fredrik
Member
- Joined
- Apr 29, 2008
- Messages
- 16
- Reason
- Learn about ALS
- Country
- swe
- State
- sweden
- City
- malmoe
Hi everyone and happy new year!
i've been reading this forum now and then for 6 month and love to you all, you seem to have big hearts and thats what counts in life!
sorry if this is going to be a long story, but i'm very worried about my symptoms and would like to give as clear picture as possible.
i would really apriciate some feedback. Especially from Mr.Wright if you have time reading this.
summer 2007
starting to have some twithes in my right pointingfinger.
dec 2007
starting to feel strange tension at night in my legs.
jan 2007
little shaking in fingers and often remarkable tiredness in legmuscles.
feb 2007
my masseur told me i was little stiff in right shoulder.
went to my local doctor who told me probably stress.
mar 2007
some strange "pulsning" in legs and arms, not visible.
apr 2007
shoulders, neck and legs i a little bit smaller.
some sensations under my tounge and sometimes trouble with the letter S.
can feel some subjective weakness in legs.
also some very light cramps a little bit everywhere.
some visible twitches in fingers and big toes, both sides.
visit neuro nr1, suspects MND after clinical, after all bloodwork and EMG she says no NMD.visit shrink who sais no stress.
may 2007
some light pain in shoulders, mostly right.
backpain now and then.
visible twitches, very local, 3-10 sec, mostly legs.
some stiffness in face muscles.
visit neuro nr 2, suspects MG after clinical, new EMG also in tongue, rules out MG, probably no ALS
june 2007
more of all symptoms.
very light pain sometimes in knees and ancles.
my wife can now confirm i'm thinner around legs, arms and neck.
my right hand most thinner.
some weakness in my hands according to trainer, but still normal.
visit neuro nr 3 (als-specialist) who does clinical, MEP, LP, EMG and all bloodwork. he said no signs of ALS, but only time can definitly exclude ALS. don't worry
jul 2007
often some ache in feets, ancles, legs and hands.
trouble training, strange pain, my trainer confused.
now also sometimes small trouble with articulation.
aug 2007
very tired in shoulders when i hold a phone or eat etc.
more visible twithes.
sep 2007
most clearly is the smaller shoulders.
all symptoms a little bit worse in the right side of body but left side in face.
bloodcirculation not as usual.
also pretty often twithes in lowerlip.
neuro nr 1 calls in their neuromusculear specialist, says no neurologic desease but we should do MRI, ALS would progress faster.
okt
same symptoms but more ache, more weakness and also some trouble stretching fingers.
neuro nr 2 can't find anything to worrie about, says smaller muscles is hard to see and he will be surprized if this will end up with ALS. countinues with MRI and sends me also to reumath.
nov 2007
almost constant very local twitching, diffrent places everytime, more often my right side.
almost constant light cramps.
trying to train but keep being slowly weaker.
do the MRI, head and back.
dec 2007
same but little bit worse of every symptom.
especially weakness in back, shoulders and calfs.
neuro nr 1 gets the result of MRI, calls me and says stop thinking of ALS, i would like to see you in a year, we have done everything know, we have to wait and see.
So i'm waiting for neuro nr 2 and his opinion, they all seem to think this is no big deal.
Most of my symptoms has accelerated last 2-3 month.
also they found some small signs at fist EMG between right thumb and pointingfinger in april, some sign of desease in my spinal liquid in june, some degenerative changes in spine and changes in frontallobe in november in the MRI.
I trust my neuros but i've read about many people who gone throug similar pattern and then after 2-3 year gets the diagnose.
Also i'm getting slowly worse (smaller muscles, weaker, more twitching and ache) and they have tested me for everything! to me it sounds like classic ALS, when nothing is found and symptoms getting worse, eventually you end up with ALS.
My concerns is mostly if i went to soon to neuros and thats why they couldn't find enough signs to suspect ALS?
Or is my symptom still not gone that long so they could be turned in to objective signs for neuros, and thats why they tell me don't worry?
Or maybe they after excluding everything else now suspects ALS but wait for progression before informing me about this is probably ALS?
