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Thelights

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Hello All

I'm 25 years old
Was fit and muscularly toned in feb
ate reasonably well
don't smoke , rarely drink.
I have read the first post but would still like your input please.

For the past four months I have had various symptoms and little luck with the docs.

In the beginning (i think it was mid/late feb) I was taking a walk with my GF and noticed my hands felt weird/stiff/weak
and my top lip was a bit "off" as well.
This was followed by bouts of fatigue.
Another time both my Gf and I took a walk and I she interlocked her fingers in mine and I had a sharp shooting pain in my fingers even though she wasn't pressing hard.

Around that time I became aware that I had O,C,D and clearly had anxiety with it.
I went to the doctors who ran blood checks specifically on my thyroid (clinically subacute thyroiditis) however the levels are almost always within a normal range.

The fatigue persisted and the doc kept telling me We'll do another blood check soon and the next time we'll do another blood check soon.
During one of the blood tests I found out that I had herpes 1 aka the cold sore virus. my gf went to the city to work that weekend and i was a bit freaked and told her over the phone. That night I went over to my friends house and noticed the grip in my left hand was slightly off I also had numbness around my left pectoral and down my left arm. I was concerned it was heart related and so I called a nurse hotline. She told me if the symptoms persist/get worse I should go to the nearest hospital.

I was meant to sleep over my friends house that night, I decided to go home instead as I was feeling iffy.

for a week or two after that I still had the odd hands and concerns after I tried self diagnosing over the internet
(a bloody stupid thing to do when one has o.c.d i know)

Symptoms of fatigue persisted. I went to my GFs parents for a short get away and to meet them for the first time. My hands were still off.
during all this time I had laid off the gym because of the fatigue.
a week after the get away i felt mentally better
So I decided to go to the gym
The same day I got pain in the base of my thumbs and that really freaked me out, I went to my gf's that night and I couldn't swallow or chew properly (definitely anxiety related) I was even more aware of my hand issues. I went to bed early and my Gf said i was pissing sweat that night.
the next morning I thought I would have recovered from these symptoms .. no such luck

3 days later I went salsa dancing and i put weight on my right leg and it started spazzing out , the next night it was numb and twitching. a few days later i tried typing on the keyboard and had aches and pains in the hands trying to type.

gradually my grip has felt worse. I immediately started panicking that I had MND/ALS
I wasn't satisfied with my docs service and so I went to my mothers doc.. Typically I had a panic attack in the docs office who proceeded to shove anti anxiety meds at me . I wasn't happy with this as I felt as though he wasn't listening to me .
I told my mother who wasn't very impressed with what her doctor came up with. In some ways i can't blame him. However I wish he had taken me more seriously.

Doc3 By now my fatigue is worse (could lift 32 kg bicep curl struggle to lift 12 kg) and due to the worry of possible mnd/als i'm not eating as well as i should be (im 68 kg should be 72). This doctor wanted to help me more naturally. He told me that I had low vit D and a stomache bug called blastocystis. He slammed me on antibiotics and vit d supplements which I took religiously.
during this time I am having issues with my mouth the best way i can describe it is tired tounge , tired to chew, (that tingly sharp feeling you get when you suck a lemon or are nasueous *more notcieable on my left side but on the right aswell8) my left arm is fairly numb weak tingling and the weirdness persists in my right hand. Fasiculations aches and pains had started a bit before the consultation with the third doc. The doc wanted me to clean up my diet i.e. no wheat dairy or sugar. This made it even harder to try and feed myself. It feels odd trying to hold knife and fork , holding cups and mugs seems harder , hands seem worse in the morning don't even feel like grabbing gf's boobs my hands are that bad.holding a small book open with thumbs feels tiring.

unfortunately the third doc was only locuming and left 2 weeks ago.

currently i am weaker in the legs harder to carry groceries neck movement feels slower . I will be looking down at counter in work and look up to see customer and my head will jolt up as opposed to a fluid movement. 4th doc has prescribed mirtazapine which has helped with the anxiety, However ! I am still having issues chewing is still weak , im sleeping more and after i've slept i still feel tired . I get tired fairly quickly . If i eat a steak or talk alot my mouth gets tired and I feel as though its harder to speak/chew/ move tongue. swallowing has been a bit odd as well. I've lost hours at work as the bosses can see im not myself. My rents and gf are going of their heads due to my worrying. Im calmer after meds now but im more frustrated than anything.

4th doc had said there is little more that she can do and has fixed me up with a consultation with a rhumatologist (im sceptical as my bloods says no rhumatic athritis) will take 6 weeks. 4th doc was concerned with me taking 6 1000 iu's of vit d and said at my age i should only be taking 1 or 2 and just jumping in sun ---- then she statrs looking up symptoms for vit d toxicity on google in front of me ... WTF my symptoms started before i even knew i was vit d deficient . --- adding further to my frustration-- 4th Doc thinks it's a viral issue but can't say for sure hence rhumatologist

to summarize

Weak chewing
Weak tongue
Weak hands
Pain in base of thumb feels like RSI (predominant in the left thumb)
pain in fingers
Numbness and tingling down arm occasionally
Fasciculations all over (more concerned about fasciculation in base of thumb)
pain in toes
moving arm in circular motion e.g. washing round plate tweaks shoulders grinding click
standing for two hours puts pressure on right leg otherwise weak legs
head jerks/feels like a tremor
forearm biceps aches and pain
general shakiness
fogginess
aches around throat area
clicks and cracks around wrist and ankles
feel agitated when using hands like your pushing that last rep but without the strain
tender muscles

I absolutely agree this is a bloody long post
but this is beginning to frustrate me big time.
it's affecting my work and my life (was working 38 hours- only getting 9 a week now : (
).

