gotobass
New member
- Joined
- Jan 13, 2016
- Messages
- 3
- Reason
- Learn about ALS
- Country
- DE
- State
- Hessen
- City
- Frankfurt
Hello everybody, I was struggling for some time should I even ask here or not since I'm quite worried.
Im 28 (29 next month). My problems started beginning of September 2015. I was in the hospital for 10days following a pain in the left eye that was defined as Optic Neuritis. Together with the pain in the eye I developed a weakness in my left ankle and left wrist. In the hospital did all sorts of tests for autoimmune diseases (head, neck mri, lumbar puncture etc...) and I was treated with 1000 mg of Prednisone for 3 days. I was discharged with a diagnosis of idiopathic optic neuritis.
In the next months I started to have fasciculations and twitches first in my calves but now everywhere in my body. My left side of the tongue is a bit atrophied as is also a muscle on my left arm which also hurts near the elbow.
In the past month I have been having more and more problems with breathing and (not sure) swallowing. On Monday I have an appointment with a pulmologist. I can't sleep flat any more.
I had two emgs, last one about a month ago but the doctor only tested my right arm and leg. Both were clear. I did have some nerve conduction studies done on my left arm and it showed some slowing in the conduction speed.
I'm tired easily but can still walk pretty normal and use both my hands. Left one feels weaker and I believe there is muscle loss. The muscles on my entire body feel very stiff.
I was to several neurologists. All of them tell me my problems do not point to als but to some inflammation from a virus. I was just checked a few days ago and was also told it's something else. I was tested positive with Epstein Barr virus and the infection was active three months ago. I did have a short two day fever and flu like symptoms around two weeks before my eye problems started. My eye is now fine and all the docs say it's for sure not MS.
I'm really confused and scared. My docs have other ideas but I'm getting worse and no help in sight. If someone could give me an idea or share some experience that would be great. Thank you all and sorry for the long post.
Im 28 (29 next month). My problems started beginning of September 2015. I was in the hospital for 10days following a pain in the left eye that was defined as Optic Neuritis. Together with the pain in the eye I developed a weakness in my left ankle and left wrist. In the hospital did all sorts of tests for autoimmune diseases (head, neck mri, lumbar puncture etc...) and I was treated with 1000 mg of Prednisone for 3 days. I was discharged with a diagnosis of idiopathic optic neuritis.
In the next months I started to have fasciculations and twitches first in my calves but now everywhere in my body. My left side of the tongue is a bit atrophied as is also a muscle on my left arm which also hurts near the elbow.
In the past month I have been having more and more problems with breathing and (not sure) swallowing. On Monday I have an appointment with a pulmologist. I can't sleep flat any more.
I had two emgs, last one about a month ago but the doctor only tested my right arm and leg. Both were clear. I did have some nerve conduction studies done on my left arm and it showed some slowing in the conduction speed.
I'm tired easily but can still walk pretty normal and use both my hands. Left one feels weaker and I believe there is muscle loss. The muscles on my entire body feel very stiff.
I was to several neurologists. All of them tell me my problems do not point to als but to some inflammation from a virus. I was just checked a few days ago and was also told it's something else. I was tested positive with Epstein Barr virus and the infection was active three months ago. I did have a short two day fever and flu like symptoms around two weeks before my eye problems started. My eye is now fine and all the docs say it's for sure not MS.
I'm really confused and scared. My docs have other ideas but I'm getting worse and no help in sight. If someone could give me an idea or share some experience that would be great. Thank you all and sorry for the long post.
