Aa
In desperate need of help
Hello,
Im looking for some help, I am running out of options here and I thought I would try this site again.
four months ago I came down with some kind of virus and was struck with all kinds of symptoms that scared and confused me. It started with a headache, the worst I had ever had, then a fever, muscle twitches, hearing loss and vision problems. This went on for about a month, I went to the ER several times and had blood work and cat scans done but they found nothing alarming. They said I had some kind of influenza but they weren't sure. At this point I started to have some memory problems, I was getting confused easily and found it hard to complete tasks I had done every day prior to getting sick. I was referred to a neurologist by one of the ER doctors at the end of february and after a neurological assessment determined that I was fine, "probably stress" he said. I also had an EEG done before my appointment to rule out epilepsy because I had been having seizures while I was sick as well, the neurologist saw no irregular activity.
In march things seemed to be getting worse, I stopped working because I couldn't do my work anymore (I worked as an electronics technician) I was getting fevers on a nightly basis and the muscle twitching was getting out of control. The thing that was the most worrying was my memory, I was having moments where I couldn't recognize my family members and entires days that I couldn't really recall.
In April I was a complete mess. I honestly don't remember much, I was in bed most days because I am fatigued beyond belief and my head would hurt so badly when I was on my feet for a few hours. I went back to the ER towards the end of April because of a massive seizure like episode, they couldn't do anything for me there so they referred me back to the same neurologist who denied me citing that he had already evaluated me and determined nothing was wrong.
This month has been really hard, I've all but given up because I am starting to feel crazy. I saw a psychiatrist and she told me I was depressed, but who wouldn't be given what has taken place. I had been wanting to get an MRI for months and finally got a chance when I participated in a research study for people that smoke cigarettes (because the wait where I live for one is 8 months). I was given the results on a disc and had my GP look at them and he saw nothing wrong but scheduled me an appointment with a new neurologist to evaluate my current condition and have the MRI read. The MRI was 1.5 strength and done without contrast.
At this point I can't remember what I have done after about an hour or so and my long term memory is shot too. I have a head ache every day from the moment I wake up until I go to bed, some times it makes me sick. My hands and head shake constantly even when I am perfectly calm, I am now having difficulty eating due to the shaking. speaking has also become very difficult, I used to talk to customers on a daily basis and had a very broad vocabulary. I stutter and slur now so I don't bother talking much anymore. I have strange sensations all over my body, hot, cold, shock like feelings and muscle twitches constantly. I have had my thyroid, B12, iron levels checked, no tumors or anything major had been found through the imaging. I just have no clue what to do anymore.
Does anyone out there have any suggestions or similar experiences? I really can't live like this anymore, its not worth it.
I am 24 y/o, male, no previous health problems, don't drink or do drugs.
Im looking for some help, I am running out of options here and I thought I would try this site again.
four months ago I came down with some kind of virus and was struck with all kinds of symptoms that scared and confused me. It started with a headache, the worst I had ever had, then a fever, muscle twitches, hearing loss and vision problems. This went on for about a month, I went to the ER several times and had blood work and cat scans done but they found nothing alarming. They said I had some kind of influenza but they weren't sure. At this point I started to have some memory problems, I was getting confused easily and found it hard to complete tasks I had done every day prior to getting sick. I was referred to a neurologist by one of the ER doctors at the end of february and after a neurological assessment determined that I was fine, "probably stress" he said. I also had an EEG done before my appointment to rule out epilepsy because I had been having seizures while I was sick as well, the neurologist saw no irregular activity.
In march things seemed to be getting worse, I stopped working because I couldn't do my work anymore (I worked as an electronics technician) I was getting fevers on a nightly basis and the muscle twitching was getting out of control. The thing that was the most worrying was my memory, I was having moments where I couldn't recognize my family members and entires days that I couldn't really recall.
In April I was a complete mess. I honestly don't remember much, I was in bed most days because I am fatigued beyond belief and my head would hurt so badly when I was on my feet for a few hours. I went back to the ER towards the end of April because of a massive seizure like episode, they couldn't do anything for me there so they referred me back to the same neurologist who denied me citing that he had already evaluated me and determined nothing was wrong.
This month has been really hard, I've all but given up because I am starting to feel crazy. I saw a psychiatrist and she told me I was depressed, but who wouldn't be given what has taken place. I had been wanting to get an MRI for months and finally got a chance when I participated in a research study for people that smoke cigarettes (because the wait where I live for one is 8 months). I was given the results on a disc and had my GP look at them and he saw nothing wrong but scheduled me an appointment with a new neurologist to evaluate my current condition and have the MRI read. The MRI was 1.5 strength and done without contrast.
