My sad story about continuation of twitches

[Lana]

Firstly, I apologize to several of the advanced members who I PMed and they were so kind and so compassionate to answer to me and tried to instill some reason in me. Needless to say, although I highly appreciate it, nothing helps once you are in the grip of some nasty neurological disease fear. I need to share what follows and whoever can help, I am grateful.
My eyelid twitch that started a month ago stopped by itself. Other twitches continue, mainly left leg, but also right hand, right leg, neck, and sometimes face, which is the worst to bear. It is almost my lip and nose area , if not twitching, constantly tingling or something, hard to put it in words. My fear is through the roof. I also feel something like internal vibrations, my right hand shakes a little, but it also hurts a lot, depending on the posture of the hand. That may be due to mechanical injury from several months ago, when I dropped something heavy on it.
I saw my GP/Internist doctor who has known me for almost 20 years (17 or 18), and , as I said in one of my earlier post, “politely dismissed me”. He did not give me a clinical neuro exam, saying it is not needed. He is a very good doctor, but now I am afraid , because he knows my history, that he dismissed me because I claim there is ALWAYS something wrong with me, and maybe he is just tired of me. So I sent him a message via portal, telling him that my other twitches continued, and whether he thinks I do need any tests or not; this morning I got a notification that he replied, but now I am scared to open and read.
I had brain MRI and EMG on both of my arms exactly 2 years ago, and that neurologist diagnosed me with bi-lateral carpal tunnel syndrome. I have actually had it for years on and off, and this EMG & Nerve study just confirmed it.
But I am still petrified. I cannot stop thinking about twitches, and I also have these jerking movements now , when I am falling asleep. I check if I have weakness, but I am not young, so obviously I cannot do everything - I can walk on my toes, on my heels, pick up stuff with both hands normally, even only with my index and thumb only. But, I have problems jumping UP the stairs.
If you can give me courage to at least open my doctor’s message. Thank you for reading, and it is a blessing, but also a privilege, being able to post on this Forum.

[Fishmanpa]

Firstly, I apologize to several of the advanced members who I PMed and they were so kind and so compassionate to answer to me and tried to instill some reason in me. Needless to say, although I highly appreciate it, nothing helps once you are in the grip of some nasty neurological disease fear.

That hold true for just about everyone here. Words on a screen cannot instill the inner fortitude needed to battle the dragon.

FMP

[sel123]

I can understand and relate to what you are saying :( I'm sure I'm not saying anything new, but right now you are letting fear and anxiety win... the only way to move on from this, is to try to take back some of the control. Opening the drs note is a good first step!!!

[kyllikki]

Dear Lana,

I'm not sure if it's a good or bad idea to point you at the ALS/MND sub-forum on this website, where you find many, many, many other twitchers. I am one of them now, too. My twitching started off exactly like yours: around my eyes, sometimes lasting for days. I was able to ignore it because I know that eye twitching is literally meaningless. But then a funny thing happened. I have a very high stress life but a few months ago during an even higher than normal period of stress (which I am still in!) I saw in article titles something like "woman received devastating diagnosis after 6 months of medical appointments" and like a total idiot, I read the article. It was about a 70 year old women who was diagnosed with a certain terrible neurological disease, and the article contained a word I had never seen before: "fasiculations." So I googled this new word. Within two weeks, guess what happened? That's right. I started to twitch.

Now please note, even before this, I was having weird symptoms -- headaches above one eye and at the base of my neck; perception that I was holding my head oddly/tilting it; double vision at the top corners of my visual field; pulsatile tinnitus and other tinnitus that sounded like a bass guitar in one ear; feeling like my bite was off or my speech was weird; poor memory and difficulty expressing myself out loud, at times. I was also physically weak/stiff from lack of exercise -- my legs, my arms, my core, everywhere -- but I chalked that up to pandemic rot.
I had been to an opthomologist and an ENT and gotten a brain MRI, an endoscopy, complete hearing testing, and a bunch of vision testing, all of which was 100% NORMAL, except for the fact that I evidently have glaucoma. The ENT felt that the tinnitus was nothing, and the Optho felt astigmatism + glaucoma accounted for the eye and headache stuff, and the rest, well, my GP told me to get outdoors and move around more.