The problem I have found with O.C.D (I started seeing a psychologist early feb) is that once you mention it to a doc, their eyes glaze over and they don't take you as seriously any more.
I'm like the boy that cried wolf , but alas I never cried wolf
I reiterate that my anxiety is lower now and I am now more concerned that issues are still persisting which leads me to believe it's not just anxiety. Oh I am also eating better regardless of the weak mouth.

Cheers

TheLights
 

Nikki J

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Your symptoms seem to jump around as does your post. It does not sound like ALS to me. I suggest you pull yourself together organize your concerns into a concise list go to whatever doctor is your current gp and calmly say I know I have anxiety/ ocd but these things have been happening and I am worried about MND. They likely will say it is not. You can say I am relieved to hear it but my anxiety is making me worry so much can you explain why you think these symptoms are not MND. And consider asking for more help for your anxiety/ ocd
 

Atsugi

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THELIGHTS: I paid very close attention to your post and I think--I know--Nikki is right. You don't have any signs of ALS.

Personally, I would wonder if you have a virus that is making you feel like shit. It happens. But I'm not a doctor so I won't diagnose you. But we know ALS really well and you don't have it.
 

Thelights

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Thank you for your reply both.
The most annoying part is being in the dark about it
and it feels like it's getting worse in some respects.
i called a MND specialist and she also said that it doesn't sound like Mnd
Hopefully I will find out whats wrong soon.

Thanks once again.
 

Thelights

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Im a bit boggled now .
I should also add that when i shrug my shoulders i can hear clicking in correlation with the pain when usimg circular motions with the dishes (my gf said as my muscles are shrinking the arm will move in the socket causing more agitarion). Holding my phone in one hand whilst lying down on bed with elbow as support is tiring. Also im getting fasiculations all over.
I am using my phone to make this message and my left thumb is pretty fatigued like rsi.
I forgot to mention my legs are quite heavy and fatigued , both feel like they are dragging.
Most docs think viral ?can that really go on for that long?

One observation .... considering I have weakness all over my body , would one area have been paralysed by now before it would have spread to another area ?

Was it sensible that my doc is sendimg me to rhumatologist and not neurologist?

Cheers
 

Atsugi

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Yes, a viral problem could conceivably go on forever.
Yes, ALS moves in serial fashion, paralyzing one muscle at a time.
Yes, your doctor is investigating logically.
 

gooseberry

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Avirus put a dear friend in the hospital for 3 months with neurological symptoms. They thought he had a brain tumor because he became partially paralyzed. Many tests, blood scans lumbar punctures etc, yielded nothing. In the end it was a virus. It happened twice in five years to him.

You don't have als. Be thankful!
 

Thelights

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Thank you for the replies once again ..
I feel like im on the verge of cramps in my left arm and possibly the arch of my feet
i say the arch of my feet as i had twitching on the bottom of my left foot , i went for a walk and noticed I had pain in that area (like the base of my thumb twitched and had pain). a day later i felt a tweak in my right foot arch.
as per blue&gold's post His post states that he had wide spread fasciculations .also my left hand is the one that is more "off" my pinch grip feels stiff and when holding a pint glass it doesn't feel right.
I also have tender funny bones
With the toungue jaw tiredness it feels like im slurring my speech although my parents tell me i'm not
if my girl friend hugs me or lies on me a tiny bit I get uncomfortable fast (tenderness in most muscles) (rubbing my palm side forearm makes the nerves in my fingers react like a tingle)
it also seem like Blue&gold was reasurred


I guess what confuses me is it's mentioned (in the sticky)that body wide fasciculations are not normally als , but one of the diagnosed members had the initial symptoms as body wide fasciculations ?

I also read blue and golds post
Hi folks. May I start by saying how wonderful it is for all the support members of this forum give to those seeking answers. I am a 50 year old male with a wide range of symptoms dating back to April of 2014. My symptoms starting with body-wide twitching; not occasional but constant. I can say however that the twitching was and still is much more aggressive on my left (non dominant side). At the onset of my symptoms I also noticed cramping in my hands but mostly in my left hand. When I would grip something or bend my wrist forward my fingers seemed to draw in toward my palm. My first neurological exam was on May 29th, 2014 with a regular local neurologist. After doing an EMG and NCS on my right side (even though I told him my left side was more affected) I was diagnosed with Cramp Fasciculation Syndrome. The EMG showed fasciculations in all muscles tested but no positive sharp waves. The NCS was normal.