Thank you all for feedback and your own experience with diagnose and symptoms!
Fredrik
i've been reading this forum now and then for 6 month and love to you all, you seem to have big hearts and thats what counts in life!
sorry if this is going to be a long story, but i'm very worried about my symptoms and would like to give as clear picture as possible.
i would really apriciate some feedback. Especially from Mr.Wright if you have time reading this.
summer 2007
starting to have some twithes in my right pointingfinger.
dec 2007
starting to feel strange tension at night in my legs.
jan 2007
little shaking in fingers and often remarkable tiredness in legmuscles.
feb 2007
my masseur told me i was little stiff in right shoulder.
went to my local doctor who told me probably stress.
mar 2007
some strange "pulsning" in legs and arms, not visible.
apr 2007
shoulders, neck and legs i a little bit smaller.
some sensations under my tounge and sometimes trouble with the letter S.
can feel some subjective weakness in legs.
also some very light cramps a little bit everywhere.
some visible twitches in fingers and big toes, both sides.
visit neuro nr1, suspects MND after clinical, after all bloodwork and EMG she says no NMD.visit shrink who sais no stress.
may 2007
some light pain in shoulders, mostly right.
backpain now and then.
visible twitches, very local, 3-10 sec, mostly legs.
some stiffness in face muscles.
visit neuro nr 2, suspects MG after clinical, new EMG also in tongue, rules out MG, probably no ALS
june 2007
more of all symptoms.
very light pain sometimes in knees and ancles.
my wife can now confirm i'm thinner around legs, arms and neck.
my right hand most thinner.
some weakness in my hands according to trainer, but still normal.
visit neuro nr 3 (als-specialist) who does clinical, MEP, LP, EMG and all bloodwork. he said no signs of ALS, but only time can definitly exclude ALS. don't worry
jul 2007
often some ache in feets, ancles, legs and hands.
trouble training, strange pain, my trainer confused.
now also sometimes small trouble with articulation.
aug 2007
very tired in shoulders when i hold a phone or eat etc.
more visible twithes.
sep 2007
most clearly is the smaller shoulders.
all symptoms a little bit worse in the right side of body but left side in face.
bloodcirculation not as usual.
also pretty often twithes in lowerlip.
neuro nr 1 calls in their neuromusculear specialist, says no neurologic desease but we should do MRI, ALS would progress faster.
okt
same symptoms but more ache, more weakness and also some trouble stretching fingers.
neuro nr 2 can't find anything to worrie about, says smaller muscles is hard to see and he will be surprized if this will end up with ALS. countinues with MRI and sends me also to reumath.
nov 2007
almost constant very local twitching, diffrent places everytime, more often my right side.
almost constant light cramps.
trying to train but keep being slowly weaker.
do the MRI, head and back.
dec 2007
same but little bit worse of every symptom.
especially weakness in back, shoulders and calfs.
neuro nr 1 gets the result of MRI, calls me and says stop thinking of ALS, i would like to see you in a year, we have done everything know, we have to wait and see.
So i'm waiting for neuro nr 2 and his opinion, they all seem to think this is no big deal.
Most of my symptoms has accelerated last 2-3 month.
also they found some small signs at fist EMG between right thumb and pointingfinger in april, some sign of desease in my spinal liquid in june, some degenerative changes in spine and changes in frontallobe in november in the MRI.
I trust my neuros but i've read about many people who gone throug similar pattern and then after 2-3 year gets the diagnose.
Also i'm getting slowly worse (smaller muscles, weaker, more twitching and ache) and they have tested me for everything! to me it sounds like classic ALS, when nothing is found and symptoms getting worse, eventually you end up with ALS.
My concerns is mostly if i went to soon to neuros and thats why they couldn't find enough signs to suspect ALS?
Or is my symptom still not gone that long so they could be turned in to objective signs for neuros, and thats why they tell me don't worry?
Or maybe they after excluding everything else now suspects ALS but wait for progression before informing me about this is probably ALS?
Thank you all for feedback and your own experience with diagnose and symptoms!
Fredrik