Status
Not open for further replies.

Dirk

Member
Joined
Dec 1, 2009
Messages
10
Reason
Learn about ALS
Country
NL
State
Noord-Holland
City
Amsterdam
Hi everyone,

I would like to present my case to you as I am experiencing extreme panic and anxiety. And I am wondering if an infection can be the cause of ALS/MND or if other infections can mimic the symptoms..?

Here's my case:

Last february I started a new job in an very dirty building. The airconditioning wasn't cleaned for over twelve years while it should have been done every year. One person even had an air cleaning tool near her desk(crazy situation). Unluckyly I had cut myself that morning while going to work. I left the wound untreated(dummy) and went working. The second day I started to feel sick. Coughing, red face etc.

After three days I really couldn't stay inside that building anymore. It was an eight story building of wich only ours was in use. Many people were complaining of coughing, red faces, unable to think clearly etc. And to make matters worse, there was a story of a guy who had died from ALS/MND..very sad..This guy had been working and sleeping for quite some while in this building. Then he started to have trouble walking and was tired. Four months later he had died...very quickly in for ALS/MND in my point of view. Ofcourse I don't know any more specifics on his illness and maybe he had been sick much longer.

I have quit the job after a week because I couldn't stay in this building any longer. Then came a period where I feld extremely tired(six weeks, slept up to 16 hours) and I developed a twitch in my right hand(Thumb). I didn't pay a lot of attention to it. But it was persistent and slowly spread to other places. Then I started reading about ALS and got really scared. I went to a neurologist. They did send me home after some tests but no EMG. They told me I should return if the situation got worse.

Then came a period where I had to use Depakine(valproaat for an other disorder), and this covered my twitches, on hinside. In October I stopped using Depakine and there were the twiches and fasculations all over my body. Sometimes when I lie in bed my leggs kick due to the havy fascs. Also shoulders shake heavily sometimes. I also am really tired the last three weeks(sleeping up to 16 hours a day again)

It has been ten months since I have left this nasty building and I am convinced I have been infected in this building, most likely because of the wound on my hand. Other people exept the one(who died) are still doing o.k. The firm has only recently left this building and moved to a clean one.

I am freaking out at the moment. I am twitching all day and since a week I am experiencing a heavy feeling in my legs, especially my right leg. Sometimes it hurts a bit in my calves(muscle ache) am twitching in all extremeties including, back, sides and shoulders. My G.P. has send me back to the neurologist. As I have red a lot about ALS/MND and I am really scared at this point..But still I am convinced that what I have is due to an infection in that building.

My G.P. has done a quite extensive bloodwork. But until now hasn't found the real cause. I have an appointement in two weeks at the neuro where they will probably make an EMG.. This is a long time for me because my leggs are feeling more heavy every day. Also the story of the man who had died so quick in this building really make me scared..

If anyone has any suggestions on the part of the theory of infection, or what should be done next, I would really appriciate it. Is there anything unusual that could be seen in a blood screening? Should I be on antibiotics or other medications maybe..? What could be the root of it all? How likely is this ALS/MND?


Good luck to you all,
best wishes and prayers
 
Hi Dirk,

Welcome to the site.

I have not heard of infection as a symptom for ALS. Your GP would have found issues with your blood tests if you have a bad infection.

The best person to diagnosed MND will be a MND specializing neurologist.

Glen

Dr Google is probably
 
Thank you Glen

I am waiting for an appointement with an MND specialist. But waiting is very difficult as many people in this process now. I am not feeling well and my body sends signals that it is in batlle. I feel my strenght is slowly decreasing..

I hope to see a neurologist specialized in MND soon..

Best whises and prayers
 
Does anyone know if extreme exhaustion mental and fysical also is a symptom of MND?
 
Mental and physical exhaustion is a symptom of MANY things and would not be specific to ALS. It will be a clue though that you should discuss with the specialist to get to the bottom of what is happening.

Wishing you the best.
 
I am also wondering if twitching is normally I first sign of ALS or does this usually come after athropy and weakness? I started with the twitching a week after I had left this dirty building. How long can twitching persist, without atrophy and muscle weakness in ALS?
 
