TimeWillTell75
New member
- Joined
- Nov 16, 2014
- Messages
- 5
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- Other
- Country
- UK
- State
- London
- City
- London
Hi guys and gals.
Firstly I would like to say that over the last few months I have regularly visited this site, and read through some of the forums etc, and I have to say that I think the people here who have relatives / or are themselves going through this illness are so very brave and I salute each and every one of you.
Ok, so what brings me here. Well, I guess that’s pretty obvious.
I wanted to share my story with you (be warned, it’s going to be a long one) and hopefully receive some feed back as to what may, or may not be happening to me. I understand that none of you are doctors and can’t diagnose me as such, and I also know that each and every story is different with regards to diagnosis, but nonetheless it would be great to hear peoples opinion. It also would be great to talk to people who have similar symptoms as myself.
Ok, so, it all started around 8 months ago.
I started having many different symptoms, but the very first symptom I noticed was that I started to have random fasciculations over my body. The fascicultions at first were really only located in my legs, but over the space of a few weeks I started having them randomly all over my body - arms, legs, feet etc etc. Some were small twitches, others were great big thumping ones (could actually see them through my clothes).
One evening I closely examined my foot because it had a pins and needles sensation in it, and when I looked at it to my sheer horror it was as if I had worms crawling under my skin, and for about 5 minutes my little toe started to involuntarily move.
I tried magnesium/calcium and vitamin supplements but not really a lot changed, my muscles continued to twitch. Along with the fasciculations I had (and for the most part continue to have) many other symptoms, including - numbness in various parts of the body, limbs falling asleep at night, muscle cramps, tremors in fingers, sleeping problems (waking up every hour), extremely dry mouth during the night, voice changes (mostly hoarseness), a few problems when eating (e.g coughing fits when swallowing food) and urine frequency.
Because I suffer from IBS that also has been pretty severe at times with long episodes of diarrhea during all of this. I guess that long bouts of diarrhea is not at all related to any of this (or maybe it is) but I just thought I would mention it anyway.
After having those symptoms for a couple of months I stated seeing a neurologist, whom I still see now. He issued for me to have an EMG done which was carried out in May this year (which was 3 months after my symptoms first started) The EMG was carried out on my limbs only.
The comments that were made from the results of that EMG were as follows…
Apart from small CMAPs from right EDB, normal nerve conduction studies.
No evidence found for generalised peripheral neuropathy.
EMG from all sampled muscles showed occasional polybasic units and hints of rapid recruitment. These anomalies are rather a non-specific abnormality rather than a definite myo-pathic process, but it may be prudent to check CK, and consider muscle biopsy.
Well, my neurologist didn’t seem too concerned at the time, and didn’t really want to go down the muscle biopsy route, but because the ongoing persistent nature of my symptoms he referred me to a second neurologist to get a second opinion. Anyway, after seeing this second neurologist he also stated there was no immediate danger and told me I didn’t need a biopsy.
They both agreed for me to have a follow on EMG in 6 months time (November).
I did wonder if maybe i had my EMG to soon for things to show up, but i let the doctors/neurologists do their job and just agreed to have a repeat EMG in 6 months.
Ok, so fast forward to the here and now and many symptoms still persist, however I also have some new symptoms, some of which started a while ago and are really starting to concern me.
