Alexandre
Active member
- Joined
- Jun 2, 2009
- Messages
- 91
- Reason
- Learn about ALS
- Country
- FRA
- State
- Paris
- City
- Paris
Hi all,
Tomorrow I have an appointment with an ALS specialist after being observed by his assistants in November last year, who believe my progression and symptoms are worrisome for ALS.
Some of you will know I was here on the board a while ago and I was seen by multiple doctors who always said it was no ALS.
I even had an EMG that was normal except from fasciculations however I had atrophy in my right hand. I would like that people who don’t take me seriously to not respond please.
I would like to ask some questions about progression being quick, slow, new symptoms etc.
Quick recap:
3 years ago I started to have twitches in my legs that progressed to my arms etc a week later. Since than I got them everywhere. 2 years long it was fascics and cramping (no real Charlie horses) and pain in shoulder, arms that subsided sometimes after weeks or month with a lot of pain killers. MRI spine, brain, blookwork – Lyme, all have been tested. I also had a normal EMG with fasciculations 3 years ago.
In December 2009 I noticed a dent in my right hand (first dorsal interosseus) that I never saw before
February 2010: noticed non stop twitching in first dorsal interosseus, also a lot in the other hand
July 2010: started getting pain at my right ankle, severe pain.
August 2010: New EMG done: to my surprise only fasciculations noted. I was confused because I knew there was a dent that did progress, however not very hard. But ofcourse relieved.
November 2010: right foot/ankle still hurting and walking with brace, pain killers, digitorum brevis a lot smaller than other foot also loss of muscle just above ankle (lowest part of leg)
In the clinical they saw the atrophy, brisk reflexes with extension, Hoffman and said I should be seen by the ALS specialist (he was not there at that time and had to wait for a private appointment)
I’ve been trouh a lot of anxiety for the past 3 years so I guess somehow I also suffer from anxiety (disorder?) So my questions are about some symptoms related to ALS or not or progression.
For the record: I’m not saying I have ALS, I will leave it in the hands of the specialist but we know something went wrong during EMG, and as I have being told by people here the EMG is very subjective , not the machine but the errors made by the person who does it.
My situation now:-
1) Right hand: atrophy has progressed but I can still use my hands. Some problems with picking up small items. Atrophy first seen 13 months ago, it has progressed but not extremely.
Question: should it go faster in ‘regular’ ALS or is this normal progression?
2)Right foot: Still a lot of pain when walking. Pain killers ease the pain. Friends don’t see difference in walking when I take pain killers. Also weird pain in hamstrings. Also my foot often gets caught after a table leg or chair leg, carpet, but I don’t fall. But no dragging to see.
Question: it has been 7 months with this pain and akward walking that I feel, can still walk toes and heels. Slow progression?
3)Left hand and leg:
I noticed my muscle (1st dorsal interosseus) in left hand is also getting smaller.
Left leg, ankle gets sore when walking a distance.
4)Breathing: when talking I have to gasp for air. This is not always. But a few times a day.
I don’t have sleeping problems, but take Rivortril to sleep better.
5)Talking: I often say words wrong. Mixing letters. Also last week I couldn’t not say a specific word. I feel like I ‘sliss’ more often. Today feeling like slight throat pain
Tongue: I often feel zaps, tickling weird feelings in my tongue. But when I look in the mirror when my tongue is at complete rest in my mouth I see nothing moving. However when I stick it out I can see slight quivering in front of the tongue.
These are some of my symptoms also got : cramping (only 4 big cramps last year), shaking hand muscles when stretching in bed in the morning, twitching all over including lips, abdomen (new), since yesterday tremendous upper back pain left side (weakness?), ...
IF this is ALS what symptoms are related. Could some symptoms be due to anxiety?
Is it ‘normal’ in ALS to have affection in breathing, tongue, both hands and legs before diagnose? Also not one limb has been paralyzed. I still can use everything?
I know it’s a long thread but does someone have opinions?
Because IF it would be ALS I’m afraid it will progress quick from this point because it seems to be everywhere.
