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CJay

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Hi I am a 41 yr old male. I would like your advise on a set of symptoms that seem to at least put ALS as a possible diagnosis.

I was diagnosed with ME./C.F.S in 1999 typical symptoms , at this time I did have muscle twitches for a few months shortly after onset, thought nothing of it.

Late 2008 I seemed to relapse with more M.S. like symptoms. My arms started to shake when I lent back on them, my left hand became weak and it became difficult to do buttons. Although this fixed to about 70% of its normal function over two years. At this time I also experienced a tickling feeling in the backs of my legs between my butt and my knee joint, like the nerves where letting go, loss of balance and needed a walking stick for about three months.
I was referred to neurology and given an MRI of my spine and Lumbar puncher. Both came back ok, was told M.S was possible but no evidence.

Since then I have always suffered with balance problem, the left hand issue and cognitive problems, remembering which word, more recently forgetting how to spell words I've known my whole life. I began to complain I felt old for my age and had pain in between my ribs, which hurt when I pressed on them. Also find it harder to breath during the night, like my body wasn't supporting itself when I slept on my side, sinking into the bed and my ribs closing round my lungs. The breathing issues feel muscular and not from the diaphragm, more the upper ribs.

Forward to July 6th 2017.
I start noticing unscrewing bottles is harder, like I've sprained my index finger, but I hadn't. This lasts a week and begins to repair itself until I go to open the fridge and my finger tips fail a bit, like somebody was holding the fridge door closed, it jerks my hand. Same happens with the dishwasher, feels like it needs twice the amount of strength to open it.

I put this down to an M.E/CFS relapse, but a few hours later middle to little finger on both hands become harder to control.
The episode in 2008 had left the ring finger on my left hand weak and it would sometimes move about by itself, which was spooky as I could not feel it moving, but could see it. Also when ever I raised my arms for more than a few minutes, e.g holding an iPad , middle to little would go cold and numb on both hands very quickly.
These same fingers are effected, it made it hard to hold scissors or hold a teaspoon, buttons etc. The middle on each hand seemed to want to steal away from my index, I had crushing feeling in the finger tips and numbness down the outer side of each ring finger.

Over the next three days they begin to heal , I am left with finger pain in both pinkies when I make a claw. Sometimes the right hand feels tight and springy when I flex it, making a fist and opening.

About 3 days into repair my balance is effected and my right knee becomes weak instantly, I find it hard to stand on my right leg and it slips to lock at the knee in a backwards position , I start using a stick.
The same evening my mouth feels funny and my bite is out of position , banging my front teeth against the bottom, my jaw has clearly shifted slightly, makes chewing soft foods harder like noodles. At this time I kept gurning, pushing my bottom teeth out as if the bottom jaw wants to go forward. I thought it might be stress, but now I don't think so.

At the same time I feel intense fatigue different to M.E/CFS, that is like a flu fatigue , you feel more fever than tired and shakey. This was more a 'I've just been down the pool I need my bed' tiredness. Uncommon for me.

At this point at rest I feel like my neck is stiff, like I have a metal plate in my upper back pulling my neck backward. Then I get intense burning sensation, like sunburn running down my back, also in lumber region like vibrating going in waves from lumbar to tail. Moving about reduces this.

I go to sleep that evening and I am woken up short of breath and feel paralysed unable to move with an electric shock running down the whole of my spine, vibrating like somebody is rattling a metal rod inside it. Burning again in my back , back of hands and legs, intense pins and needles in the soles of my feet.
This happens about three more nights and settles to just burning in my calfs with constant muscle twitching in them on and off for about four more days. Some twitching in backs of hand and below the thumb, but mainly after holding stuff.

I notice my finger tips have regained strength, but my wrists are weak when holding things, also when putting my iPad down , instead of placing it, it snags my wrist, like the last bit of support is gone.

I now at this point remember other stuff, my cat feeling heavier when I pick it up, he has not put on weight. Plates seem heavy, stuff that needs wrist strength more than arms.

A couple of times I've yawned and it's turned into a grunt. Only once have I had vocal modulation when talking, like I'm crocking from the back of the throat. I can't even be sure of that, it happened too fast before it fixed.

