Perplexed, concerned and having to wait forever for my neurologist appointment

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Chadwilliams1

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Learn about ALS
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GA
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Jesup
Hey all,
I’m a 44 year old who has been very lucky with my health- never had an IV administered until very recently. About a month ago I started experiencing a random left eye twitch along with a strange feeling of being pulled down ( especially when on my phone- it affected both my hands and my head.) Strangely, at about the same time I developed a GERD problem and started having pain in my left arm. I visited a cardiologist who told me my heart was fine.

Shortly afterward, I started experiencing a weird sort of vertigo where I felt like I was being pushed hard to the left when I was walking or sometimes even sitting or lying still. About a week later my left trapezius muscle became randomly stiff and remains so- sometimes it will loosen a little but then it gets stiff again- this has been going on about a month. My right upper back muscles are a little stiff as well, but not as bad as my left one. It feels like my upper torso is being squeezed. I can still perform all tasks and raise my arms above my head and side to side with no problems, but there is lingering tightness and I feel uncomfortable when using a fork because of the tightness. .

I’ve started having aggravations with swallowing- sometimes I go from hypersalivation to dry mouth within a thirty minute period ( though I do have GERD and a cavity that has just started acting up). Just a few days ago I started noticing that my left leg is a little weaker than my right, though sometimes it’s better than others and the problem is always worse when I first wake up or have been sitting a while. Just two nights ago I experienced muscle twitches for the first time (in my upper back) that lasted about an hour. And for some odd reason my pinky finger tries to pull away from my other fingers sometimes and that really freaks me out. I’ve woken up and had to flex my hands to get my hands going a few times- this comes and goes and is a when I wake up thing.

My lower and mid back began hurting just a few days ago as well. I’ve had tingling and pins and needle feelings in my hands and arms and also some facial numbness ( had a very recent sinus infection, though). Recently had a brain MRI and all clear. I know that the digestion / tingling/ back pain aren’t ALS related but since the problem started at about the same time I decided to add it for proper context. All my blood tests are normal as well. I honestly don’t know what to think- anxiety has never been an issue for me, but I’m definitely concerned- any thoughts or ideas from people more knowledgeable than me would be really appreciated.
 
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What was the recent IV for?
Antibiotics and drugs used to treat GERD can have many side effects. So can inadequately-treated infections and GERD.
I take it you've been tested for COVID, esp. if you've been out and about getting care.
Obviously, you need to get your cavity treated or you could get an infection (or may already have one).

Treat what's in front of you, circle back to your recent prescribers, get healthy from your pre-existing issues, and I think you will feel better. You could have a video visit, at least, with a neuro, to track the vertigo/pins/needles.

Best,
Laurie
 
Thanks for the reply, Laurie. I’ve been tested for Covid and Lyme- both negative. Concerning Lyme, I’m an outdoorsy type and pulled a tick off of me about a month and a half ago. I’ve read that often times people who get tested for Lyme have false negatives, especially if they get tested early.

The come and go nature of my symptoms- and recent lower back pain/ pain in my arms/ tingling/ pins and needles- leads me to believe that spinal misalignment/ herniated disc/ pinched nerve in lower lumbar is a real possibility as well. I’ve never had panic issues before, but have had three panic attacks since all this started ( palpitations, sweating, etc. with no heart problems- I’ve had my heart thoroughly checked). And I’m a lifetime stomach sleeper who now is trying to learn to sleep on my back- not going well at all so far. I’ve been told that panic attacks can cause tight muscles well after they happen.... and the lack of sleep is no doubt compounding everything.

You mentioned something I haven’t considered- side effects from Gerd medication. Much of what I’m experiencing- the insane vertigo in particular- started after I began taking Prilosac. Maybe I should walk that back or try another med for the Gerd. The twitches- which I’ve only had once- could be caused from anxiety/ lack of sleep. I got the IV during the time I had my brain checked- when the sideways vertigo was at it’s worst.

Thanks again for your response- God bless all of y’all who help people with this tragic disease and all the ones who struggle so much.
 
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Thanks so much for taking the time to read and maybe provide insight into my strange recent issues. I’m 44 and have always been in good health- never been in a hospital prior to October of last year. I have also read the notes concerning what isn’t typical in ALS; however, my list of symptoms is so broad and all started around the same time, so listing them all is necessary for context.


I’m having a nightmare experience getting seen by a neurologist- I was given three different emergency referrals by ER doctors- my neurologist inexplicably ignored those and sent me back to primary care. Primary care did the same tests I’ve had done twenty or more times in two months and asked why I haven’t seen a neurologist. I bit back a scream and explained why- she gave another referral and an appointment was set up.... two months away.

Here’s my symptom progression ( and thanks so much for reading).
1) Early October-,twitching left eye . I didn’t think much of it. Very common and usually caused by harmless things.
2)) Same time period- consistent pain throughout left arm- not typical of ALS, I know
3) Same time period- Unrelenting indigestion begins- constant belching and nausea. I was basically eyeball diagnosed with GERD ( took only an abdominal ct which showed nothing).

