Old 11-02-2017, 11:04 AM #1 (permalink)
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Default Some help required

Dear all

I'm in a really tough spot and have been for about 3 months. Please can I run my symptoms by you to see if anyone can relate to my condition and progress.

I have felt a bit off since the beginning of the year like a growing fatigue, but I put this down to having a 1 year old (now nearly 2). I went to the docs however as something wasn't quite right. I had low neutrophils, which after several blood tests the doc decided was just normal for me.

I then had a funny turn while returning back from a holiday, felt like a mini stroke, which then happened a few more times in the following months. Went to the docs, again they weren't sure but said it may have been a transient ischemic attack. I am 32 years old by the way.

Cone June, and in the swimming pool I felt breathless, not out of breath, just like there wasn't any air. Still not bothering about all of the above at this stage.

Then In mid July I begin to have this weird internal tremor when sitting st my desk st work or during a posture. Throughout my body. Sometimes visible. When I move my fingers as well they then take an age to relax, twitching about all over the place. I tried to exercise this out over the following weeks and doc prescribed me with propranalol. However symptoms got worse. At this stage I also noticed the veins on my hands were alot more prominent than they had been before. At this stage I am thinking weird heart issue.

I then get out the pool one day and I have another funny turn, then develop these mad twitches. I notice that I am looking alot thinner around my chest area bizarrely. The funny turns are caused by shortness of breath. I weigh myself and in the space of 8 weeks o have lost nearly one stone of weight. Now I am worried.

Over the next month I presented to a&e three times with exercise induced breathing issues. During this period I developed first calf twitches which then progressed body wide. I was referred to neurology who through the book at me. Ever scan and blood test imaginable plus lumbar puncture. I passed with ease neurologi so strength tests. I had an NCV which was normal and an EMG tested 4 limbs, one spinal muscle and my stomach. Neurophysio didn't want to test my neck or ribs despite me asking. She noted 'one chronic neurogenic unit' I think in my left thumb muscle but didn't think it was important and deemed the test normal. At this stage no clinical weakness. Neuro noted possible atrophy in right scapula and on right hand but second neurologist wrote this off.

Fast forward two months and i notice the muscle loss continuing in my hands and feet, my right pectoral, neck and and around my knees. To be honest with you, it's relentless and is starting to interfere with my day to day. Drilling, storing the te, lifting The kettle or carrying my young son up our stairs are now exceptionally tough. My face has also lost a ton of muscle and feels stiff, it also sometimes feels like it is crawling. I was waking up for a period of 3 weeks with dead arms but they are permanently stiff Now, not dead, different feeling, tough to explain. There are big holes above my elbows now also. The twitching has taken on a new level, my breathing has gotten worse and my swallowing is poor. I attribute this to my neck and chest wasting.

Due to my muscle loss and breathing issues exercise has become very tough, I try to push through it but when I do the following two days are a write off. No matter how I exercise I cannot rebuild the muscle I have lost, in fact i feel it exacerbates it. I have managed to put back on half a stone from s calorie rich diet and protein shake but it is not building the areas I have lost muscle. I have lost 8 cm in my calves. My grip in my dominant hand has now weakened and stiffened, hands and wrists look skeletal.
I was extremely fit and athletic before all this kicked off, the changes in my body have been unbelievable. I'm terrified this is ALS.

Can anyone offer any guidance or support, or alternative causes?

I'm happy to provide pictures of atrophied areas if interested. I have been kind of keeping a photo diary of progress.

I have had no help from the neurologists I saw, after first emg they kind of wrote me off with something called a functional neurological disorder. However the twitching and progressive muscle loss don't fit. I'm really lost.

Last edited by lgelb : 11-02-2017 at 06:36 PM Reason: paras
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Old 11-02-2017, 11:11 AM #2 (permalink)
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Default Re: Some help required

I should add to this. I have a strange electrical buzzing feeling in my body, for last four weeks I have this horrible tinnitus in my ear when lying down (possibly due to neck muscle weakness or weakness of face/head muscles?). My tongue is twitching alot, I can't feel it but I can see it. It's almost permanent but isn't the wormy type I see on YouTube as example of als tongue twitching, more weird single or double twitches. My breathing is worse when lying down, outside or when holding my son. The twitching is absolutely everywhere now.
Please if you could help me out, that would be greatly appreciated. I'm at the end of my wit and have been off work now for six weeks due to the weakness.
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Old 11-02-2017, 11:14 AM #3 (permalink)
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Default Re: Some help required

