dphk77
New member
- Joined
- Oct 17, 2018
- Messages
- 6
- Reason
- Other
- Country
- UK
- State
- Wiltshire
- City
- Nr Swindon
Hi my name is Daniel,
I dont know if I have ALS but reading your posts / threads have helped me significantly on processing everything that has been happening to me in the last month and reading about your strength and sometimes humour during adversity only gives me strength whatever my future holds so thank you.
I am 41 and suffered with IBS for around 10 yrs but have been mainly healthy in the past.
I will just list my symptoms:
1. Have had random fasciculations in fingers / forearm (left) for last year or so just thought it to be repetitive strain injury from overuse of my laptop, but last month has been every day without laptop use. Fasciculations now widespread.
2. Dropped weight from 93kg to 84kg in 3 weeks holding steady now at 85-86kg.
3. I understand that I cant diagnose myself with atrophy but I believe I have lost a great deal of muscle in my legs, arms, shoulders, buttocks, as I have alway been very stocky (clothing fitting that didn't 3-4 weeks previous).
4. Have burning sensations in most muscular regions on and off but consistently on my left side especially my arm.
5. Muscle twitches come and go.
6. Fatigue - Walking feels laboured if I stretch out my stride feels uncomfortable in my hip area, mowed the lawn the other day and my back was burning most of the evening also aching. I also feel exhausted by around 7pm will go to bed early but feel unrefreshed in the morning.
7. Extreme thirst - no matter how much I drink, waking up 5/6 times during the night to quench my thirst as mouth is so dry.
8. Have been having cold sweats for last year.
9. Have started to wake up too both my hands being numb / pins and needles as if I had slept funny on them - I then flex them and they return to normal after a few seconds.
10. Face / Lip / Neck - numbness / burning, I believe I have got some nerve damage to my bottom lip and when I smile the left side of my face doesn't show symmetry to the right my dimples are much more pronounced on the right and my lips raise significantly on the right when I smile.
11. So hungry eating breakfast and puddings where I have not for many many years.
I have browsed the stickies that are available and my main question would be:
Whilst sensory issues are not connected to ALS / MND in most cases but is that 100% the case as I have read in a few places during research on ALS / MND that there can be some cross-over into sensory issues is this correct?
Secondly has anybody else had some of the more vague symptoms I am currently having before diagnosis? Or any other ideas what could be going on?
Not looking for a diagnosis just a little understanding.
I understand that depression, anxiety and stress could lead to some of these symptoms but feel ok within myself.
I have been tested for a stroke whilst my bloods, CT and MRI (Head & Neck) scans have all come back clear I have an EMG on Monday 22nd and have been referred to Neurology.
Thanks for taking time to read my story I apologise in advance if I have posted this incorrectly etc I am a technophobe.
Will update when I receive my EMG results.
All the best to everyone on this forum.
Daniel
I dont know if I have ALS but reading your posts / threads have helped me significantly on processing everything that has been happening to me in the last month and reading about your strength and sometimes humour during adversity only gives me strength whatever my future holds so thank you.
I am 41 and suffered with IBS for around 10 yrs but have been mainly healthy in the past.
I will just list my symptoms:
1. Have had random fasciculations in fingers / forearm (left) for last year or so just thought it to be repetitive strain injury from overuse of my laptop, but last month has been every day without laptop use. Fasciculations now widespread.
2. Dropped weight from 93kg to 84kg in 3 weeks holding steady now at 85-86kg.
3. I understand that I cant diagnose myself with atrophy but I believe I have lost a great deal of muscle in my legs, arms, shoulders, buttocks, as I have alway been very stocky (clothing fitting that didn't 3-4 weeks previous).
4. Have burning sensations in most muscular regions on and off but consistently on my left side especially my arm.
5. Muscle twitches come and go.
6. Fatigue - Walking feels laboured if I stretch out my stride feels uncomfortable in my hip area, mowed the lawn the other day and my back was burning most of the evening also aching. I also feel exhausted by around 7pm will go to bed early but feel unrefreshed in the morning.
7. Extreme thirst - no matter how much I drink, waking up 5/6 times during the night to quench my thirst as mouth is so dry.
8. Have been having cold sweats for last year.
9. Have started to wake up too both my hands being numb / pins and needles as if I had slept funny on them - I then flex them and they return to normal after a few seconds.
10. Face / Lip / Neck - numbness / burning, I believe I have got some nerve damage to my bottom lip and when I smile the left side of my face doesn't show symmetry to the right my dimples are much more pronounced on the right and my lips raise significantly on the right when I smile.
11. So hungry eating breakfast and puddings where I have not for many many years.
I have browsed the stickies that are available and my main question would be:
Whilst sensory issues are not connected to ALS / MND in most cases but is that 100% the case as I have read in a few places during research on ALS / MND that there can be some cross-over into sensory issues is this correct?
Secondly has anybody else had some of the more vague symptoms I am currently having before diagnosis? Or any other ideas what could be going on?
Not looking for a diagnosis just a little understanding.
I understand that depression, anxiety and stress could lead to some of these symptoms but feel ok within myself.
I have been tested for a stroke whilst my bloods, CT and MRI (Head & Neck) scans have all come back clear I have an EMG on Monday 22nd and have been referred to Neurology.
Thanks for taking time to read my story I apologise in advance if I have posted this incorrectly etc I am a technophobe.
Will update when I receive my EMG results.
All the best to everyone on this forum.
Daniel