Twitching is not something that is used in diagnosing ALS. It is not a first sign of ALS. Relax.
 
Thank you for reassuring me. I am trying to relax, but it is very difficult. Especially since the last week I feel so tired and weak. Next week I wil probably see a neurologist. So I have to be strong. I know that I must consider myself lucky till this point because I haven''t been diagnosed yet. So there is hope. I am deeply sad that such a horrible disease exists and feel so sorry for those who have been diagnosed. I wish you out there all the best, strenght and courage to go on. My prayers are with all of you.
 
when i first saw my neuro, i felt great! i just had a pesky problem of my hand not working right. i still feel pretty good except for the fact some of me just doesn't work anymore......feeling lousy or overall weak was not what sent me to the doc.
 
Thank you for your comment Paleshia. It must be hard to have been diagnosed. I am so sorry for you. I don't know what to say..
I am trying to keep my own anxiety under control. Thats difficult sometimes. I had to deal with cancer earlier. Luckily I survived. But I think the stress of that period is showing it's face again right now. This twitching is driving me crazy. It is all over my body..already for ten months..

Take care, wish you and all whom have been diagnosed or are still waiting for it, strenght
my prayers are with you
 
Hi Dirk--

It may be more than the stress of your cancer treatment to be showing its face now...have you considered that some of these things that you are experiencing now could be long term affects of cancer treatment? How old were you when you went through treatment?

I ask because I am also a survivor who has some of these symptoms, but not ALS. I still pop my head in on these boards every now and then, but my doctors do not think that I have MND or ALS. However, I do have widespread fasciculations, weakness and some atrophy. However I also have some sensory issues and it's been three years since my symptoms began and I have no obvious presentation (i.e. I can still function fine but my muscles get easily fatigued.)

I've often wondered if these symptoms were long term side effects of the radiation/chemo I went through when I was a child. I was 12 when I went through that stuff and I am 27 now.

Best,

Andy
 
Hi Andy,

Thanks for your reaction. The stress that surrounded my cancer treatement is probably comming back to my right now. I didn't have chemo therapy. They used localized radiation therapy in my case. I really don't know if in your case it could be linked. I don't think it is linked in my case though. My fasculations started about a week after I started to work in this dirty building with enclosed airco system(the filters weren't cleaned for over twelve years, while it should have been done every year). The wound on my hand which didn't close the during my first working day(I shook hands and tuched a lot of things) was most likely an infection entry all day long. I used a medicine called Depakine(valproaat) at the time and this medicine has as side effect that wounds don't close easily. This made an infection from bacteria, mold spores, mycoplasma or whatever was inside this buidling(and airco system) possible.

Take care,
all the best
 
Hi everyone,

Thanks for all your replies. Next week I will go through neurological exams and will probably get an EMG. It will be done by neurologists specialized in ALS like diseases and symptoms.

My fascics have intensified. Sometimes I feel dizzy too, light headed. And sometimes I am breathing more heavy during a long walk. I am sceared it is due to decreased muscle strenght in my breathing apparatus.

Most of the fascics are single time pulses. And they appear everywhere. At the soul of my feet, in calves, around the ankles, knees, upper legs, belly, back, shoulders and arms. Mostly noticeable during rest. Sometimes the pulses are jerky(in bed or when I sleep). I also think I am getting weaker in arms and legs. As climbing stairs seems more difficult.

To make things worse, I have a profound fatigue all the time. This is something I don't seem to hear of a lot in connection with ALS. Maybe anyone has experience with this in connection with twitches and fascics?

The diagnosed seems to be a waiting game which seems endless and is very difficult to handle for me. I am trying to take it day by day, hour by hour and sometimes just by the minute.

Wishing you out there all the best and a Merry Christmas
 
Dirk. Fascics or twitches can be caused by anxiety which you seem to have. Your other symptoms don't sound like ALS to me. I'm no doctor but your stuff sounds more viral. Try to not worry and enjoy waht's left of the holidays.

AL.
 
Hi Al,

Thanks for reassuring me. At the moment I am waiting for an EMG. I will have it in about two weeks from now. I will keep in mind that it could also be benign as they say.

Best wishes for the New Year to all of you out there
 
Status
Not open for further replies.
Back
Top