Pps this isn't some anxiety driven madness. I'm a very happy bloke in normal corcumstance. I am very attuned to my body being a frequent gym goer and athlete. The changes have been incredible and now to the stage of being debilitating. I'm pretty terrified. Lots of symptoms I know, I'd greatly appreciate guidance.
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Old 11-02-2017, 01:11 PM #4 (permalink)
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Default Re: Some help required

Hello-

If you've been to the neurologist already, they now possess a baseline with which to compare to your current symptoms. While I don't think ALS is on the list of things to look at, it might be a good idea to return to your doctor to see if there's a difference between your last exam and now.

You have posted a huge chunk of text, and followed up with two other posts in a short period of time. It's clear you are very worried. I don't think it's appropriate to completely write off anxiety. Regardless of what your physical symptoms add up to, you need to get help with controlling anxiety as well. The reason being that anxiety provides a signal boost to physical symptoms and can muddy the water for a diagnosis. This is not a dismissal of your symptoms, but advice based on experience.
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Old 11-02-2017, 02:37 PM #5 (permalink)
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Default Re: Some help required

Hi,
Yeah my symptoms are now making me anxious given I've went a few months hoping it would go away and all I have is a relentless, debilitating progression. We are naturally worried given I have a wee bit and a wife half way through a pregnancy. I wanted to give the full story.
Long string of text is because I am on my mobile phone, which I struggle with now, apologies for that.
Problem is my neuro has, in his words, drawn a line under it and fobbed me off with the END diagnosis. He won't return any of my father's or my calls. I saw a second neuro in same hospital and passed her strength tests. Hey 22 month old could have passed them. When I tried to show her my wasted areas, she just said the first neuro had thought they were natural muscle contours. I couldn't believe it. So I am stuck now until something stops working.
Does my symptom set and progression sound like an ALS possibility? I certainly reads so on the net and alot of other things have already been rules out by the battery of tests I received. But wanted to ask the kind people of this board.
I ask humbly that we could perhaps get a few responses to this and I'll be delighted to answer any other questions. I'm really looking for a ray of hope.
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Old 11-02-2017, 03:16 PM #6 (permalink)
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Default Re: Some help required

As you know if you read the sticky twitching is so common as to be meaningless.

Buzzing we hear a lot - from the worried. I don't know what it is but it is not an ALS symptom

No tinnitus is not a sign of weakness

Those tests a 22 mo old can do? We can't. I feel like I can but when the doctor says push against my hand nothing happens.

Your EMG was normal.

If the neuro won't talk to you go to your gp and see what they think
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Old 11-02-2017, 03:28 PM #7 (permalink)
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Default Re: Some help required

Thanks Nikki, wife and I going to see the GP tomorrow. However he is basically relying on the neuro, I'm taking my wife along to strongarm him.
If it was twitching alone I wouldn't be bothered, but the body wide muscle loss is really scary.
Thanks for your support, I'll keep in touch with my progress if that's all the same and would greatly appreciate anyone else's input.
Best
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Old 11-02-2017, 03:52 PM #8 (permalink)
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Default Re: Some help required

The EMG is the gold standard diagnostic tool for MND's. If you don't trust the results get a second opinion.

I have not heard of any ALS/PLS people that have a normal EMG. That being said, it sounds like fear and anxiety are magnifying things. You owe it to yourself to go back to a neurologist and see what is happening with you.

This forum is not meant to diagnose MND, nor should you trust anyone here to confirm your fears.
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Old 11-02-2017, 04:54 PM #9 (permalink)
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Default Re: Some help required

Yes I'm not looking for a diagnosis i know that wouldn't be right. I was just wondering if any other had had similar experiences.
Understood on the EMG, I had experienced some muscle loss at that time but certainly didn't feel weakness in a particular area except my breathing. It felt more like a system weakness, tough to explain. Just wrong, destabilised. Now it is actual weakness where I'm struggling to lift a heavy pot, a kettle or drill a hole in the wall. That accompanied by this body wide muscle loss is really putting me under some pressure.
Appreciate the responses thus far.
I intend to go back to GP tomorrow, probably will be annoyed to see me but I'm not going to take no for an answer.
I got tested for Lyme at my own request, first test was positive then western blot negative. Worth pursuing this further?
My thyroid bloods also came back normal, but I understand there are private labs specialising in thyroid and parathyroid that can perhaps see subclinical issues.
As you can probably tell I am at the end of my wit with this, the progressive muscle loss, incessant twitching and now weakness point in only one direction. I've done extensive research, hencecin my desperation I've come to the board for opinions.
All help and comments greatly appreciated.
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Old 11-02-2017, 05:06 PM #10 (permalink)
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Default Re: Some help required

Studavey, following is the question from what you wrote,

"I intend to go back to GP tomorrow, probably will be annoyed to see me but I'm not going to take no for an answer."