This would be my main focus over the next two months, as other symptoms began to appear. I lost 25 pounds- and I am naturally a thin person. Was still very physically active though- I was walking on average about five miles a day.

4) Eye twitching continues..I still though meh.
5) Early November- began experiencing an odd vertigo where I felt like I was being pulled hard to the left while walking. Began experiencing facial numbness and on and off blurred vision. My left arm went numb on two occasions.

Not typical ALS.

I was admitted into the hospital to check for stroke, aneurysm, or potential MS ( I had some suspicion that MS was a real possibility). Brain MRI was clear, along with carotid artery test. Saw a neurologist very briefly but was not extensively tested besides checking my walking ability.

6) Was referred to a cardiologist- everything came back clear.
7) On the night after seeing the cardiologist, a tick fell off me as I got in the bathtub.

The rest of this story is the part that makes me very afraid. Less than four hours after the tick fell off me, my left upper trapezius tightened up- it became as hard as a rock. There was no sports injury or other underlying problem; it didn’t come on gradually- it happened suddenly over a ten second span. My body responded with its first panic attack. From this point forward my back and arms have never been the same and gotten increasingly bizarre.

8) The month of November is a blur of bizarre and increasingly terrifying symptoms. I am trained in exercise science and kept trying to release the trap- no luck. I develop my fist sinus infection- one that lasts for six weeks and has me pouring snot 24/7. This infection leads to a cellulitis infection in my face. The walking vertigo is replaced by peripheral vertigo with occasional nystagmus ( side to side-,not the spinning kind). I develop mixed IBS- some constipation, but more often diarrhea)
I am diagnosed with Costochondritis. There are periods of pain in my back, neck, joints, and arms. I pretty much stopped sleeping because my body gets randomly uncomfortable and there are so many symptoms developing that it starts taking a toll on my mind... which infuriates me because I have never had an anxiety problem.

9) Sometime in early December, the trapezius thaws, but my back does *not* return to normal.
A strange and terrifying light/ heavy period begins. When I stand up the left side of my body may feel like it weighs 150 pounds while the right feels like it weighs 20 pounds. Or sometimes the right is the heavy side. While walking it feels like the muscles in my back are constantly moving around. There is no weakness or spasticity at this time only the knowledge that this is very unnatural.
I started feeling terrorized by my own body and had no idea what to expect each time I stood up.

I frantically try to set up primary care and specialists appointments, but the Covid crisis makes the timeframe very slow. So I visit the ER on many occasions- Spinal MRI shows mild scoliosis and some nerve compression, but doctor gives me a blank look and refers me to neuro after hearing my symptoms. Some neck arthritis is found, but it doesn’t sound serious.

10) My legs begin to behave randomly insane- When I first wake up, I have to cling to the walls because they are weak. As I get going they improve, but they never feel normal. Sometimes they are really heavy, sometimes they are really light. On two occasions, they go “ spaghetti” and shake. My arms are the same- sometimes super heavy, sometimes light as a feather. My back, arms, and legs all start randomly changing their mind as I am walking. I am mortified and keep trying to get more detailed testing done- doctors just look at me and shake their head. I have gone from social person to a virtual shut it. Still walking but the walks are no longer a source of stress relief; they are now terrifying. No weakness or spasticity, just the feeling that everything is out of balance.

11) I desperately decide to visit a chiropractor. Afterwards, my legs go back to normal. No more light/ heavy. But my back remains a big problem. I start having frustrating problems making turns- it feels like my back doesn’t want to turn with the rest of me, like it freezes while the rest of me tries to turn. I walk fine, but can’t stand in one place long because my back is constantly changing its mind and I get super uncomfortable.

12) I start having constant internal tremors- at first I think it’s my heart, but soon realize it’s actually my body vibrating. I start experiencing myopclonic jerks at night. I develop restless leg syndrome and plantar fasciitis.

13) Finally, my appointment with primary care comes- she does yet another CBC and of course it’s fine. I ask for full thyroid panel, along with full vitamin panel and a toxic metals test. She looks at me like I’m nuts and says there is no need. She recommends I speak with the anxiety counselor; I bite back a scream and leave. I do manage to talk her into prescribing Doxycycline for potential tick borne illnesses. She only gives me a one week prescription. This is early March,

14) I start taking the Doxycycline. I am no longer walking my five miles; instead I walk short distances four or five times a day. Maybe one mile or so. My back is always horribly and unnaturally uncomfortable and turns terrify me. I am walking much slower now.

15). On the third day of taking Doxycycline, I wake up with weakness in both arms. It would not qualify as clinical weakness, but from my own tests I would say that they are both about 50% of normal strength. They are easily fatigued, even by typing on my IPhone. Traps on both sides are super tight. Pecs are also tight.

16) Current- My traps and pecs go back and forth between two extremes- a) super tight (I actually have energy but am really uncomfortable during this period) and b) Soft and heavy- this one is actually worse because I have no energy when this happens and even my legs feel heavy. My back always feels super heavy now and there is a pulling down sensation at the top of my spine even when I lie down. And the feeling that everything in my back is constantly moving around makes standing or even sitting up a nightmare.

