Need input on my situation

Status
Not open for further replies.

gjviken

New member
Joined
Mar 25, 2021
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
SW
State
SW
City
Stockholm
Hi,

I need some input on my troublesome situation that cannot get out of my head. Something feels extremely weird but I have not been able to figure out what yet, hopefully it is nothing. I am a 29 year old male with a strong background within sports and have always been in good shape playing hockey, going to the gym, XC skiing etc. Short summary below of my latest 13 months:

January 2020: I started feeling a bit weird when talking and that people asked me to repeat what I said much more than before. My girlfriend did not agree on this however.
February 2020: I sat on my desktop job and suddenly felt that I could not breath correctly, all very shallow and it felt like a tight rubber band around my chest. I contacted the GP right away and they checked CT scan for the lungs (with and without contrast), spirometry and some other tests. All came back normal but still this feeling.
March 2020: I felt a weird numbing feeling in my foot and contacted the GP again. They checked for B12 deficiency (OK), MRI (without contrast) brain, spine and neck to check for MS etc. (OK), complete blood scan (also OK but a bit high in iron hence eating iron supplement a couple of months before).
April 2020: The numbing feeling runs over the whole body, in one day I could feel it in the stomach, feet, hands, face, neck etc. Just hopping around.
May-June 2020: Breathing still as bad as Feb 2020 and the numbing keeps going on. I had a couple of weeks with stiff muscles in my forearms without any explanation, but that subsided after approx. 2 weeks. I got an EMG in June where they tested some muscles in my right leg since I told them the leg felt strange and not "keeping along" as it should, e.g. it felt "slow" when playing tennis etc. The EMG came back showing no acute denervation but some old damage that they thought was connected to an old herniated disc. I also made the ENeG which came back completely normal.
July 2020: Numbing still there and right leg feels weird. No loss in strength or so. Have stopped stamina work due to the bad breathing but still strong at the gym.
August 2020: No new symtoms but old ones still there.
September-December 2020: Same.
January 2021: Breathing still as bad as one year ago. Numbing feeling still there especially in the right leg. Muscle twitching started that I could see in the feet, arms, hands etc. Short but fast "pulsing" that kept on for like 5 seconds and then subsided. Have also felt this in my glutes. I also think it looks like my right thigh (quadriceps) looks a bit smaller than the left leg. I have a dominant left side and played soccer, hockey etc. using that side more so maybe could be that but I think there is a clear difference. I told this to the neurologist too but he said that is not muscle wasting.
February-March 2021: Tried anxiety courses (this is absolutely not the case, but I gave it a go anyway since many doctors have mentioned this could be the problem). Also took Escitalopram with no effect. I got a strange feeling of sore and stiff right calf without explanation. Felt like I had been working out really hard, which I had not, and only for the right calf. It looked stiff and larger than the left one as well. This subsided after a couple of days.

Now it has been over a year and my breathing is really annoying me, it is not getting any better at all. I have a really weird feeling in my right leg that is hard to explain, it feels "off" when I walk and sort of a light numbness is present. Like a burning sensation in the thigh all the time. Some days I have muscle twitching but I do not think it is present every day. I keep on going to the gym and have not noticed any weakness at all despite the weird feeling in my leg, the twitching etc.

Does this sound like ALS? Or should it progress faster over a year if it is ALS? I have just started my own business that is going really great, have a wonderful girlfriend, friends etc. and everything in life is just top except this, which annoys me so bad. I need some advice.

Thanks.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,955
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
No, this does not sound like ALS, even slowly-progressing ALS. I am curious if you have had a PT or physical medicine evaluation to consider issues such as costochondritis. Massage, maybe therapeutic ultrasound, if/when that's safe for you in the midst of the pandemic, is another thought. The EMG findings of chronic denervation may support that.

I'm happy that you have been able to pursue your dreams despite these symptoms. Your mind is very powerful and can get you through quite a bit physically. The good news is that this doesn't resemble ALS or anything like it.

Best,
Laurie
 

gjviken

New member
Joined
Mar 25, 2021
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
SW
State
SW
City
Stockholm
Thanks for your reply Laurie.

I have not had a PT of physical medicine evalutation but I will sure do. I will also try massage. I am open to anything that could mitigate/erase these symptoms.

What do you mean that the EMG findings of chronic denervation may support that? Do you point on the costochondritis?

Many thanks for your advices.

Best
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,955
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Chronic denervation suggests an old or nagging injury or condition, many of which can be helped by physio, yes. Costo is just one possibility. That is why you should be evaluated.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
You keep mentioning your breathing. Have you had a pulmonary function test to see if your numbers are within normal range. Breathing issues can be all kinds of things, including asthma and allergies.

None of what you posted makes me think that ALS is in the picture.
 

gjviken

New member
Joined
Mar 25, 2021
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
SW
State
SW
City
Stockholm
Thanks for your reply.

Yes, I have had pulmonary function tests and x-rays for the lungs etc. and all seems to be normal..
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Good. You're in the clear. Anxiety can cause shortness of breath.
 
Status
Not open for further replies.
Top