At this point I can't remember what I have done after about an hour or so and my long term memory is shot too. I have a head ache every day from the moment I wake up until I go to bed, some times it makes me sick. My hands and head shake constantly even when I am perfectly calm, I am now having difficulty eating due to the shaking. speaking has also become very difficult, I used to talk to customers on a daily basis and had a very broad vocabulary. I stutter and slur now so I don't bother talking much anymore. I have strange sensations all over my body, hot, cold, shock like feelings and muscle twitches constantly. I have had my thyroid, B12, iron levels checked, no tumors or anything major had been found through the imaging. I just have no clue what to do anymore.
Does anyone out there have any suggestions or similar experiences? I really can't live like this anymore, its not worth it.
I am 24 y/o, male, no previous health problems, don't drink or do drugs.
Hey,
No I haven't, but I read up a lot about the disease and a lot of stuff matches up. Do you have any idea about how you get tested? As I said in my other reply I live in Canada and im not sure about the procedure here?
Has you're sister started treatment yet? what were her symptoms like?
Thanks,
Dan
No I haven't, but I read up a lot about the disease and a lot of stuff matches up. Do you have any idea about how you get tested? As I said in my other reply I live in Canada and im not sure about the procedure here?
Has you're sister started treatment yet? what were her symptoms like?
Thanks,
Dan
Hey there,
Thank you for you're kind words. I would love to go private and see a neurologist right away but I live in Canada and private clinics are few and far between. I think I will mention the migraine thing at my next appointment with the neurologist, hopefully they can tell me something!
It wouldn't be so bad if I could recognize the people that I love but it had become nearly impossible. I have had the same GF for three years and I barley recognize her, it kills me to be experiencing that :(
I won't give up though, I just hope some of this damage can be reversed when I do find out whats going on.
Thanks again,
Dan
Thank you for you're kind words. I would love to go private and see a neurologist right away but I live in Canada and private clinics are few and far between. I think I will mention the migraine thing at my next appointment with the neurologist, hopefully they can tell me something!
It wouldn't be so bad if I could recognize the people that I love but it had become nearly impossible. I have had the same GF for three years and I barley recognize her, it kills me to be experiencing that :(
I won't give up though, I just hope some of this damage can be reversed when I do find out whats going on.
Thanks again,
Dan
This sounds like my sister! She has been recently confirmed to have Lyme disease. Havw you been tested/checked or reearched Lyme? Hang in there!
Hi, Danjob,
You poor thing! I can only suggest, as I'm not a doctor, just a Mum who has seen a lot, that, in the UK, I would say that if you have any spare cash go to a private, recommended neuro.
My daughter, 30s, had similar problems. Emergency 12 times, weeks in hospital, no diagnosis. Then, after telling them I was going to bring an action due to their negligence, we pooled our cash and saw a private Neuro. She diagnosed basilar migraine straight away. Look at this on the migraine site. Everyone's different. It may be. I can't remember all the different symptoms.
My point is that somewhere in the US near you there must be a hosp for neurology. If so insist that your doc refers you.
The good news is that no-one can find anything terrible wrong, but the bad news is that you still feel so ill! Don't you dare give up! Maybe ask a close friend or member of your family to take the baton and fight. My daughter is feeling much better now but still has minor symptoms which escalate if she does too much. I, myself suffer M.E./ C.F.S. I have suffered some of the symptoms you describe (short-term memory loss, exhaustion and "losing words" from an originally excellent vocabulary) but, again, everyone is different.
Hang on in there. We all know what it's like when you feel so bad and no-one listens. I hope I've helped a little. Maybe there is someone around with superior knowledge who may be able to give you more definite advice. Take Care
You poor thing! I can only suggest, as I'm not a doctor, just a Mum who has seen a lot, that, in the UK, I would say that if you have any spare cash go to a private, recommended neuro.
My daughter, 30s, had similar problems. Emergency 12 times, weeks in hospital, no diagnosis. Then, after telling them I was going to bring an action due to their negligence, we pooled our cash and saw a private Neuro. She diagnosed basilar migraine straight away. Look at this on the migraine site. Everyone's different. It may be. I can't remember all the different symptoms.
My point is that somewhere in the US near you there must be a hosp for neurology. If so insist that your doc refers you.
The good news is that no-one can find anything terrible wrong, but the bad news is that you still feel so ill! Don't you dare give up! Maybe ask a close friend or member of your family to take the baton and fight. My daughter is feeling much better now but still has minor symptoms which escalate if she does too much. I, myself suffer M.E./ C.F.S. I have suffered some of the symptoms you describe (short-term memory loss, exhaustion and "losing words" from an originally excellent vocabulary) but, again, everyone is different.
Hang on in there. We all know what it's like when you feel so bad and no-one listens. I hope I've helped a little. Maybe there is someone around with superior knowledge who may be able to give you more definite advice. Take Care
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