Phoeberose85
New member
- Joined
- Jul 24, 2020
- Messages
- 5
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- UK
- State
- BC
- City
- Merseyside
Hi all,
thank you firstly for taking the time for reading this, I’ll give you the background on myself I am 35 I have 4 children aged 15,13;4 and 3.
My symptoms started July/August last year and have progressed quite quickly, I’ve gone from running a business to having to be helped with everything including eating, I can’t type text messages it takes me so long also. My right side is the affected side, it’s where I have the weakness, the fasciculations and my grip is weaker every day.
I used to manage with a stick around the house and wheelchair if out but this is increasingly difficult my legs give way more often and I will fall I’m also having a lot more dizzy spells. I have severe asthma and have nebulisers anyway but this is also getting worse, at night I feel as though I cannot breathe and my stomachs so heavy I can’t seem to catch breath it’s also harder to talk I just get so worn out and breathless.
My swallow is worsening and I am no longer able to swallow whole foods, it’s getting increasingly difficult to chew it’s like food is getting stuck underneath my tongue and making me choke and cough, whilst my jaw is so tired. I have lost 3 stone in 7 months and I’m now 6 stone I’m getting weaker and I feel my tongue fasciculations are also more regular pretty much every time I pop my tongue out.
My husband is very supportive and we have also been shielding Due to COVID, my neurologist thinks I may have PLS as my first EMG was ok although the man who took the test did not do it correctly as he only popped the needle in my muscle and didn’t move my leg at all or test my facial muscles or nerves or wrists so I had to have it retaken, also my chin.
Anyway I hope I’m making sense my question is just regarding your opinions if you think I should be getting any more help as in feeding tubes at this stage, I am now eating mainly ice cream and possibly even a bit of mash and gravy but I really don’t want to eat anymore I feel like a bad person saying this and I feel like so many people are worried about me but it really is so so much effort for me to eat the slightest bit that it wears me out so much. Does this make any sense to anyone and would any kind person have any advice for me?
also I had me EMG retaken 10 days ago and I have been referred to an MND clinic in London in the nextcouple of weeks,
Thank you I’m advance for your help.
thank you firstly for taking the time for reading this, I’ll give you the background on myself I am 35 I have 4 children aged 15,13;4 and 3.
My symptoms started July/August last year and have progressed quite quickly, I’ve gone from running a business to having to be helped with everything including eating, I can’t type text messages it takes me so long also. My right side is the affected side, it’s where I have the weakness, the fasciculations and my grip is weaker every day.
I used to manage with a stick around the house and wheelchair if out but this is increasingly difficult my legs give way more often and I will fall I’m also having a lot more dizzy spells. I have severe asthma and have nebulisers anyway but this is also getting worse, at night I feel as though I cannot breathe and my stomachs so heavy I can’t seem to catch breath it’s also harder to talk I just get so worn out and breathless.
My swallow is worsening and I am no longer able to swallow whole foods, it’s getting increasingly difficult to chew it’s like food is getting stuck underneath my tongue and making me choke and cough, whilst my jaw is so tired. I have lost 3 stone in 7 months and I’m now 6 stone I’m getting weaker and I feel my tongue fasciculations are also more regular pretty much every time I pop my tongue out.
My husband is very supportive and we have also been shielding Due to COVID, my neurologist thinks I may have PLS as my first EMG was ok although the man who took the test did not do it correctly as he only popped the needle in my muscle and didn’t move my leg at all or test my facial muscles or nerves or wrists so I had to have it retaken, also my chin.
Anyway I hope I’m making sense my question is just regarding your opinions if you think I should be getting any more help as in feeding tubes at this stage, I am now eating mainly ice cream and possibly even a bit of mash and gravy but I really don’t want to eat anymore I feel like a bad person saying this and I feel like so many people are worried about me but it really is so so much effort for me to eat the slightest bit that it wears me out so much. Does this make any sense to anyone and would any kind person have any advice for me?
also I had me EMG retaken 10 days ago and I have been referred to an MND clinic in London in the nextcouple of weeks,
Thank you I’m advance for your help.