My hands seem fixed, my arms, apart from wrist seem ok, right leading side seems slightly weaker. Still using walking stick but legs are better, although longer distance they seem to give up a bit, especially pushing off from the toe, like my toes get too tired so I'm just walking on the other parts of my foot.
Small amounts of exercise , as in walking, using hands seem to improve function until rest though, then then become weak again.
Still having twitches, increase while anxious, writing this under my nose has started twitching.

I'm confused about the intense sensory stuff though, I wonder if stress has made that worse, or whether it is a stress response on its own ?

At the moment I fear the worst as the more accounts/case studies I read, the more it seems like ALS not M.S and certainly isn't M.E relapse.

I'm not slurring words at this point. Mainly balance , weak legs, slightly weaker arms, some nasal backflow, new clicking joints, not very clicky normally. Tiredness , having mini naps, this is when sensory problems happen, stress ?

Anxiety subsided , did have a swallon , fuzzy tongue, slightly stiff at back, but this has gone somewhat, I put this down to stress as well, or maybe the nasal backflow ?

Mainly confused that some parts seem to have repaired themselves to a degree ? A lot of posts say once something fails it gets worse ? But from some of the case studies I've read this isn't true always? and some people have even repaired to go down with ALS a few years later ?

Sorry for such a long detailed post, at this point I'm waiting on blood tests for vitb12 etc. Then I will seek a Neuros advice I guess.

Any of this chime with anybody ?

Best regards

Chris
 

lgelb

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Chris,

As you will appreciate, without neurological exam and testing it would be very difficult to differentiate your pre-existing conditions from any suspicion of MND. However, in answer to your last question, it is very rare for ALS overall to "improve," even more to relapse and remit as some subtypes of MS do.

I think you are on the right path for answering the larger question.

Best,
Laurie
 

CJay

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Many thanks for taking your time to reply, I really appreciate it.

I'm hoping my initial improvement continues, then I would strongly suspect M.S. given my history and symptoms. You are right, without more tests I can't really speculate. I also realise I may never get conclusive answers.

I have learnt a lot about ALS, the desease and the personal, social and family challenges over the past week, it is very humbling, thank you everybody that has shared and continued to support.
 

CJay

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My bloods are back, everything is normal apart from Vit D which is quite low apparently. Still waiting for a Neuro appoinment, I should hopefully get a call this week.

Quite worried about some new symptoms though.

Although I have minor problems eating, my jaw seems to feel a little dislocated at times. If I lie on my side it just seems to hang, infact I realise now the dead/extra ? skin in my cheeks may not be from biting but from just weakness and the cheeks just lying and pulling through the teeth when I'm alseep.

The other thing that has raised concerns, I woke up at one point and had this feeling like my nose had colapsed, I even got up and checked in the mirror, but my nose looked fine. I now realise that the muscle/cartilage ? has gone. The tip of my nose used to be springy and I could flare my nostril easily and even have quite a bit of resistance when squeezing the ends of the nostril with my fingers. Now there is no resistance and the tip just feels soft and floppy (although looks normal). I thought I might be imagining things, but my partner has confirmed this, she won't even touch it again as she says it feels weird now.

Also, a symptom I have read on here , and can't find it anywhere else. When my jaw was at its weakest I also had problems blowing my nose, I could do it, but air was escaping down my throat as well, a sort of back flow of air that I have never had before. It has passed now, but maybe because I am tensing when I blow now ?
I also have a sensation of water being up my nose, like the residule stuff you get when you are swimming.
Breathing through my nose makes this better, something that I have only been able to do easily since this started, previously I mostly had to breath through my mouth as my nose wasn't a very good airway since the onset of M.E.

My saliva seems to change between thicker stuff that can be a bit stringy, never get this normally, and very thin stuff that feels as if it collects at the corners of my mouth, infact they feel a little pursed. There is no visual indication of this however, also I am not drulling, even at night.

Obviously these newer symptom have me worried about Bulbar issues. The other thing was if I lie without a pillow ( have been trying beds for a new appartment) my muscles seem to cramp a little in my face, like there is no support, as if im on a fairground ride and G is pulling on my cheeks. Again I think this is why I have thickened skin in my cheeks, not so much dead white stuff but a build up from teeth damaging them.

