Nervous due to some 'classic' ALS symptoms

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Justadad72

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Hello All,

I've read the guidelines posts but I'm quite nervous and awaiting a neurology appointment, so I thought I'd run my symptoms past the forum. I will happily admit to a mix of motor and sensory symptoms and sensory symptoms, as the forums suggests point away from ALS.

I dislocated my right shoulder in Dec 2019 - but recovered well and was pain free by the end of April 2020.

At the end of May 2020 I had an unusual experience with my voice - on a few occasions it had 'cracked' when speaking - just a spilt second gap where there was nothing coming out. I called my GP and he told me that sometimes voice problems are caused by lung issues, so I was sent for an x-ray the day after. One hour after getting home after the x-ray my GP called me and told me I had a shadow on my lung and a slightly diverted trachea. This starts a 14 day process in the UK as cancer is the suspect. Unfortunately, due to COVID and someone messing up my CT scan appointment, this took 5 weeks.

I had the scan in early July and was awaiting the results from a respiratory consultant when I noticed a weakness in my right shoulder when I came to close a high window. I didn't think that much about it, it was the shoulder I had injured and I thought I needed to restart the rehab exercises the physio gave me as it hadn't healed as well as I thought.

I restarted the exercises and noticed that my left tricep was wobbling hard after one particular exercise - it had never felt or acted like that when I had done them previously. And now I had noticed that certain movements and motions were showing a weakness in my triceps and shoulders on both sides. These were just simple things, like wiping down a table or lifting the lid on the roofbox on my car. I thought that maybe this was all down to bad posture or poor sleeping positions so didn't think too much more. I was given the all clear in mid July regarding the lungs.

Since then:

August: weakness in both shoulders, extending to triceps. A pain in my groin/testicle when I walked fast, GP examined me - no lumps. Tinnitus and hyperacusis.

September: Weird episodes where the tinnitus would increase and I'd get tingle in left hand side my face, sometimes down into my shoulders and feel highly agitated. I looked this up on the NHS website and it indicated a TIA (mini stroke) and to call my GP immediately, he didn't think it was a TIA, but couldn't explain it. I was also having some vision issues - 'busy' visual environments like fallen leaves on grass, supermarket aisles, would seem blurry and again make me a bit anxious. I had my eyes tested, no problems, but given a weak prescription for reading glasses. Thankfully the groin pain disappeared.

Mid September - pain in lower back and hips that was waking me up at night, followed by twitching in the calfs and sometimes thighs. I had also had a issue where my right hip cracked when I was getting out of the car and the left did the same about ten days after. The shoulders and arms felt weaker doing simple things that never caused issues previously and I noticed when I was stood standing still especially to use the toilet my hips would sway back and for slightly - I'd have to clench my butt tight to stop the swaying. I was also feeling a bit light-headed on occasion and slightly spaced out - I thought this was anxiety based. My feet were also starting to ache, especially when just getting out of bed - I thought it was plantar fascitis.

October - Nothing seemed to be improving, I'd also developed a jaw tremor, just like your teeth chatter when it's cold, but a bit more subtle - this was constant 24/7. So I called the GP and he did blood tests, found low Vit D - was put on a course of high-strength Vit D tablets. This seemed to explain a lot of the muscle and pain issues I'd been experiencing. The hip swaying stopped about a week after taking the tablets and I slowed down my exercise a little and after about a month I felt my tinntus had improved a little which was pleasing and for a period of time the muscle twitching eased. My gait when walking though seemed a bit unusual, like my feet weren't moving in a straight line forward and splaying to the left and right a little, and when I walked fast my thighs felt very light and sometimes I noticed a sensation like a cotton thread was caught through the middle of the thigh. My shoulders were also now aching a few hours after the end of a walk, which seemed really weird and I had a period of three or four days where my bladder seemed to fill quickly and I would be running to the toilet in case I had an accident.

November - the Vit D was extended by another 6 weeks, I mentioned the twitching had eased over the past few days and the GP didn't seem alarmed, she wanted me to finish the course and have blood tests in the new year to check the levels. I'd put on a lot of weight in the previous month (about 12lbs) I'd been pigging out a bit and not walking as much, so I vowed to get the weight back under control (I'd been dieting all year, so this wasn't good). By the end of November my arms were feeling weaker than ever - especially when lifting them up or extending them out and I noticed my 'pinch' movement on my left hand feeling a but different and some hand pain in my right hand between the knuckle of my ring and index finger. By the end of the month I noticed that when walking I'd sometimes get a sharp pain just at the front of my hip and the top of my groin, especially when walking downhill. My digestion was also causing me issues - I was getting full really quickly during eating and I had a lot of burping and reflux, my wife and I were lying on the bed laughing at all the noises my tummy was making it was so loud.