For a few months now I have been getting a constant build up of phlegm/mucus in my throat. I first noticed this happening when I woke up each morning, but now the phlegm/mucus is there all the time and I am constantly having to clear my throat. My local doctor when I seen him 3 months ago suspected post nasal drip. I have been given 3 different nasal sprays over the last 3 months but nothing seems to have worked. I have even had an ENT specialist 5 weeks ago put a tube/camera up through my nose and have a look down my throat, and he said apart from a redness around my epiglottis area everything looked ok. He gave me some gaviscon (which is for heartburn/indigestion) because he suspected I could be suffering from some sort of reflux. He also gave me a nasal spray, but yet again no luck in clearing the phlegm/mucus. Since my appointment with the ENT specialist I have also been experiencing some other throat/tongue/mouth issues which have really made me quite worried. I have noticed now that my throat and tongue is twitching a lot (these were two areas of my body that actually didn’t twitch until recently), I feel the throat twitches and can also induce them by either tapping on my throat or pushing my throat down firmly towards my chest then lifting my head back up. I don’t really feel the tongue twitches, but I can definitely see them. I’m waking up frequently at night with numbness in mouth/tongue, very dry mouth, some mild pain in the throat/neck, also a very tight feeling in the throat/neck which feels as if someone is squeezing it. I also continue to have some mild speech problems with hoarseness etc, and the odd slurred word, but nothing drastic.
I have to admit that all these symptoms have got me really worried about the possibility of Bulbar ALS, and what has made me even more concerned is that I had my second EMG 2 days ago and although every muscle that was tested on the machine was relatively quiet when the needle was inserted - just like my first EMG (no sound) but when the needle was stuck under my chin the machine made what I can only describe as a rather continuous rhythmic tapping noise (as if a tap had been left on and it was dripping) - maybe 2 drips/taps per second, and like I say it was very rhythmic. The noise only stopped once he took the needle out.
Everything I have read about those kind of noises during an EMG is bad. Is the information I have read about that correct?
Ok, so that’s my story.
I want to make it clear that I never have suffered with anxiety or anything like that in the past, but right now I am extremely concerned about these symptoms and I do feel anxious.
Unfortunately here in the UK you have to wait around 10 - 14 days for the results of an EMG.
My next appointment with my neurologist is on December 1st when he will go through the EMG results with me.
Basically, what I would like to know is does my story sound familiar with someone who has early signs of ALS. And also are the sounds I describe when the needle was inserted under my chin during the EMG a bad sign?
Thank you all for taking the time out to read my story.
I hope to hear from you guy/gals soon, and would appreciate it if you can be as honest as possible (good or bad) as I really need to know what I may be facing here.
May god bless you all.
Danny.
Firstly I would like to say that over the last few months I have regularly visited this site, and read through some of the forums etc, and I have to say that I think the people here who have relatives / or are themselves going through this illness are so very brave and I salute each and every one of you.
Ok, so what brings me here. Well, I guess that’s pretty obvious.
I wanted to share my story with you (be warned, it’s going to be a long one) and hopefully receive some feed back as to what may, or may not be happening to me. I understand that none of you are doctors and can’t diagnose me as such, and I also know that each and every story is different with regards to diagnosis, but nonetheless it would be great to hear peoples opinion. It also would be great to talk to people who have similar symptoms as myself.
Ok, so, it all started around 8 months ago.
I started having many different symptoms, but the very first symptom I noticed was that I started to have random fasciculations over my body. The fascicultions at first were really only located in my legs, but over the space of a few weeks I started having them randomly all over my body - arms, legs, feet etc etc. Some were small twitches, others were great big thumping ones (could actually see them through my clothes).
One evening I closely examined my foot because it had a pins and needles sensation in it, and when I looked at it to my sheer horror it was as if I had worms crawling under my skin, and for about 5 minutes my little toe started to involuntarily move.
I tried magnesium/calcium and vitamin supplements but not really a lot changed, my muscles continued to twitch. Along with the fasciculations I had (and for the most part continue to have) many other symptoms, including - numbness in various parts of the body, limbs falling asleep at night, muscle cramps, tremors in fingers, sleeping problems (waking up every hour), extremely dry mouth during the night, voice changes (mostly hoarseness), a few problems when eating (e.g coughing fits when swallowing food) and urine frequency.
Because I suffer from IBS that also has been pretty severe at times with long episodes of diarrhea during all of this. I guess that long bouts of diarrhea is not at all related to any of this (or maybe it is) but I just thought I would mention it anyway.
