My name is Ian and I am new to the forum
As the title say
s. I need to chat!! Before I start thanks in advance for reading.
A few years ago I was struck down with Ramsay Hunt Syndrome. It took a few months to recover but I eventually got back to work. However the one thing I was left with (other than tinitus) was a partially numb right thigh. My Dr assured me I probably had a trapped nerve due to laying still for many day
s. I was happy with this answer as it made perfect sense but as time went on the leg got number and around a year later the left leg joined in the party!! A few months later I was out walking my dogs when my leg
s seem to go from under me it soon passed but again over months and years the attacks became more frequent and more aggressive. I now have to use a stick when they occur and this can be for a period of weeks or months at a time. I also have bad headaches, bladder issues, muscles spasms in both calf muscles 24/7!! When I am having an attack/flare up my vision becomes blurred I have a pressure feeling in my head which is like a strained confused feeling when I am trying to walk (thats how bad it is now) I have to concentrate on every step!!
I saw a neurologist around three years ago and had an MRI scan the results showed markings on the brain which in his words “In the right context could be attributed to MS” Before I could see him to discuss this result my GP had given me, he left. His replacement has a different view and feels the markings are consistent of someone my age? I have since had two lumbar punctures (both borderline). After a few more visits the neurologist and rheumatologist who I started seeing last year both decided I may have Sjogren`s Syndrome affecting the CNS. I went for a biopsy of my saliva glands in February and the result was again borderline.
I then had a really bad flare up in March and could hardly walk and was put on 60mg of steroids for weeks slowly reducing them down to 5mg by April when I saw the Neurologist. As they had kick started my system they kept me on 5mg a day until my next visit in July. However last week things again took a turn for the worse and I am on 20mg a day and my visit is now in 2 weeks.
Ever since I was a child I have had border line illnesses of one type or another and when I got chicken pox I was laid up for weeks. My parents, brothers, friends, wife and even myself all doubt my sanity? Having never had a full diagnosis I feel so unsure of my own inner feelings i.e am I laying it on thick, am I trying to get sympathy, am I trying hard enough to get better…am I really ill. Of course at the end of the day I know I am ill but I have no one nearby who has had a similar experience that I know of? The DR`s are doing everything they can to come up with an answer but the frustration and despair is something on top that I hope venting openly for the first time will help.
Thanks again for your time reading this post. If anyone has any thoughts on my condition I would love to read them.