In September of 2014, my Primary Care Doc thought I should get a second opinion and sent me to the Neuromuscular Center at Cleveland Clinic. By this time my left hand had gotten worse and my "pinch" strength was declining along with visible atrophy in the left thenar. After my clinical the only weakness found was in my left thumb and pinky finger. I did have hyperreflexes but they were equal on both sides. I had a very thorough EMG and NCS and the specialist noted fasciculation potentials in 19 of the 22 muscles tested. He noted the following:

1. Reduced recruitment patterns and chronic neurogenic motor unit potentials in the C8-T1 myotomes with no active motor fiber loss.
2. Normal sensory and motor nerve conduction studies
3. Findings were suggestive of an intraspinal canal lesion affecting the C8/T1 myotomes.
4. Chronic motor fiber loss changes in the abductor pollicis brevis and adductor digiti minimi.
5. These findings are insufficient for a diagnosis of widespread disorder of motor fibers like that seen in motor neuron disease.

So an MRI of the cervical spine was ordered but only showed mild to moderate disc bulges and some osteophytes in multiple discs. However, Cleveland Clinic did not pursue any further and advised me to take magnesium and drink tonic water. For one clinical and the EMG/NCS they charged me over $10k.

Fast forward to today...I am now having speech difficulty which has gotten progressively worse since November of 2014. I find that I often have air escaping from my nose when I speak and cannot articulate very well. All of my family has now noticed it. I have no issues with swallowing with either solids or liquids. My main issue is constant phlem in my throat that just will not go away. The weakness in my left hand is still mostly confined to the "pinch" grip. I find it hard to cut the fingernails of my right hand with my left. It is harder to button my jeans with my left hand as well and the thenar is practically gone in my left hand.

I am not going back to Cleveland Clinic as I have a high deductible HSA plan and simply cannot afford their services. I found out that West Virginia University (in my home state of WV) has a neurological center that has been approved by the ALS/MD Society(?) so I am hoping that I can get care cheaper here in my home state. I have an appointment on March 30th.

I guess having given you all this background, one of my questions would be if I am diagnosed with MND, might I have a slower progression since it has been 10 months since onset of symptoms and I still have use of my left hand and it is only weaker? Also, no swallowing problems? I know every PALS is different with their symptoms and progression but I am trying to find something positive. I don't mean to sound like I have already been diagnosed, however having these progressing symptoms for almost a year with all other blood work and MRI's of the brain and cervical area negative, I'm preparing myself for what may come.

Thank you all for any insight.

Vince
 

Thelights

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I should add that i've also had jerks e.g. a whole finger twitching or a leg just randomly jerking out of place which points more to bfs .. However my initial symptoms were hand stifness and fatigue along with weird feeling in the mouth , not "bfs twitching" twitching came later after my whole body felt weaker.
 

Thelights

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I've also bit my cheek and tongue in the past couple of days
 

Thelights

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apologies if i seem persistent. I have worried my mother sick and she won't listen to me now. im scared as it seems are getting worse.
 

Atsugi

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Go get your fear taken care of. You don't belong at an ALS website. We give advice to people who might have ALS. You don't. Time to stop pressing the issue.

As you say, things are getting worse. Go to where you can get them fixed.
 

ECpara

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You are all over the place. To be honest, you sound like you've studied various PALS posts, then picked and chose as many symptoms you could deem you have. Sorry, ALS is generally slow and subtle at first. And you're 25.....the odds for someone your age with ALS are astronomical. You don't have it. No way.
 

Thelights

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I have called up the Rhumatologist clinic and placed myself on the cancellation list, so if something comes up I will be in sooner.

I can completely understand that I sound like i'm out of my box.
I really don't want to piss you guys off.

Sitting back and taking a deep breath, I can honestly say things are worse and progressed from something subtle i.e. the slightly stiff weird hands and lip. Initially I had no pain!

I didn't have twitches in the beginning. Now that more of my body feels weaker (holding things requires more effort even wiping myself after loo feels harder) I am having body wide fasciculations (literally head to toe) more so in the offending weaker/tender areas.

My girlfriend and mother don't believe me when I say my speech "mouth is off" but to back up my story 2 customers in the past 3-4 days have thought I said $8 dollars instead of $5
I'm from Wales and live in Aus, so accent could be a contributing factor ,but I've lived here for 8 years and haven't had people get confused in such a short period of time.I am thinking about my mouth when i talk which may not help.

People have been commenting on the fact that I have lost a lot of weight(and keep loosing) 18 kg from april last year to feb this year was fit and now another 4 kg . I was 90 kg and I'm now 68.

I'm not someone who wants ALS of course, but putting my "all over the place-ness" aside

does this make any difference from when I first posted my frantic mess?

Im concerned that the rhumey will listen to my speel and just give me meds for aches and pains and then i'll be back in limbo.


In the sticky it mentions that aches pains and tenderness point away from als...

however it also mentions that you do get pain later down the track... how much later... bed ridden?

Thank you for putting up with my queries.
 

Dusty7

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Yes, pain comes much later... after your muscles don't work and your joints have become locked, or when your muscles can no longer hold your joints together... or when you're bedridden. That's not you.

It's time to leave this site and go seek help for your anxiety...
 
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