After having those symptoms for a couple of months I stated seeing a neurologist, whom I still see now. He issued for me to have an EMG done which was carried out in May this year (which was 3 months after my symptoms first started) The EMG was carried out on my limbs only.
The comments that were made from the results of that EMG were as follows…
Apart from small CMAPs from right EDB, normal nerve conduction studies.
No evidence found for generalised peripheral neuropathy.
EMG from all sampled muscles showed occasional polybasic units and hints of rapid recruitment. These anomalies are rather a non-specific abnormality rather than a definite myo-pathic process, but it may be prudent to check CK, and consider muscle biopsy.
Well, my neurologist didn’t seem too concerned at the time, and didn’t really want to go down the muscle biopsy route, but because the ongoing persistent nature of my symptoms he referred me to a second neurologist to get a second opinion. Anyway, after seeing this second neurologist he also stated there was no immediate danger and told me I didn’t need a biopsy.
They both agreed for me to have a follow on EMG in 6 months time (November).
I did wonder if maybe i had my EMG to soon for things to show up, but i let the doctors/neurologists do their job and just agreed to have a repeat EMG in 6 months.
Ok, so fast forward to the here and now and many symptoms still persist, however I also have some new symptoms, some of which started a while ago and are really starting to concern me.
For a few months now I have been getting a constant build up of phlegm/mucus in my throat. I first noticed this happening when I woke up each morning, but now the phlegm/mucus is there all the time and I am constantly having to clear my throat. My local doctor when I seen him 3 months ago suspected post nasal drip. I have been given 3 different nasal sprays over the last 3 months but nothing seems to have worked. I have even had an ENT specialist 5 weeks ago put a tube/camera up through my nose and have a look down my throat, and he said apart from a redness around my epiglottis area everything looked ok. He gave me some gaviscon (which is for heartburn/indigestion) because he suspected I could be suffering from some sort of reflux. He also gave me a nasal spray, but yet again no luck in clearing the phlegm/mucus. Since my appointment with the ENT specialist I have also been experiencing some other throat/tongue/mouth issues which have really made me quite worried. I have noticed now that my throat and tongue is twitching a lot (these were two areas of my body that actually didn’t twitch until recently), I feel the throat twitches and can also induce them by either tapping on my throat or pushing my throat down firmly towards my chest then lifting my head back up. I don’t really feel the tongue twitches, but I can definitely see them. I’m waking up frequently at night with numbness in mouth/tongue, very dry mouth, some mild pain in the throat/neck, also a very tight feeling in the throat/neck which feels as if someone is squeezing it. I also continue to have some mild speech problems with hoarseness etc, and the odd slurred word, but nothing drastic.
I have to admit that all these symptoms have got me really worried about the possibility of Bulbar ALS, and what has made me even more concerned is that I had my second EMG 2 days ago and although every muscle that was tested on the machine was relatively quiet when the needle was inserted - just like my first EMG (no sound) but when the needle was stuck under my chin the machine made what I can only describe as a rather continuous rhythmic tapping noise (as if a tap had been left on and it was dripping) - maybe 2 drips/taps per second, and like I say it was very rhythmic. The noise only stopped once he took the needle out.
Everything I have read about those kind of noises during an EMG is bad. Is the information I have read about that correct?
Ok, so that’s my story.
I want to make it clear that I never have suffered with anxiety or anything like that in the past, but right now I am extremely concerned about these symptoms and I do feel anxious.
Unfortunately here in the UK you have to wait around 10 - 14 days for the results of an EMG.
My next appointment with my neurologist is on December 1st when he will go through the EMG results with me.
Basically, what I would like to know is does my story sound familiar with someone who has early signs of ALS. And also are the sounds I describe when the needle was inserted under my chin during the EMG a bad sign?
Thank you all for taking the time out to read my story.
I hope to hear from you guy/gals soon, and would appreciate it if you can be as honest as possible (good or bad) as I really need to know what I may be facing here.
May god bless you all.
Danny.