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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


I have posted on this board before with a question here and there, all because the Doctors/consultants can't give me a definite diagnosis. That ok to a degree, I wouldnít want them to say something if itís not true. However the whole process is extremely exhausting when you have a long term debilitating illness, thatís genuine and long term.
My 1st neuro saw I had a lesion on my brainstem, and thought it may well be demylinating, however he wasn't sure and said it could even be a brain tumour.
He didnít do anymore tests and I was left with various symptoms that couldnít be explained.
When I moved because of my partnerís job, I saw a new GP, who suggested a fresh set of eyes to look at this would be a good idea. I was referred to a new neuro who had the bedside manner of a newt. I have to say in his defence though he was very proactive and ordered every test and blood test that could possibly be done, to be done.
He was defensive from the very moment I saw him and took the idea that this was down to my state of mind, maybe I needed to see a shrink! He did another MRI scan and stated there was no lesion and in fact it was no more than an artefact on the scanner. . I challenged this as my original MRI scans had been done on 3 different machines, all showing the same result. On the flip side I was pleased there was now no lesion but how could he account for the fact that I was still having symptoms.
He ran a number of blood tests to rule out Lupus, Lymes and other illnesses. He suggested that because my symptoms can come and go, i.e., last for a week, then go, or a few months etc, he said this wasnít the pattern for a case of MS and so he asked we make a video when I was bad to show him.
We did just this and presented him with it. It showed a number of problems I was having, muscle spasms, gait problems, balance issues, slurred speech etc. He didnít say much, but he did suggest I have a lumbar puncture. I had this done and it came back positive, showing a very high number of Oligoclonal bands in the CSF, he said it was so high it was spilling over into the serum and because of that it certainly could NOT be MS. When I had the procedure done the nurse who was doing it said to me afterwards, "your MRI results are here do you want them"? So of course I said yes. Her exact words were you have multiple white spots on your scan and on your spinal cord, its MS! To be sure I asked her to repeat herself; she said the same thing again. I thought this a little odd as my neuro would surely be the one to confirm this however, my partner even asked her to be clear on what she was saying.
So I told the neuro this conversation and he said you have ageing spots although you too young for them. So now I was really confused. A few months later I became allot worse, losing my balance, couldnít walk unaided, the pain in my back was severe, muscle spasms, slurred speech, brain fog and so on, I ended up in hospital. They said we canít treat you cause your neuro doesnít know whatís wrong, but have you seen a psychiatrist?...I soon found out that his notes on me would infer I had some sort of psychiatric problem, and because of this, everyone who read the notes just took his word for it and equally dismissed me. He came to visit me on the 2nd day and witnessed the problems I was having walking, he said whatís wrong with you, is your back bad or something, get a bit of physio and that should sort you out. He made me feel like a total hypochondriac.
I left hospital 3 days later. I slowly recovered and was fine for 5 months then bang! I really went downhill. My GP was very good and said this is wrong, so wrong, but wouldnít admit me as he felt my neuro would be of no help atall. Instead he treated the symptoms and suggested we find another consultant. I lost 3 stone in weight. Because of all this, I was feeling very low; he said take prozac that should help to get you through this. I took it and three weeks later I had a full blown psychotic attack brought on by the tablets and ended up being sectioned for my own safety. I had suffered a terrible reaction brought on by the tablets and guess who came to see me on the psychiatric ward? My neuro! He said I knew it was all in your head, and continued to ridicule and laugh and dismiss the whole illness. I wanted to die, I felt SO low.
I composed myself the best I could and told him I no longer required his opinion and he was sacked. I told him he was a disgrace to his profession and that I felt sorry for anyone who crossed his path looking for help.
Since then I have been seeing another consultant whose actual field is Lupus, he ran various tests and confirmed it wasnít Lupus, but more like MS. He did say I am not an MS specialist however what you need is treatment. So he has sent a letter to my GP suggesting six months of steroids to be taken with Azathiaprine for 6 months.
I had a short course of steroids before, administered by my GP. It did help, but the course was very short, yet so far itís the only thing thatís helped.
This guy cannot say its MS, he specialises in Lupus. So what do I do? Do I take this medication? Iím in a real mess. I feel like Iím wearing lead boots, my legs just feel so heavy at times, my arms ache, as does my back. I get real bad muscle spasms down my left side. I wear tinted glasses as I find some days to bright to cope with. One of the worst symptoms I get is this, itís like having a heart attack, itís like every muscle in my torso locks and the pain, crushing feeling I get is hell. When I lower my head I get like electric shocks going down through my torso. My forefinger and thumb are very painful at times and it hurts when I try to grip, I have lost so much strength and I appear to be a shadow of who I was years ago.
I have nerve pain, sometimes I lay in bed and it like my legs are burning and when I go to touch them the sensation is that of small shocks, it happens on my head as well, it like different areas and it migrates around my body. My body feels old and Iím only 41. I forget words mid sentence; have bowel probs, nausea, stiffness, tremors and so on and on.
Iím not here to say I have MS, but are there different types of MS, because I now have no lesions apparently, they say they donít know what it is.
Am I alone in this? I just want to be taken seriously. Is anyone here on Azathioprine? And steroids, 6 months is a long time when you realise the side effects. I have truly had enough.





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