On Friday my neurologist told me I might have spinal cord infection, but he left me with way to many open questions. Could somebody help me please?
Let's begin with my story at the beginning...
It all began on Friday 14th of December with an itch on my right shoulder. Before that I was not sick, or had any physical trauma or anything out of the ordinary really. In couple of days the itch spread further down the shoulder all around and was accompanied by tingling sensation but it didn't stay there. Three days later when I scratched the itch it send a pulse wave of unbearable pain down my whole shoulder and after it subsided my shoulder burned. Of course I didn't trust it so I went to a doctor soon after.
First visit with a doctor didn’t go that well because it was almost Christmas time they were over swamped and I didn't get to speak to my doctor but a stand-in and I really got the feeling she wasn't listening to me... all she said was that it is a herpes zoster and that it will last 6 weeks, here you have some aspirin...
I went home, but something didn't feel right. I took the pain killers but they didn't work with the shock waves of pain and to make things worse the skin on my shoulder became more and more hypersensitive to touch, it became that bad that the pain wave triggered by even the slightest touches of my T-shirt. The itch with combination of pain was unbearable and it didn’t stop at night... pain waves came even when I was a sleep, which woke me up in panic. Because of that I called the doctors again and all they did is gave me stronger pain killers and didn't even want to see me.
A week and a half from the beginning of the whole ordeal the pain got worse, it covered a bigger area, it lasted longer, was really easy to trigger and the intervals in-between pain waves got shorter with every day, was followed by burning sensation and redness to the area. But that wasn't all now I also started getting real bad headache after every attack I had, which slowly subsided with time. Now I was completely panicking... My mom has herpes zoster so I have seen it and she never fell to the flour screaming from pain and then I had enough. It was Sunday so we had to go to emergency doctors but soon the same story followed they listened took a look and said its herpes and they can't do any thing. Of course I broke down almost pleading for something so they finally contacted a neurologist to consult with him and he gave me some anty-epilepsy meds which have a side affect on neurological pains and they sent me home yet again.
Because I still felt something was wrong and I didn't trust it I went to my own doctor again and again I told him the whole story yet again and he got worried... finally somebody that listens. I do have to admit that the pain by that point started to subside because of the medication I got a day before (and within a week the pain attacks did go away).
He sent me to neurologist and the neurologist did MRI of my neck and blood tests. So now we are already one month further and by looking at MRI slides my neurologist says it might be a tiny infection of spinal cord... there was this white stripe in the middle of the spinal cord (on the vertical slices of my neck (region C4-C5)) and a white spot right where a spinal channel was supposed to be on horizontal slices through the neck. But bit lover was also a similar stripe just bit less visible than the first one. The weird thing (to me was) there was absolutely nothing wrong with my blood work.
The doctor gave me two options... first is to do MRI of my whole nervous system and to collect some spinal fluid or to wait four weeks to see what will happen... if my symptoms will lessen or worsen. The neurologist made it sound like it is nothing really serious and he then scheduled a next appointment with me in four weeks.
I now did some research on internet on the topic but it is really hard to understand a lot of the articles (due to the medical-language) but one thing that does keep popping up all over is that this type of infections are really serious and can be life threatening.
What am I to do? Should I be worried? What could be causing it? What can I do about it? Do I need to act now?
The medications that I am on are also making me really confused, sleepy and it is also really hard to think or focus, so I really don't know how much of my other sensations are due to the meds or the sickness... so what should I specifically be careful about?
I thank you for all the help you will give me in advance!
I don't know anything about this, but I would do the following:
Do the MRI as soon as you possibly can. If nothing shows up on that, see another doctor to get another opinion. If he also suggests getting spinal fluid, I would do that as soon as possible too. Better to know!
I wish you all the best, keep us posted with what happens :)
I would definately be having further testing, do not wait and worry yourself. Get the tests done. Now you are seeing a neurologist they should know what tests need to be done and the fact you are researching also, next time you see the nuerologist you can go prepared with some questions to ask as well.
However please do not take having a lumbar puncture/spinal tap lightly as they can cause problems in themselves if not done by a skilled specialist.
Did they tell you it was herpes zoster for sure? If so, are you on Valtrex? Look up herpes zoster myelitis/transverse myelitis. I had something similar and was misdiagnosed. I had a huge rash across my abdomen at the waist line, weak legs etc....long story. Anyway, I took a picture of the rash.. Six months later, still not better I saw another neuro. He said it looked liked herpes zoster. He said it was too late to do a spinal tap and look for herpes zoster in the central nervous system. He said it has to be done when the symptoms first start. I don't know if this is what is going on with you but your story sounds similar.
Well the point with me was there was absolutely no rash to be seen on my skin I only had really wired neurological symptoms... hypersensitivity of the skin which triggered pain attacks... like I already wrote. Plus the neurologist already excluded herpes zoster as a possibility.
I decided to go to my own doctor again tomorrow to really talk about a couple of things even further... that's what personal physician is for after all. I think I do need some medical advice first.
I also decided that I want my doc. to contact the neurologist about the MRI which I wanted to be done "yesterday" so that we really get to know full extend of the problem (and even if it is just localized at least we'll then know for sure and it will be finally some good news for me and my little family).
I am also first going to talk with my doc. about lumbar puncture/spinal tap to get to know what risks are involved and what the benefit of carrying one out would be.
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