Feeling the need to vent!
So i had my ''follow up'' appt yesterday with the original neuro i saw in December after my first epsiode. She dismissed me and made me feel like an idiot and was the reason i went private in the end. But since nobody had given me scan findings i thought i would go and give her a chance to apologise for thinking i was playing up. She was actually nicer than prior. Initially started with the ''we think you just had a virus'' speech she did in December until i presented her with a list of my new symptoms, pins and needles, L'hermitts sign etc. She then told me i have 8 leisons on my brain, but it doesnt matter how many they are, its the ones that are active that count. is that right? it just seems worse to have 100 and 3 right? She has deiced to refer me to a MS specialist to discuss treatment options, even though she thinks the scars could be 'post viral' (i dont get this) and also she said she expects when i have my brain/neck/spine contrast mris next week, she expects me to have some on my neck and spine, can those be post viral too? she explained post viral will not light up, and active ones will. So i guess thats where im left currently. She has given me a course of 3 day 500mg steroids to battle the new symptoms but didnt prescribe me the tummy protection stuff, another fluff up!
and the grande finale of nhs cock ups in this case.... the spinal fluid test for MS that got sent away, was mysteriously cancelled and they cannot find the fluid from my spine. so it looks like i will have to go through that all again!!! i am furious and have put in another complaint since my first one went no where. Anyone have any ideas how long a referal to a MS specialist takes? im hoping this means i am offically ''in the system'' and my care will improve. Although she is still hoping i had a virus and not ms at the end of my appt she gave me a list of drugs to research and ''not be scared if the specialist hits me with big drugs, hard and fast'' i dont understand how she can think its a virus but then prep me for big ms drugs? The drug she mentioned is Natalizumab that she thinks i will have to have once a month. im so confused. looks like more waiting.
I arent really discussing my issues alloud to not upset my family and friends or jeprodise my working relationship with people but i actually feel like im going to blow up. Also the steroids. its such a high dose, and im an 8 stone person, im scared what the side effects will be?
@hayleyc85 , I've just read back through all your posts to try and understand this torturous journey that you are on. Personally, I find it hard to believe that a Neurologist has attributed brain lesions to a virus. OK, nobody knows what causes MS, so it may be a virus, but it hasn't been proven yet. Yes, lesions can be historical or active. Both types are capable of causing problems as they are all areas of damage to your Central Nervous System (CNS). It's just that the active lesions, signifying inflammation, can be addressed with the use of Steroids, to reduce the inflammation and lessen the damage that is being caused. It's good that you are being referred to an MS Specialist, as no-one to date seems to understand the condition. I'd contact the MS Nurse(s) again to see if they can find out details of the referral. Then you can contact the Specialist's Secretary to see whether you can get in early, by picking up on a cancellation at short notice (if you can be that flexible). As to the Steroids, these are naturally produced by the body, just not in the high dosage being prescribed. They are not the steroids used by athletes, etc. But, they may give you some bearable side effects, e.g. a metallic taste in the mouth (use mints to hide this!), mood swings, trouble sleeping. These side effects will quickly disappear when you've finished this short course. The Steroids will address the present areas of inflammation (active lesions) to allow your body to recover from any problems that they are causing. The Steroids will be assisting this recovery for the following 6 - 8 weeks. I do hope your journey to some form of diagnosis becomes a bit easier for you.
Thanks @stumbler and thank you for taking the time to go through all of the posts. i know there are a few! i am coping fine with the probability of having MS. I knew something was massively wrong, i initially thought i had had a stroke so wasnt surprised that this is the outcome. I just wish something would go right for me but i seem to be in the same boat as a lot of people sadly. Just one last question, if i start taking the steroids, will it affect what my mri's next week will have? for example will i look ''recovered'' if the steroids are doing their thing? Obviously my mris need to show a true likness to whats going on in my body. My neuro likes to refer to me as ''recovered'' at least once a minute when i see her. she hasnt got a clue.