What... that you do have ALS?

Then you wrote,

"I've done extensive research,"

Your doctors have studied tremendously more to get their degrees than your research.
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Old 11-02-2017, 06:54 PM #11 (permalink)
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Default Re: Some help required

Clearwater, I meant I'm not going to be palmed off by the doctor with a diagnosis of functional neurological disorder. I am losing muscle - not a symptom of FND. I need further investigation to get to the bottom of this, obviously with my symptoms ALS or MND as we call it is top of my fear list.
On neurological expertise - . We do not have ALS specialist centres or anything like that In the UK and no neurologists in my area with a specialty in MND. All of the neurologists are generalist. I'm not trying to belittle them but to write me off with FND instead of instead of doing proper follow up is really shitty and lo and behold, I've had significant muscle wasting in the meantime.
I'm really worried for myself and my family, not ashamed to say that. Hoping others on the forum could help me figure this out or give me a steer is all.
Best,
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Old 11-02-2017, 07:24 PM #12 (permalink)
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Default Re: Some help required

Hi I did reply Clearwater but must have messed up posting it.
When I talked about my GP and not taking no for an answer, I meant to further investigation given this functional neurological disorder diagnosis is nonsense, given my progressive muscle loss which is not a symptom.
On neurologists, I actually disagree on this one. We don't have a regional ALS specialist centres in the UK. In my NHS Trust area, there is not a single neurologist specialising in ALS, which we just term MND. I have researched an absolute ton and everything leads to MNDhave come to the board here to see if anyone can relate to my symptoms.
Hope this clarifies, I'm really worried about it all as is the family.
I really appreciate people respondjngcto this thus far, would be good to hear from some others if they are willing to give me a little time.
Many thanks
S
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Old 11-02-2017, 08:04 PM #13 (permalink)
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Default Re: Some help required

Hello-

This isn't really the place to be to conduct a survey from every member about your symptoms. The advice you've been provided so far is pretty spot on. Unfortunately, the people here can not help you diagnose yourself or replace the services of a doctor. Your response to each person taking time to answer you so far is perilously close to "Thanks for the reply. I'll wait to hear from someone else. Next."

While you have stated you've been to a neurologist, there's a possibility your symptoms are not neurological at all, but something else. This forum is actually in place to help those who have been diagnosed with ALS or other MND, or for the people who care for them. This subsection (DIHALS), while trying to be helpful to those who are seeking answers, is not the primary focus. Medical attention is absolutely the only way to get a diagnosis. This is not a place to compare symptoms or solicit lots of attention once you've been provided several responses and advised to continue seeking medical care.
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Old 11-02-2017, 08:08 PM #14 (permalink)
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Default Re: Some help required

Studavey, you have a clean EMG. You have been seen by two Neurologists.

As yu wrote,

"Problem is my neuro has, in his words, drawn a line under it and fobbed me off with the END diagnosis. He won't return any of my father's or my calls. I saw a second neuro in same hospital and passed her strength tests. Hey 22 month old could have passed them. When I tried to show her my wasted areas, she just said the first neuro had thought they were natural muscle contours. I couldn't believe it"

Key words... "I couldn't believe it."

You need to really try...

"I was referred to neurology who through the book at me. Every scan and blood test imaginable plus lumbar puncture. I passed with ease neurology so strength tests. I had an NCV which was normal and an EMG tested 4 limbs, one spinal muscle and my stomach"

None of us here can top that.

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Old 11-08-2017, 05:21 AM #15 (permalink)
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Default Re: Some help required

I just want to say thanks to everyone for responding and I'm really sorry if I upset anyone. I'm really struggling to deal with the relentlessly progressive muscle loss and twitching and no one in the medical community can helo me. I've got a 2w month old and a pregnant wife. I'm sorry I'm just absolutely terrified and don't know where to turn to. I'm breaking down really badly every day. I'm sorry to everyone
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