Lou02
New member
- Joined
- Feb 14, 2022
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
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.
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.