But after reading that blasted article and getting the twitches, I started to think -- is my ankle weak? My wrist and hand? My jaw? I started testing things. The twitching got worse. My legs and hands started to cramp. I was now in pain, still twitching, and ABSOLUTELY TERRIFIED now, too. So I saw a neurologist. She did a bunch of tests. Twice looked me in the eyes and said "you do not have any weakness" and "I do not think you have [insert terrible neurological disease here.]" She sent me for more MRIs, which revealed I have a bunch of spine problems. I'm supposed to discuss that with her again soon. Briefly, my twitching improved greatly!!

But you know what? I'm still twitching, still terrified. It's a terrible, terrible hole, and it persists even though rational evaluation should be enough to tell me I am not exhibiting any obvious hallmark symptoms of the awful disease I fear.

Meanwhile, I've started seeing a MH professional and got a book on HA which I am committed to working through.

Fishmanpa who posted above likes to tell us all that we need to get a plan, and take the fight to the HA dragon, because the dragon does not go quietly. I think he's absolutely right. It's terribly hard, but it's the only way out. I can't claim I have figured it out yet because obviously I have not. But I can tell you that there are easily hundreds of people in exactly the same boat as you and me -- petrified that a mortal threat is hanging over them. And we're all right, there IS at least thing seriously wrong with us! It's just that it's name is Health Anxiety, not [terrible neurological disorder.]

Wishing you every bit of luck.

[Lana]

Guys, thank you very much for taking time to read my post, and reply.

The only thing is, I wish that Kuyllikki did NOT mention the story in the newspapers. And please, do not even explain, because I do not want to know if this woman from the story had twitching as her first symptom , or that the word was simply somewhere in the report mentioned- I cannot know that, it would be too dangerous for me, so please, Kuyllikki, respect my fear and do not tell me. I certainly appreciate your thorough response, and I find comfort in the fact that many, many of us twitch, due to anxiety. I wish everyone the best of health, and again, whoever reads and bothers to respond, it is really wonderful help. Just to add: did not open my doctor's email yet.

[pulisa]

Lana..Your doctor knows that you have entrenched HA. Do you really think that he would send you distressing news via email? Email?

[Lana]

Pulisa, thank you for talking to me.

No, I do not think he would do it through email. He would have called me, as he did several times when it was needed, throughout the years. I am though worried that he may say (even if the reason is the fact that he had had it with me!): Let's send you to neurologist. I do not want that. I just want him to tell me I am fine, I just want the twitches to stop, I just want not to feel like this...I know, this all sounds ridiculous, and nobody can help me with unrealistic wishes. I know I am burden, to myself, and to others, including my husband...But, I have nowhere to share these thoughts but here. I feel home on the Forum, strangely as it may sound. Because, people here went through so many similar experiences.

[pulisa]

The ALS/MND subforum on here is full of people fearful of their benign twitching. To be honest it's going to be full of "information" which will trigger you because HAers are thorough and meticulous in their "research" and no matter how reassuring the post intends to be you will always find the "but what if" element to the point being expressed. That's why I think looking at these posts won't do you any favours.

Why not see what your doctor has said? He was politely dismissive before. If he were to get tough with you would you appreciate it as him needing to challenge your HA? Or would you be angry and se it as him not understanding how HA works?

[pulisa]

Pulisa, thank you for talking to me.

No, I do not think he would do it through email. He would have called me, as he did several times when it was needed, throughout the years. I am though worried that he may say (even if the reason is the fact that he had had it with me!): Let's send you to neurologist. I do not want that. I just want him to tell me I am fine, I just want the twitches to stop, I just want not to feel like this...I know, this all sounds ridiculous, and nobody can help me with unrealistic wishes. I know I am burden, to myself, and to others, including my husband...But, I have nowhere to share these thoughts but here. I feel home on the Forum, strangely as it may sound. Because, people here went through so many similar experiences.

You only need to be referred to a neurologist if there is a clinical need and NOT for reassurance. ASk him to only refer you anywhere if there is a clinical need. That applies to all your health issues. It's a powerful tool against HA and unnecessary tests.

[Lana]

I swear to God, I want him to be tough, I think that would shake me out of this .

I will post what he says as soon as I open it. As to the Subforum, I think you are totally right, although, I did read it even before this twitching, so unfortunately, I knew about "the illness". That is probably why I am where I am now. I am not going to that subforum any longer. I also do not research, or google it, what I read here and there is more than enough. I wish I knew nothing about it.