Really worried!

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Lou02

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Hey everyone
I'm sorry to bother you and if anyone feels they can respond I'd be grateful.

This problem became obvious to me after the birth of my child.
I had pins and needles in my hands, feet and lips. At the time it didn't bother me but a few weeks later I got Nora virus and was hit with a ton on neurolgical symptoms:
Vertigo
Brainfog
Nerve pain
Feeling like my legs were receiving the message late from my brain, difficulty walking
Stiff jaw and muscle cramps.
Aching wrists and hands

At this point I was reassured by the stickies that my symptoms were body wide and alot of sensory ones which would point away from ALS

All bloods came back normal. I had a brain MRi which was normal and now waiting to do neck mri and emg of the facial area.
The neurologist said they are not looking for mnd with the emg but just because of the stiffness I'm reporting.

So the reason I'm here is my symptoms are mostly in my bulbar area now with the body wide symptoms disappearing:
Most of time numb tongue
Intermittent stiff tongue- very concerning!
Struggling to say words with letter S and sometimes my tongue just seems to stop working mid word , maybe due to stiffness of tongue.
Sometimes feels like my head will split in two, tightness at temples. Very disturbing symptom
Biting the sides of my tongue and neck cramps
Very stiff jaw
Speaking with exta force! Because of stiff jaw
My family say my speech sounds normal.
I am so distressed by all of this I really feel like a deer in headlights, very upsetting to think I'm going to get a life changing diagnosis that will affect by children's life's.

I'm really not coping well and don't know how to get by while in the diagnostic step.


This has been going on for 7 months now and has really effected me mentally.


Would ALS start in all areas then settle in Bulbar area?
In any of your experiences or research does this sound familiar if not with ALS then with something else?
Could this be umn bulbar or pls?
If this was a virus would it not have cleared by now?
Can ALS make you feel generally unwell? Some days I feel so off, some days very fatigued, mentally and body.
I'm so confused!
During my pregnancy I felt off, unusually tired, daily headaches, slight blurry vision and dizzy/vertigo. I remember thinking my toes were numb but put it down to poor circulation during pregnancy.
Sorry for the long post I'm just struggling to stay positive with on going disturbing symptoms.

It's not as though I'm just anxious about minor symptoms, I'm really struggling to talk.

Finally how to guys find peace with your diagnosis as I feel so much stress I just want a little peace to help me through.
Thankyou for your time.
 

affected

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Please go back to your doctor.
The sticky post addresses all your questions, but you are becoming anxious and ignoring what it says now, even though it reassured you initially.
You are not describing bulbar onset ALS, not even a little bit. Not in even one single thing you describe.
Take a copy of this post to your doctor so you can be honest about how anxious you are. Your last question in particular is really very inappropriate if you step back and think about it.
Please get help, you can return to full health, lead a long life, and make your new child your priority.
 

Lou02

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Thankyou for your reply affected and I am sorry, you are right., that question came from a place of high stress and I should of thought better.

I have been looking at this forum for a long time and was reluctant to post, constantly trying to reassure myself but when my body is constantly reminding me there is something wrong it is so hard to ignore.
My post came from a very upset place

I need to speak to my Dr about my stress.

Sorry if I caused any offence, truly .
 

Lou02

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Hi

Could the stiffness in my jaw and tongue not be spasticity? Or would it not come and go throughout the day, would it just remain stiff?

I could deal with the limb symptoms just my jaw and tongue are so worrying and whilst I wait for the emg I just feel really concerned.

I also just don't feel well and simple tasks like making a cup of tea is huge mental effort and too much noise from the kids makes me confused 😔
Thankyou
 

Bestfriends14

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No, I really have no idea what is going on with you. It truly is best to continue working with your docs. If you are feeling mental fatigue just from making a cup of tea, please let your doctor know, as well. He can work with you to find a solution to where you can feel better.

Good luck to you.
 

affected

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You need to go get examined by a doctor then ask that question.
You are not describing ALS in the slightest.
 

Lou02

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I have been examined by a neurogist, no clinical findings. The thing with my speech and the tight jaw it is intermittent throughout the day so wasn't present at the time.
Today my tongue has felt rigid for most of the day but I'm still able to move it.
I'm just worried as if feels like its getting worse, as it started with pins and needles and numbness and has now progressed to speech issues and stiffness.
I have am emg is a couple of weeks and I'm really frightened about it.

Thanks for taking the time to respond both of you
 

lgelb

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ALS doesn't get worse from a normal clinic exam when you are having issues to moving to speech virtually overnight. And bulbar function doesn't manifest with its feeling stiff or difficult as you describe.

I would ask a dentist to check your jaw -- you might need a nightguard or other therapy. Allergies, lack of sleep (which is supported by some of what you say) and/or GERD can play a role, and your GP can explore these with you. But I would see no reason to be frightened of the EMG showing ALS.

Best,
Laurie
 

affected

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I hope that you can either discuss your fears with your PCP or work on some ways to relax and improve your general health while waiting for the EMG. We are trying to reassure you that we know ALS intimately, and you are simply not describing it. I lost my husband to bulbar onset ALS and have supported many people with the same locally to where I live, and on this forum for years.
It just doesn't happen the way you are describing, so getting help with facing your fears will really help you.
I'm not saying this is all in your head, just that there could be any huge number of treatable things going on, so getting a grip on the fear will only help you find the right diagnosis and path back to health.

Let us know the EMG results, but we can't offer more until you have those now.
 

Lou02

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Thankyou Igleb, affected and bestfriend.
Your responses have given me great comfort.
I will be back with the results of emg and if/when I have a cause/diagnosis of what is going on with me- to help others with similar symptoms.
 

Lou02

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Update:
I just had my nerve test and Emg. The Dr was very thorough and checked many muscles, feet, leg, calf, thigh, hands,arm, bicep and tongue.

She said she would review in detail later and send to my neurologist but from what she saw everything looked fine 🙂

This was such a relief, I was so nervous during the exam and prior to going.

She was so attentive and also reiterated that my symptoms don't sound like MND.

Again everyone thankyou for your support and if i fully recover or am diagnosed with anything else then I will report back to help others in a similar position.

Best wishes to you all.
 
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