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Dee123

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Joined
Sep 15, 2018
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5
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Learn about ALS
Country
UK
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Cornwall
Hi all

Firstly, you are all incredible and the way you put up with the clinically anxious is astounding.

I have over the last two years had significant health challenges, since developing severe Sepsis, which resulted in kidney and respiratory failure. Since that time I have undoubtedly suffered from Health Anxiety, compounded by discovering I have had a silent stroke (asymptomatic, or so I thought) and that I have a chronic immune disease which is causing me kidney disease. I also had a retinal detachment 10 months ago. All of this in the last two years. I now take 10 pills a day to keep various things in check. Clearly though, compared to ALS, this is a walk in the park.

I feel stupid even being here but I have been having loads of strange things happening for the last 6 weeks and made the mistake of googling them. I have a young family (2 kids) and am running a company that gives me lots of stress but I've always managed this before. I am a 45 year old man and admit I am very unhealthy (obese) and despite losing 80lbs earlier this year (on 6 months), I need to lose at lease as much again.

In the last month, I had a strange sensation in my left foot one morning, like Squelching or pulsing feeling in bottom of my foot but no visible fasc. It went on for about an hour, rhythmically pulsing away. Now my foot feels loose and without normal sensation. It's not numb to touch but isn't "normal".

I also get strange feelings all over my skin, like Paresthesia, in my feet and legs and occasionally my face. Like crawling or pins and needles but mainly and daily in my feet. The left foot especially. They are invisible, like fibrillations. Nothing to see, only sense.

For the last 4 weeks, I've had a really sore left leg, mainly my left calf and my left hamstring. It is as bad in the morning as night, exercise helps slightly but not much. I should point out due to my ckd, I get some oedema in my legs, the left one especially but this soreness is new, the oedema isn't.
Just in the last few days, my left little finger has become sore when I use it, like a slight arthritic feeling and perceived weakness (I doubt it is clinical).

To compound my fears, I walked half a mile yesterday (which was a real struggle, more than even a month ago) and just as I was walking back towards my house, I managed to twist my left ankle sideways and now the ankle is throbbing as well as my foot and leg twitching and pulsing.

I also have a really sore neck which feels weak and is getting worse and randomly, at times Inam getting strange pains in my flanks. These feelings do at times feel a little bit MS like and I also get visual disturbances ( fleeting) at times, like flashing traces in my eyes when I am tired. However, I had an MRI 10 months ago when they found the infarction in my brain and there were no lesions then. I also regularly get slightly stiff fingers in both hands when I wake and this is becoming more regular during the day.

I realise that I am coming across as hypochondriac here, but this is so hard to process and having had so many health issues in such a short time, Infeel "marked" in some way, like it's only a matter of time before something finishes the job on me.

I have a lot on my shoulders but the soreness, the fact that over the last 3-4 years all my toes have also lost sensation (again, not numb but loss of sensation) and the recent squelching, pulsing feeling in my left foot has me going crazy with fear. There is conflicting stuff online, even in this forum about sensation. The Sticky says it's not a sensory loss but lots of examples of ALS and other MNDs starting with aches, cramps and other sensory issues are all over. I have a lot of generalised atrophy all over after Sepsis and because I am unfit but the recent pain/soreness, paresthesia/pins and needles and squelching feelings are so hard to deal with.

I have had strength tests and visual inspections by two GPs, they both said all looked ok but another GP told me over the phone that the feelings I was getting in my face (including an intermittent bad taste in my mouth and a burnt feeling in my tongue) exhibited signs of Lower Motor involvement. That obviously hugely triggered my anxiety even further.

So my question is, if there are examples of ALS or other Motor Neuronal disorders that start with sensiry issues and pain, an I one or am I just in need of a fitness drive, more psychological help and a long holiday?

I'm sorry for the long and self-indulgent monologue, and I've waited weeks to write this because I kept hoping the symptoms would go away.
 

Dee123

New member
Joined
Sep 15, 2018
Messages
5
Reason
Learn about ALS
Country
UK
State
Cornwall
Sorry, I should add, I'm not diabetic but the strange feelings in my feet have spread recently from just my toes to now my left heel and the beginnings of my right too. If I sit cross legged, my left calf and left foot (bottom of foot) just constantly, invisibly twitch away. The whole leg feels like it's buzzing slightly, like electrical current is passing through it.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,238
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
I recommend you go to your primary care doctor. Start there. To diagnose yourself or hope that anyone here can diagnose you is not realistic.

Start with a doctor.
 

Dee123

New member
Joined
Sep 15, 2018
Messages
5
Reason
Learn about ALS
Country
UK
State
Cornwall
Hi Kim, I really appreciate your reply. I have been twice already but not conclusive and the wait for a neuro appointment I believe is 4 months. I think I need to push for this because the fear is so overwhelming and the pain is really hard to deal with. I am getting new bits starting to hurt daily, yesterday my little finger started hurting if I put load on it to push something. I know pain isn't supposed to be a factor but I've read elsewhere it absolutely can be, including on this forum elsewhere.

Thank you again.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,331
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
You have painted a picture that is not remotely close to ALS, but calls for ongoing work with a GP, nurse, health coach or therapist to build on your weight loss (kudos!) and get healthier physically and mentally.

Best,
Laurie
 

Dee123

New member
Joined
Sep 15, 2018
Messages
5
Reason
Learn about ALS
Country
UK
State
Cornwall
Thanks Laurie, I sincerely hope you are right!

Blessings to you and everyone else.

Dee
 

Dee123

New member
Joined
Sep 15, 2018
Messages
5
Reason
Learn about ALS
Country
UK
State
Cornwall
UPDATE. I wanted to update you because I liked reading updates from others.

I saw a neurologist this morning and he ruled out signs of MND (subject to other tests) but suggests a mix of Health Anxiety and Spinal issues. I've developed transient weakness in my left arm and pains in my neck, as well as knawing continuous pain in my left leg, from hamstring to calf.

I am having MRIs on head and back, then nerve conduction tests too but fingers crossed it'll be a mix of stress, spinal/sciatic type issues and maybe some other things like neuropathy.

I'll update further for completeness Post tests but thank you again from the bottom of my heart for your words and advice. I can't thank you enough.

Dee
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,356
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Thank you for the update. It is always very helpful when people return to tell us.

Good luck with your tests and treatment.

Enjoy a nice long life in one of my very favorite places on Earth!
 
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