Ruggerhead
New member
- Joined
- Feb 18, 2021
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
I am so sorry If i am taking up valuable resources, but I have been on these forums for a few weeks and just a little confused as to a couple of things. I believe like many that I may have fallen down the rabbit hole of ALS anxiety.
Background, a few strange things going on this year for a previously healthy 60 year old, white male. Was in hospital for stomach ulcers, and had all the blood work ups, Immune testing, CT, MRI of body and spine etc etc, then found out I have a worsening NAFLD. So having some general health anxiety issues about what next, but at that stage always fairly optimistic that i would get it sorted.
In the bath one night and noticed some twitching in my thigh about 6 weeks ago, innocently googled reasons for twitching, and of course then my body lit up like a pinball machine with twitching in many sports. Fasics that hit me in my triceps, buttocks, arm and then mostly settled in the legs, especially the calf muscles. Also a lot of muscle stiffness from no where, namely lower back, hip, thighs, calves etc. Making it difficult to walk. No sure if I had perceived weakness or atrophy at this stage, but some numbness, slight tingling (small electric shock type feelings in legs) other fassic's I could just see, still can 24/7. Of course like many google worriers, self diagnosed myself ALS, given age etc. My partner had MS and I had recently had a brain scan, spinal scan and bloods so that was discounted.
Went to my DR some concerns, ie slightly hyper knee reflex on one leg, but better to be safe than sorry, Referred to nuero (maybe 6 weeks after body-wide twitching) He did a clinical exam and did not seem to find any real concerns only slight brisk relex again in my left leg and maybe some slower ones upper body, but could still get them. So sent me for EMG, and Nerve conduction. Again full clinical, ie testing muscle strength etc. Did the nerve tests on many parts, calves, thighs, triceps, neck, tongue etc. Did manage to get some of the fasics to pop and on screen. Seemed to think that all Ok and fasics benign. Thought that would calm me but problems remain.
A couple of things, how do they know the difference between a benign fasic, and an ALS one on EMG ? Can the EMG miss something if it was only 6 weeks from onset. If I was tested clinically by two experts plus the EMG and told I dont have ALS can I take that as more or less 100%. I know I could develop it like anyone, but given i have some symptoms would it always show as ALS or not.
Im sorry for long text but I get conflicting opinions as I realise unlike some diagnosis ie HIV, Cancers etc it is 100% you dont have it, ALS seems in a grey area depending on who or where you read. Have the EMG tests become more advanced than a few years ago. I dont have a family history of ALS but one of Parkinson's and Dementia. Just read some where here, clinical exam (despite brisk reflex) plus clean or normal EMG (with symptoms) means conclusively NO ALS?
Again I value input as i have used this site a lot of late. Thanking you in-advance.
Background, a few strange things going on this year for a previously healthy 60 year old, white male. Was in hospital for stomach ulcers, and had all the blood work ups, Immune testing, CT, MRI of body and spine etc etc, then found out I have a worsening NAFLD. So having some general health anxiety issues about what next, but at that stage always fairly optimistic that i would get it sorted.
In the bath one night and noticed some twitching in my thigh about 6 weeks ago, innocently googled reasons for twitching, and of course then my body lit up like a pinball machine with twitching in many sports. Fasics that hit me in my triceps, buttocks, arm and then mostly settled in the legs, especially the calf muscles. Also a lot of muscle stiffness from no where, namely lower back, hip, thighs, calves etc. Making it difficult to walk. No sure if I had perceived weakness or atrophy at this stage, but some numbness, slight tingling (small electric shock type feelings in legs) other fassic's I could just see, still can 24/7. Of course like many google worriers, self diagnosed myself ALS, given age etc. My partner had MS and I had recently had a brain scan, spinal scan and bloods so that was discounted.
Went to my DR some concerns, ie slightly hyper knee reflex on one leg, but better to be safe than sorry, Referred to nuero (maybe 6 weeks after body-wide twitching) He did a clinical exam and did not seem to find any real concerns only slight brisk relex again in my left leg and maybe some slower ones upper body, but could still get them. So sent me for EMG, and Nerve conduction. Again full clinical, ie testing muscle strength etc. Did the nerve tests on many parts, calves, thighs, triceps, neck, tongue etc. Did manage to get some of the fasics to pop and on screen. Seemed to think that all Ok and fasics benign. Thought that would calm me but problems remain.
A couple of things, how do they know the difference between a benign fasic, and an ALS one on EMG ? Can the EMG miss something if it was only 6 weeks from onset. If I was tested clinically by two experts plus the EMG and told I dont have ALS can I take that as more or less 100%. I know I could develop it like anyone, but given i have some symptoms would it always show as ALS or not.
Im sorry for long text but I get conflicting opinions as I realise unlike some diagnosis ie HIV, Cancers etc it is 100% you dont have it, ALS seems in a grey area depending on who or where you read. Have the EMG tests become more advanced than a few years ago. I dont have a family history of ALS but one of Parkinson's and Dementia. Just read some where here, clinical exam (despite brisk reflex) plus clean or normal EMG (with symptoms) means conclusively NO ALS?
Again I value input as i have used this site a lot of late. Thanking you in-advance.
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