many people with Health Anxiety are often unable to function or
enjoy life due to their fears and preoccupations. They become
preoccupied with bodily functions, breathing, heartbeat, minor
physical abnormalities, dents, fasciculation, physical sensations,
pain, pins and needle feelings, perceived weakness, sleep disorders,
sensations of swallowing and choking and continuing new symptoms.

Then to amplify, escalate, add more to symptoms… Dr. Google.

Work with your doctors. Suggestion.... copy and print out your post
above and let the Neuro read it (to save his/her time) and you don't
forget anything. They are usually good speed readers.
 

Ponderosa

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Learn about ALS
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US
State
FL
City
Orlando
Hi, thanks for your reply! In general, I am not an anxious person about these things. I always go to the dr if something is wrong, but do not usually sensationalize my health issues. I'm good with my body and health and keep on top of things, but not obsessively. I'm so sorry if this reads overly anxious, this is honestly the first time I've ever had an onset of so many things at the same time and my drs have seemed as equally concerned. I listed everything happening, not to suggest *everything* is related, but to give an overall in case any of these details I don't think are related may be.

It's just been difficult to wait for a neuro appt for 4 months without answers or anything to work off of.
 
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