Does anyone have an insight on muscle wasting progression, my breathing , tongue thing, overall progression?
Thanks
Tomorrow I have an appointment with an ALS specialist after being observed by his assistants in November last year, who believe my progression and symptoms are worrisome for ALS.
Some of you will know I was here on the board a while ago and I was seen by multiple doctors who always said it was no ALS.
I even had an EMG that was normal except from fasciculations however I had atrophy in my right hand. I would like that people who don’t take me seriously to not respond please.
I would like to ask some questions about progression being quick, slow, new symptoms etc.
Quick recap:
3 years ago I started to have twitches in my legs that progressed to my arms etc a week later. Since than I got them everywhere. 2 years long it was fascics and cramping (no real Charlie horses) and pain in shoulder, arms that subsided sometimes after weeks or month with a lot of pain killers. MRI spine, brain, blookwork – Lyme, all have been tested. I also had a normal EMG with fasciculations 3 years ago.
In December 2009 I noticed a dent in my right hand (first dorsal interosseus) that I never saw before
February 2010: noticed non stop twitching in first dorsal interosseus, also a lot in the other hand
July 2010: started getting pain at my right ankle, severe pain.
August 2010: New EMG done: to my surprise only fasciculations noted. I was confused because I knew there was a dent that did progress, however not very hard. But ofcourse relieved.
November 2010: right foot/ankle still hurting and walking with brace, pain killers, digitorum brevis a lot smaller than other foot also loss of muscle just above ankle (lowest part of leg)
In the clinical they saw the atrophy, brisk reflexes with extension, Hoffman and said I should be seen by the ALS specialist (he was not there at that time and had to wait for a private appointment)
I’ve been trouh a lot of anxiety for the past 3 years so I guess somehow I also suffer from anxiety (disorder?) So my questions are about some symptoms related to ALS or not or progression.
For the record: I’m not saying I have ALS, I will leave it in the hands of the specialist but we know something went wrong during EMG, and as I have being told by people here the EMG is very subjective , not the machine but the errors made by the person who does it.
My situation now:-
1) Right hand: atrophy has progressed but I can still use my hands. Some problems with picking up small items. Atrophy first seen 13 months ago, it has progressed but not extremely.
Question: should it go faster in ‘regular’ ALS or is this normal progression?
2)Right foot: Still a lot of pain when walking. Pain killers ease the pain. Friends don’t see difference in walking when I take pain killers. Also weird pain in hamstrings. Also my foot often gets caught after a table leg or chair leg, carpet, but I don’t fall. But no dragging to see.
Question: it has been 7 months with this pain and akward walking that I feel, can still walk toes and heels. Slow progression?
3)Left hand and leg:
I noticed my muscle (1st dorsal interosseus) in left hand is also getting smaller.
Left leg, ankle gets sore when walking a distance.
4)Breathing: when talking I have to gasp for air. This is not always. But a few times a day.
I don’t have sleeping problems, but take Rivortril to sleep better.
5)Talking: I often say words wrong. Mixing letters. Also last week I couldn’t not say a specific word. I feel like I ‘sliss’ more often. Today feeling like slight throat pain
Tongue: I often feel zaps, tickling weird feelings in my tongue. But when I look in the mirror when my tongue is at complete rest in my mouth I see nothing moving. However when I stick it out I can see slight quivering in front of the tongue.
These are some of my symptoms also got : cramping (only 4 big cramps last year), shaking hand muscles when stretching in bed in the morning, twitching all over including lips, abdomen (new), since yesterday tremendous upper back pain left side (weakness?), ...
IF this is ALS what symptoms are related. Could some symptoms be due to anxiety?
Is it ‘normal’ in ALS to have affection in breathing, tongue, both hands and legs before diagnose? Also not one limb has been paralyzed. I still can use everything?
I know it’s a long thread but does someone have opinions?
Because IF it would be ALS I’m afraid it will progress quick from this point because it seems to be everywhere.
Does anyone have an insight on muscle wasting progression, my breathing , tongue thing, overall progression?
Thanks