Benedikt
New member
- Joined
- May 24, 2016
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- BE
- State
- BC
- City
- Antwerp
Hello, this is my first time posting on this website and I would like to thank you in advance for reading (or reacting) to my story. Forgive me if my grammar isn’t the best, I’m from Belgium so English is not my native tongue / mother language.
I have symptoms for the past 8 months that are making me think (and scared) of a MND. I haven’t felt better for a day and it seems to slowly decline physically. I wonder if any of the things I wrote sound familiar to you.
Needless to say, I read that certain information comes in handy, here you go:
Age: 36
Sex: Male
Type: I was active (different sports) from my youth at a high level. I loved to do that. Right now I’m inactive since the problems with my body occurred.
Symptoms (In order of onset):
- I had muscle aches for months on end, they were the worst when I got out of bed. Primarily limbs and neck. I always thought it was due to physical exercise, but after I tore off a ligament in my hand and stopped playing sports I still had the same aches everyday.
- Later on I had a slumbering pain in my groin area and pain in testicles which later got numb and have been ever since (this could be unrelated). I still don’t feel anything but the neurologist didn’t seem to be to bothered about this.
- Numbness of certain muscles (I can feel my skin – sharp and stump, but I can’t feel my calve muscles well if I push or squeeze them)
- Cramp in my hands.
- Arms, legs and neck feel weak and have been for a number of months (there was not a day that it felt better).
- Exercise intolerant (after trying jogging for a short while I’m easily fatigued, the places where tendons are attached start hurting and sleeping gets deprived after activity by more tingling and fasciculations)
- I didn’t measure but my calves seem to have become smaller, as well as my arms.
- Fasciculations started 4 weeks ago, they are 24/7 in both my calves, they are wormlike and fast all over and do not hurt but tingle.
- There are fasciculations all over the rest of my body but they are not continuous. They come and go.
- The side of my hand sometimes pulls in and moves like a slow fasciculation (like it is sucked into the hand)
- Since a week there’s a rather big dent in my upper leg that wasn’t there before. It is there, no question about it. My GP / family / friends / collegaes say so too. The neurologist hasn’t seen this yet because I didn’t notice it until last week.
Research:
- MRI of head and lower back (came back clean)
Full MRI of my neck and back wasn’t completed due to claustrophobia
- Lumbal puncture (came back clean)
- Wide range of blood results came back clean, and they tested on a lot of things.
There was just one odd thing: Vitamin D 25OH - vit D2+3 was 26 nmol/L where a healthy result would be 75-250 nmol/L)
- Of course the neurologist did some physical testing to see if I could do a calf raise, walk in a straight line, touch my nose with my finger, pull my arms etc. Although I can still do calf raises and bent my legs, I seem to tremble. Just like typing or grabbing something looks to be a little different. But because there’s more focus on it, you tend to look for things. The neurologist saw the fasciculations and asked if I felt weak. I explained that I read about clinical and perceived weakness and that I didn’t know which one it was, because I can still stand on my toes etc. So he ordered the EMG.
- EMG results were:
Neurography: N. ulnaris (arm) - m. abductor digiti minimi (hand where the skin gets “sucked in”) left: MNCV is borderline good/bad.
Needle myography: Fasciculations in m. gastrocnemius (calf) right. Signs of reinnervation in m. tibialis anterior (shin muscle) right.
I have been in and out the hospital seeing multiple neurologists. One thought the numbness in my muscles could be herpes. But it didn’t turn out to be that. They excluded MS as well. But now I’m in limbo and don’t know what to think. I got another appointment at the neurologist office but feel real nervous about it. This neurologist is specialized in ALS and other MND’s.
Could anybody tell me if this is anything resembling their illness and maybe give me some extra energy to face this.
Much appreciated.
I have symptoms for the past 8 months that are making me think (and scared) of a MND. I haven’t felt better for a day and it seems to slowly decline physically. I wonder if any of the things I wrote sound familiar to you.
Needless to say, I read that certain information comes in handy, here you go:
Age: 36
Sex: Male
Type: I was active (different sports) from my youth at a high level. I loved to do that. Right now I’m inactive since the problems with my body occurred.
Symptoms (In order of onset):
- I had muscle aches for months on end, they were the worst when I got out of bed. Primarily limbs and neck. I always thought it was due to physical exercise, but after I tore off a ligament in my hand and stopped playing sports I still had the same aches everyday.
- Later on I had a slumbering pain in my groin area and pain in testicles which later got numb and have been ever since (this could be unrelated). I still don’t feel anything but the neurologist didn’t seem to be to bothered about this.
- Numbness of certain muscles (I can feel my skin – sharp and stump, but I can’t feel my calve muscles well if I push or squeeze them)
- Cramp in my hands.
- Arms, legs and neck feel weak and have been for a number of months (there was not a day that it felt better).
- Exercise intolerant (after trying jogging for a short while I’m easily fatigued, the places where tendons are attached start hurting and sleeping gets deprived after activity by more tingling and fasciculations)
- I didn’t measure but my calves seem to have become smaller, as well as my arms.
- Fasciculations started 4 weeks ago, they are 24/7 in both my calves, they are wormlike and fast all over and do not hurt but tingle.
- There are fasciculations all over the rest of my body but they are not continuous. They come and go.
- The side of my hand sometimes pulls in and moves like a slow fasciculation (like it is sucked into the hand)
- Since a week there’s a rather big dent in my upper leg that wasn’t there before. It is there, no question about it. My GP / family / friends / collegaes say so too. The neurologist hasn’t seen this yet because I didn’t notice it until last week.
Research:
- MRI of head and lower back (came back clean)
Full MRI of my neck and back wasn’t completed due to claustrophobia
- Lumbal puncture (came back clean)
- Wide range of blood results came back clean, and they tested on a lot of things.
There was just one odd thing: Vitamin D 25OH - vit D2+3 was 26 nmol/L where a healthy result would be 75-250 nmol/L)
- Of course the neurologist did some physical testing to see if I could do a calf raise, walk in a straight line, touch my nose with my finger, pull my arms etc. Although I can still do calf raises and bent my legs, I seem to tremble. Just like typing or grabbing something looks to be a little different. But because there’s more focus on it, you tend to look for things. The neurologist saw the fasciculations and asked if I felt weak. I explained that I read about clinical and perceived weakness and that I didn’t know which one it was, because I can still stand on my toes etc. So he ordered the EMG.
- EMG results were:
Neurography: N. ulnaris (arm) - m. abductor digiti minimi (hand where the skin gets “sucked in”) left: MNCV is borderline good/bad.
Needle myography: Fasciculations in m. gastrocnemius (calf) right. Signs of reinnervation in m. tibialis anterior (shin muscle) right.
I have been in and out the hospital seeing multiple neurologists. One thought the numbness in my muscles could be herpes. But it didn’t turn out to be that. They excluded MS as well. But now I’m in limbo and don’t know what to think. I got another appointment at the neurologist office but feel real nervous about it. This neurologist is specialized in ALS and other MND’s.
Could anybody tell me if this is anything resembling their illness and maybe give me some extra energy to face this.
Much appreciated.
