Hi
New member here
I am currently awaiting diagnosis and in a bit of a state. Ive lost a stone in weight in a month even though im eating 3 meals a day. Not sleeping at all with worry for the future. Im Depressed and anxious. Im male, 50 from yorkshire.
My journey starts 2.5 years ago. I noticed slight weakness in both thighs when i raised out of a chair and walked upstairs. Soon afterwards when doing some decorating i noticed my arms felt weak. I also tried picking up a box of floor tiles and i just couldnt do it. My arms werent strong enough to raise the box and my thighs just didnt have the strength to lift it. It wasnt that heavy and my daughters boyfriend lifted it fine. I had an mri on my thighs and they were normal.
My right leg looked slightly thinner than my left even back then.
2 years ago i had an emg. 1 leg muscle, 1 arm muscle. It was normal. But i knew something wasnt right. Im convinced the emg was not done on a wasting muscle or wasnt interpretted correctly. Can it be done too early?
18 months ago i saw a neurologist. He took some measurements of my leg muscles sizes and noted that both ankle jerks and both bicep reflexs were absent. He could see there was wastage in both arms and my right leg. In convonced My brachialis muscle in both arms had totally atrophied. My grip was very good and thumb muscle fine.
Covid kicked in so it didnt get to see the neuro again until dec 2020. He said my reflexs were still absent, babinski was ok, he noted my right thigh had reduced in size from the last examination by 1cm. He could also see my shins and ankles now just skin and bone. I could still go onto my tiptoes and heels fine though.
He didnt take any arm measurements but i was able to show him that my arm muscles were thinner and weaker. He originally just wanted to see me again in 6 months as he said absent reflexs didnt normally point to als. He admitted i am showing lmn signs with weakness and wastage, but no spasticity, babinski or hyperreflexs in any muscles so currently no umn. Ive rang him as i need more tests and demanded either a 2nd opinion or an emg as lmn signs only can still mean pma which may change to als later.
Jump to today. I seem to have gotten worse quite quickly since the new year. My right arm is now weaker. I am getting what i perceive as an aching pain in that arm. I dont have any pain when its resting. For example, when i pick up a kettle full with water i get a pain that shoots up my wrist and forearms. I think my forearms are too weak but my grip is very strong so im able to hold on to the kettle but my weak and wasted forearms are struggling to hold it up so im getting a pain.
Im also getting an aching pain in my right bicep when i move them or hold something with any weight to it. My grip is both hands is unaffected, i have a very good grip and have no problem grabbing and holding anything. The muscles under and around the thumb is still meaty in both hands. Can you have weak forearms but a very good grip?
I have never had any twitches in all the 2.5 years or had any bulbar problems at all.
So i have some weakness in all 4 limbs and wastage in at least 3 but especially now in my right arm. My right bicep is a little smaller and spongey compared to my left.
I still think im early stage even though it was 2.5 years from perceived weakness and 1.5 years from definite wastage. There isnt anything i cant do. No muscle has "failed" and to be fair although my legs are now stick thin i can still walk upstairs fine and go onto my tiptoes ok. I must state though that i seem to be acelerating.
Im convinced its a form of mnd. Maybe pma as i only have lmn for now. I have pics where my arms are much thinner than before and this right arm is now very weak.
So in summary
Wastage in at least 3 limbs. Right bicep feels spongey and no tone compated to left.
Perceived weakness in all 4 limbs and mostly in right arm where i am now very weak with an aching/pain when i use it.
no muscle has "failed". No foot drop or cant turn a key.
Very thin and boney shins and ankles, i can see my shin bone sticking out all the way down in both legs.
No twitches
No bulbar symptoms
Internal tremors throughout my body
Good grip and no thinning of thumb muscles.
Emg 2 years ago came back normal that i now think was either done too early, on incorrect muscle or incorrectly read. They are not 100% are they?
Lost a stone in a month even though im eating.