17) I have hypersalivation, although I still do burp a lot. 18) Still have the eye twitch, and some twitching in my left leg.

18) I went to Savannah ER a few days ago and luckily a neurologist was in the ER. He did a very brief exam- checked all my reflexes and checked my upper back for muscle wasting. None was found. I begged for an EMG, but he said it would better to wait and get it from my regular neurologist on April 16th. Many new blood tests were run- my only abnormalities are slightly raised creatine alkanase, very high folic acid levels, and low lymphocytes.

Thanks for reading this super long post I understand that you aren’t doctors, but I am both terrified and confounded at what had happened since October. Everything started with my back- is what I have described related to my back a reason to think ALS is the problem? Thanks so much for reading and giving me some ideas. What in the world is going on with me?
 
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I have read it but appreciate you posting it anyway.As for consulting medical professionals, 30 visits in the last three months. None in 44 years before that. I’m honestly just checking in several places for similar experiences. I was most interested in the views of people whosr issues started in the back- the progression and the light/ heavy aspect or the feeling that muscles are actually shifting and flopping around as you walk followed eventually by the feeling that those same muscles seem to be dying. But I totally hear you. All the best to you and everyone else.
 
Wow Chad what a frightening time you have had.
I can totally say however that not a thing in your experience would suggest ALS to us, not even a little bit.
I truly hope they can figure everything out for you and you get back to full health soon.
 
PALS don't feel light/heavy, or muscles flopping and feeling like they are dying. they wake up one day and realise they can't do something they could the day before and yet feel completely normal. Again I hope you find answers soon, it sounds awful.
 
If you really had Lyme or another tick-borne illness, at least 3 weeks of doxy would normally be recommended. Were you tested?

I would stay away from random chiros, esp. with costochondritis. Random ER visits for unclear chronic issues are generally not productive, either.

If you actually have RLS, of course, there are drugs for that.

I would try to stay with an internist who isn't afraid of zebras, collate your test results/exams in a notebook, and discuss them in terms of what has been ruled out and what remains to research, recognizing that there may be multiple factors at play.

Like the others you have heard from, I see no reason to worry about ALS. But I understand that what you are going through is frightening.

Best,
Laurie
 
Hey everyone,
I posted a pretty long set of symptoms that have me confounded and afraid the other day. I won’t repeat all of it- I’ve had a flood of symptoms that point in different directions since October. My neurologist appointment is Friday, thank God. I’m asking people on different forums if they have experienced the following presentation and am most interested in spasticity/ rigidity/ tightness
1) First relevant symptom- A twitching left eye that I didn’t think much of.
2) A left upper trapezius that * suddenly* tightened and stayed tight for about a month. My back has never gone back to homeostasis. Is this type of sudden first tightness typical?
3) For the next four months I experienced no tightness or spasticity but my back went through a series of changes that got weirder and weirder.
4) Finally, I woke up with both arms at about 50% capacity, but no clinical weakness.
5) And this is where I’m really looking for answers on several different forums- On the day after I woke up with weak arms, major tightness/spasticity/ rigidity ( would need someone qualified to say which) started. Both back muscles and both pelvic muscles all suddenly went random tight/ loose. . They go back and forth between being super tight and loose and heavy- my back feels like a tangled mess. The muscles just go back and forth all day long . It’s like being caught in a web sometimes and I can stand and walk but am so uncomfortable and every second I’m up my back is on my mind.. I also have a spell every day that is really awful and seems to last a few hours- feels like I weigh 600 pounds during this period. Would it be typical for all that spasticity to come on at once? And do the muscles go back and forth like this in ALS? I’ve had lots of other stuff pointing in multiple directions and have left them out because right now the back and forth muscles are my major presenting symptoms, along with on and off blurred vision and some calf twitching and pretty constant internal tremors.
Thanks for your time- I will be donating soon to y’all and really appreciate your time . And I won’t be posting 20 more threads. It’s just that I’ve come to believe that my upper spine and the muscles there are the key to my diagnosis. I really hate the randomness of whatever I’m experiencing. Hopefully I’ll find out Friday.
 
It sounds like you will be seeing a medical practitioner on Friday. Hopefully you will have some answers then.

I’ve had lots of other stuff pointing in multiple directions and have left them out because right now the back and forth muscles are my major presenting symptoms, along with on and off blurred vision and some calf twitching and pretty constant internal tremors.

While you think it's helpful here to leave some things out, what this tells the folk reading this is that the picture you are painting is not complete and includes much that is not ALS, as Laurie replied to you before. Doctors look at the whole picture and would be able to decide which symptoms are pertinent and which may not be while also examining you for clinical signs of spasticity, etc. A note- spasticity is not weird tightness, it is a pattern of abnormal muscular/reflexive responses- and only a doctor can assess this.

I know it's hard to wait, but anything is just speculation right now till you get a doctor to actually look at you and provide answers to the questions you have. I suggest you write a list of the things you'd like to know and make sure to address them with your doctor. I really hope you get some answers from your doctor- all the best.
 
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