I have had no problems with slurring at all, but with R and syllables, I have had this for years due to M.E. mostly swapping, so Ga-rage becomes Rage-gar. But now I'm having to think about pronouncing things a lot more, my brain even gets confused beween what I want to say. I.e. I will go to say 'hands' but mean 'arms' and it will come out 'harms' instead.

My involuntary 'gasping' seems slightly worse. Mainly when I sit and lie down or move more suddenly, like I'm twanging my diaphram ? I have no sensation of this though, but hiccups also have fallen silent. No hiccup noise, just the reflex. Burps have been very lose since 2008, but have gotten worse now.

Other symptoms are much the same, nothing worse elsewhere 'touchwood' Twitching is mainly calfs, thenar on right (initiated by squeezing thumb into hand or holding things) Under right eye and rarely in right tricep. Both calfs is most frequent, mainly when bent.

Still waking at night with trunk weakness, probably the worst symptom, just feels like I'm bones and flesh on waking. I dread going to sleep because of this. I think I have slept the whole night through twice in the last month, with extreme head sweating as soon as it hits 22:00, I generally fall asleep at 00:00 waking at 3:00 and 6:00.
Am walking without a stick now, but get tierd easily, balance still off, especially when turning, find my self leaning against supermarket shelves when shopping, like a lazy teenager.

Hopefully my Neuro will ring soon, he is an M.S. specialist, so I will see pretty fast if he thinks this doesn't sound M.S. like, which the face involvement doesn't from my investigations.

I know I write longer replys, sorry not very PALS friendly, I don't expect answers as such, more if anything conserns people 'in the know' as it were, partly as diary of somebody having issues that could be ALS related.

Thank you for your time.
 
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CJay

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I have a question if anybody is able to answer.

Is velopharyngeal dysfunction idiosyncratic to ALS in adults ? It sounds very much like what I am experiencing, that and involuntary breathing. A shudder and gasp like I have been crying and need a breath. Often happens when I am leaning back or standing.

The soft palette? Issue is like I get air forced up my nose while I talk. Not sure whether this is a bulbar issue, it is worse if I'm angry or anxious.

Thank you.
 

lgelb

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There are many causes, ALS being a rare one. If the neuro appreciates it and suspects a non-neuro cause, s/he may refer you to an ENT and/or SLP.
 

CJay

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Ok so had my Neuro appointment, such a personable guy. Promised he would get to the bottom of things.

Sadly I am clearly having Bulbar issues and he agrees. My neck is offset now , my lips on the right do not seal, about a 5mm gap when resting the the lips closed.
Reflexes are jumpy 'everywhere' he said, but I can see my right leg is especially jumpy. He did say the Bulbar ones ? where not that bad, I assume the jaw and chin ?

He kept on asking if I had been in an accident recently , especially when listening to the back of my right neck. It does make a bone clunk if I rotate it to the left or move it from lying on my right shoulder to straight. Do I need to be careful ? Could I cause damage ?

For now he said he wouldn't even diagnose me with benign M.S. (Considered from seeing him eight years ago) He did say I have a condition I cannot remember, but felt this might be just giving me peace of mind. Something to do with a hyperactive nervous system, basically my brain is giving out toomany signals ?

He is going to get an MRI done but also an SSEP.

I'm pretty anxious tbh. He has also prescribed 37.5mg a day of Venlafaxine to 'dampen my overactive nervous system' if I nderstood him right.

He also said the damage is done in the Bulbar area, but I could lead a pretty normal life as it can be controlled through drugs, as a last resort he would use steroids, but he said they cause too many health issues.

I feel like I am being prescribed more on the M.S. side of things, but MND is still seems like where I fit most. I read MS accounts and ALS, and sadly I relate to the ALS ones the most.

I don't have vision, numbness or tingling problems atm. I just sweat constantly, breath seems to escape if I even jig up and down, I like pant I.e. Not out of breath but air escapes easily. Weak diaphragm ? Biting my front lips when I eat, sauce goes all over them if I eat a Chinese. Hands and legs still effected, but nothing like they were on onset two months ago.

The biggest issues are clearly Bulbar and right shoulder/neck which is the source of right side weakness for me. There doesn't seem to be much muscular support around the neck and shoulder blade and tricep on that side.

Hopefully my Neuro is right. I guess the SSEP will be the most telling. Will they follow it with an EMG if it's not looking good ?

Best Chris
 
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