New member here
I am currently awaiting diagnosis and in a bit of a state. Ive lost a stone in weight in a month even though im eating 3 meals a day. Not sleeping at all with worry for the future. Im Depressed and anxious. Im male, 50 from yorkshire.
My journey starts 2.5 years ago. I noticed slight weakness in both thighs when i raised out of a chair and walked upstairs. Soon afterwards when doing some decorating i noticed my arms felt weak. I also tried picking up a box of floor tiles and i just couldnt do it. My arms werent strong enough to raise the box and my thighs just didnt have the strength to lift it. It wasnt that heavy and my daughters boyfriend lifted it fine. I had an mri on my thighs and they were normal.
My right leg looked slightly thinner than my left even back then.
2 years ago i had an emg. 1 leg muscle, 1 arm muscle. It was normal. But i knew something wasnt right. Im convinced the emg was not done on a wasting muscle or wasnt interpretted correctly. Can it be done too early?
18 months ago i saw a neurologist. He took some measurements of my leg muscles sizes and noted that both ankle jerks and both bicep reflexs were absent. He could see there was wastage in both arms and my right leg. In convonced My brachialis muscle in both arms had totally atrophied. My grip was very good and thumb muscle fine.
Covid kicked in so it didnt get to see the neuro again until dec 2020. He said my reflexs were still absent, babinski was ok, he noted my right thigh had reduced in size from the last examination by 1cm. He could also see my shins and ankles now just skin and bone. I could still go onto my tiptoes and heels fine though.
He didnt take any arm measurements but i was able to show him that my arm muscles were thinner and weaker. He originally just wanted to see me again in 6 months as he said absent reflexs didnt normally point to als. He admitted i am showing lmn signs with weakness and wastage, but no spasticity, babinski or hyperreflexs in any muscles so currently no umn. Ive rang him as i need more tests and demanded either a 2nd opinion or an emg as lmn signs only can still mean pma which may change to als later.
Jump to today. I seem to have gotten worse quite quickly since the new year. My right arm is now weaker. I am getting what i perceive as an aching pain in that arm. I dont have any pain when its resting. For example, when i pick up a kettle full with water i get a pain that shoots up my wrist and forearms. I think my forearms are too weak but my grip is very strong so im able to hold on to the kettle but my weak and wasted forearms are struggling to hold it up so im getting a pain.
Im also getting an aching pain in my right bicep when i move them or hold something with any weight to it. My grip is both hands is unaffected, i have a very good grip and have no problem grabbing and holding anything. The muscles under and around the thumb is still meaty in both hands. Can you have weak forearms but a very good grip?
I have never had any twitches in all the 2.5 years or had any bulbar problems at all.
So i have some weakness in all 4 limbs and wastage in at least 3 but especially now in my right arm. My right bicep is a little smaller and spongey compared to my left.
I still think im early stage even though it was 2.5 years from perceived weakness and 1.5 years from definite wastage. There isnt anything i cant do. No muscle has "failed" and to be fair although my legs are now stick thin i can still walk upstairs fine and go onto my tiptoes ok. I must state though that i seem to be acelerating.
Im convinced its a form of mnd. Maybe pma as i only have lmn for now. I have pics where my arms are much thinner than before and this right arm is now very weak.
So in summary
Wastage in at least 3 limbs. Right bicep feels spongey and no tone compated to left.
Perceived weakness in all 4 limbs and mostly in right arm where i am now very weak with an aching/pain when i use it.
no muscle has "failed". No foot drop or cant turn a key.
Very thin and boney shins and ankles, i can see my shin bone sticking out all the way down in both legs.
No twitches
No bulbar symptoms
Internal tremors throughout my body
Good grip and no thinning of thumb muscles.
Emg 2 years ago came back normal that i now think was either done too early, on incorrect muscle or incorrectly read. They are not 100% are they?
Lost a stone in a month even though im eating.