Help me understand - confused and worried

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Hopeas92

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Joined
Sep 24, 2022
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Reason
Learn about ALS
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00/0000
Country
UK
State
UK
Hello everyone,

First, I would like to thank you all in advace for taking the time to read through my situation and advice me, if possible. My heart goes to all of you who are in here, no matter whats your circumastances are cos Its hard!

I just wanted some advice from people who are in this as they might have a better idea on what it is happening and/or if they can at least relate to my situation at all (given this all covid thing going on)

I started having weird symptons since Mid May which made me think of the worst and cant put my mind at ease...
I started off having upper back pain, off balance sensation and horrible and CONSTANT tingling and pind and needles sensation in all my 4 limbs from the first time in morning till bed time which improved only with walking or moving.
It lasted for about 2 months but I was still able to work and do my things somehow.

Since August, the pin and needles sensation stopped but I started noticing more worried symptoms : started feeling weak especially when climbing stars or riding my bike for a little while or walking for a long distance and my right arm has difficult holding my phone for a while or typing and writing as my right hand constantly get all numb and shaky and my right forearm muscles and chest start twitching as if they are suffering, joints in my shoulders, knees and wrists make a cracking sound while moving and thumbs in my hands constantly get locked up.

Alongside all this, its been 3 months that my bowel stopped working as usual (its really hard to go to toilet and get always constipated ) and my period stopped as well .

I checked in with my GP and got different exams: MRIs of my head and spine, neurologic tests to a neurologist, done alot of blood test to check CPK, thyroid, aldolasi and an EMG test at the beginning of Sep- everything came back all clear.

I was relieved in a way but on the other hand my problems still persist and I havent got back to get back to normal due to this problem with my right arm... im very concerned cos I know ALS is hard to diagnose regardles and I used to train really alot (more than 5x a week).and beyond my limit since pandemic hit us till like May this year so im worried i might have done smth to myself due to that. I find really hard to believe this is just "in your head" kinda sentence . Really scared cos my CENTRAL NERVOUS SYSTEM seems completely out of wack..

Thank you and stay strong you guys 🙏🏻
 
I would consult a rheumatologist to rule out the conditions they see, but there is no reason to think of ALS.

Best,
Laurie
 
Definitely nothing to do with ALS.
I'm sorry you don't yet have a diagnosis, but what is going on it will need medical people working physically with you to examine, order tests and diagnose.
All the best, this really is not somewhere that can help.
 
Thank you both so much for your answers. Really make me feel a bit better so I appreciate it 🙏🏻

@♡IgeIb I tried to check in with a rheumatologist and once again I was told I'm all fine... was prescribed some anti inflammatory medication as a result of my swollen tendons and cracking joints...
I know Numbness is usually not linked to als but my nervous system really seem off and all the discomfort I am going through is really frustrating and made me think of all the possibilities -

@affected thank you for advising me. I really appreciate it 🙏🏻 I was just concerned about my right arm as holding my phone for a while make me my right hand all numb and shaky and my muscle to twitch. This made me think of something more serious since everything else has been ruled out by doctors so far and I dont know anymore what to think..
I thought either covid vaccine or my intense training routine could have trigger something. Do you think that is possible? There is so much info about online and makes you confused.

How are you both anyways? Would like to know how you feel 🙏🏻

All the best⚘
 
Nothing you've posted points to ALS in the least. Numbness, swelling, and cracking joints has nothing to do with ALS onset. As for what we think may be happening? That's what you'll need to continue to work with your docs for.

Also, we don't diagnose on this site, as this site is for ALS, not other issues that may be going on with an individual. I'm sure your doc has given some inclination as to what they think you should do. I can't imagine with your numerous appointments, that someone has not said anything about steps to try to feel better.

If you've missed something, it's best to go back to the source that can help you best- your doctor (not strangers on the internet).

Good luck to you.
 
It seems you didn't read this so I advise you read really carefully. Most folks find reading twice is a good idea.

Shaking when holding a phone is nothing to do with ALS neither are vaccines.

Stop becoming a medical detective, ask you doctor what you should do next, then follow their advice.
If you don't wish to follow their advice that is up to you, but you don't belong here for even one more post truly.
 
Thanks for your replies.

And sorry if I didn't sound appropriate, I didn't mean to offend or upset anyone....its just that it's hard to trust doctors when you go through a bad time physically and nobody seems to really help you out or address your symptons, to say the least.

Regardless of what an MRI or EMG and bloodwork tests can say , you end up being left alone with all your physical issues and no cure or answer to what's really going on and then you start thinking of all the possibile options....

I read the sticky note and I got the point of it-
The twitches I started having in my right arm and the numbness and shaky feeling of my hand is what made me think of something more serious as this doesn't sound normal to me and got worried ... but I just stick to the EMG results I got hoping that things will get better.

Thank you again. 🙏🏻

I Think I got the point of it a bit better*
And in the meanwhile I started to do my own research to see if this could be a small fiber neuropathy or smth else which cannot be seen in EMG..

Thank you again for your time and patience* 🙏🏻
 
Often there is "no cure or answer." At that point, you start gently experimenting as to what helps you feel better (diet, hydration, new pillow or mattress or chair, exercise, sleep, stretching, other lifestyle changes, etc.), while also just living your life to the best of your ability. Helping those less fortunate can be a great motivator in that.

I know you'd rather have no answer and the need to do some self care, vs. ALS.

All the best.
 
Yes, Your totally right!

And Was thinking about that too!
Diseasea shouldn't exist at all - we all deserve to have the same chances in life. So helping is a greaT way to do your part where possible.

Praying for everyone in this community 🙏🏻
 
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