December - I had my Vit D tested privately and it was now well within normal levels, but I was feeling worse in every way - weaker and spaced out. I rang the GP and she had me in, did some strength testing and reflexes, everything seemed normal, but she couldn't explain my symptoms, took more bloods and asked for a stool sample and made an appointment to talk to me in the New Year. I was also having some really intense mid back pain and also pain in the bones of my feet. The weight I had put on I managed to lose easily enough and a little bit extra.

On Christmas Eve I went for a walk, the gait problem had largely gone but as I turned a corner to head back home I had the most unusual sensation that my legs had become disconnected at the lower back - I could feel my feet hit the floor, but my legs felt they were going in one direction and my body in another. I noticed some soreness in the lower back too and a bit of a tingle around my butt, I'd had a tingle in the butt on occasions during the summer but hadn't paid it much attention. I ignored it as it was Christmas eve, but on the evening of the 26th looked it up - "Spinal Stenosis". I panicked and went to A&E the morning after - they were really good, put me though some physical tests/bloods and told me that I didn't have 'red flag' stenosis symptoms. I didn't want to wait until New Year to speak my GP so I used my wife's work healthcare scheme to talk to a Neurosurgeon.

The Neurosurgeon wanted a full head and spine MRI done asap. I had them done last week and she called me a few days after - all clear. A little bit of wear and tear around the cervical spine, some slightly impinged nerve roots, no lesions, but nothing she'd ever have to be involved with from a surgical perspective. She told me she was going to refer me to a Neurologist and that her letter would mention some areas for him to concentrate on - she said I 'don't want you to worry when you see those areas mentioned on the letter' and that she would ask for a nerve conduction test.

Over the past month, my weight has been static, but I've noticed my thighs aren't quite as bulky as they were a month ago and the new jeans my wife got me just before Christmas already feel too big around the leg and butt. Both shoulders and hips feel slimmer and both wrists and shoulders on left and right have got very clicky - which is new. They feel as if they aren't being cradled by as much muscle as they used to be. And the groin and testicle pain on walking has reappeared. I also have an intolerance to exercise in my arms and shoulders - I did 20 push-ups leaning against the wall - a simple exercise I could do lots of in the Spring for my shoulder rehab, but I was left feeling shattered - I sat on the sofa, feeling I was going to throw up, my abs were aching and I felt I'd been in the gym for hours.

I still have twitches, but now I tend to get them all over, legs, abs, ribs, arms, shoulders and neck. I've also started to get some myoclonic jerks when falling asleep, but also when I'm just at rest in the daytime. My arms ache all the time from the simplest things - I've not failed at anything thankfully and I don't want to but I'm very scared of it being ALS.

I'll stop now I, I didn't realise I'd written so much.

Thank you kindly.

Just some brief additional info.

been getting some mild foot cramps on underside of both feet, following the line of the big toe to the heel and I’ve noticed my tongue feeling weak when used on the left. If say I’m trying to get some food dislodged on my left molars.
 

lgelb

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I have no concerns as regards ALS but would ask your GP if she is satisfied that your blood work ruled out an infection (and were you tested for Covid?) and ask your wife if you snore a lot or gasp/stop breathing during sleep. I would also reconsider your diet and hydration overall.

Best,
Laurie
 

Justadad72

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Laurie,

thank you for your reply. Yes my bloods have all been good and I don’t believe I’ve had COVID, though I’d have to have an antibody test to prove.

I am a snorer and have wondered about sleep apnea in the past, I may mention it to the neurologist when I get my appointment.

best wishes.
 

Justadad72

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I just wanted to write that over the past couple of days I have been examined by a very experienced Consultant Neurologist who told me I was fine. This morning I met with an even more experienced Consultant Neurophysiologist who conducted an NCS/EMG. Apart from some mild carpal tunnel syndrome he found nothing abnormal. He words to me were ‘Don’t worry, I don’t miss MND (ALS)’ and I believe him.

His other piece of advice was ‘stay off the internet’.

I’ll delete this account in a day or so, but to the other people who find themselves in a situation like me, I would advise you work on your anxiety and mental health.

To all those users who have been diagnosed, I wish you all the very, very, best.
 

Nikki J

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Thank you for sharing.

congratulations. Have a long and happy life
 

Justadad72

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Nikki,

users don’t appear to have the ability to delete the account they have set up, would you be so kind as to do this for me?

many thanks.
 

Nikki J

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Sorry I can’t either. I can close your thread which means it will no longer be answerable and will be buried soon. I can also ban your account. That would make your profile hard to find and you would no longer be able to post. Let me know if you want me to do either or both
 
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