One more thing...

[zoefromsussex]

Happy new year to  you all,
Firstly, I'd just like to apologise in advance if I'm coming across as a moaner (bearing in mind how badly some of you are affected etc) but I have nowhere else to vent. Basically, I'm getting so fed up with all the random weird things which have gone on ever since the ON first kicked off. Every day it seems like I notice something new, albeit subtle things. Today the tip of my thumb is numb and I've got the annoying buzzing back in my ear. Small things but upsetting when you realise its not 'normal'!
I don't know whether to go back to my doc again or whether to just give up and wait and see if anything major ever happens. I only ever agreed to the LP & MRI because the neuro I originally saw told me it would confirm MS & help me get treatment. Now it seems the results (which showed lesions & banding) are unimportant. I'm scheduled to see a neurologist in June but can't really see what the point is. He says he suspects MS is causing all the strange goings on but can't diagnose me unless I have another episode lasting at least 48 hrs.

[KarenNadine]

Hi Zoe :)

I am Karen from Kent :)  Gotta love the NHS eh?

I was back and forth for the last 2 years until I had a complete melt down and paid out of pocket to see a private neuro (who is LOVELY).

He has DX MS based on my history (had my first symptoms 20 years ago) and then it has flared up again,  MRI showed several lesions.  Lumbar to come (although I have read that even that isnt 100% so why put myself through it?)

I so hear you.  These horrible sensations are so frustrating because you LOOK normal to other people.  I feel like I am walking on candy floss, I tingle all the time, my face is numb .... I could go on and on but I wont.

Bottom line is that I am here for you if you want to vent, moan, whatever .... it is nice to know other people have some idea of how you are feeling.

BIG ((hug))
xx

[zoefromsussex]

Hi! I've only just noticed your comment. Thanks. It really does help.
I'm glad you enjoyed your lunch trips to Crawley! So much bad stuff is written about the town but I really like living here and of course it's so convenient for London and Brighton.
My history is that I presented with optic neuritis last October. To cut a long story short I was sent to St George's in Tooting to see a neurologist who said he wanted me to have an MRI & LP and he explained about the criteria for a dx. Anyway, I had both tests on 20th Oct and got reports confirming o.banding was found in my spinal fluid and several scattered lesions were found on the mri (haven't got the report to hand but I believe most was in the cerebellum) Anyway, had to wait a further two months to see a different neuro because I was transferred back into the care of East Surrey Hospital. Finally saw the neuro on 20th Dec and he says we now take a wait & see approach for a year and a half and if nothing happens during that time, we forget all about it. Then, just as we were leaving his office he said "I think it's more likely than not that you have MS"!
All quite worrying to me but today, for the first time in ages, I've woken up with no tingling or numbness and with a bit more colour in the affected eye. Happy days!!!!

[zoefromsussex]

Good suggestion re writing it down! I had so many questions for my doctor on Friday but I got put off by his expression of total disinterest! My husband says he's coming with me next time so that he can mention the stuff I forget.
Have a great week, Zoe

[doublevision1]

Sorry I'm not familiar with your history but just based on your comments re: positive MRI and LP, I am surprised your doc is taking a wait and see approach. You said he told you that he couldn't make  a MS dx unless/until you have another episode...does this mean you have had only one episode thus far?  Did he discuss with you the dx of CIS and whether this warrants starting treatment early, before the next episode strikes?  

I suggest you take careful, complete notes on all of these symptoms you continue to have, even those that seem innocuous.  Jot down dates, part of body affected, description of abnormal sensation and function, duration, etc.  However if something more moderate to severe happens, especially involving vision as you have mentioned, I would seek medical attention right away.  

Good luck and keep us posted.  And no, you are not a moaner and do not need to apologize.  Your questions and concerns are totally valid and if it helps to post here then keep doing so.

By the way I have had lunch in your town on the way to Brighton from London, twice!  First in 1987 and again in 2007.  A lovely place!

[Dagun]

I´m 44 years old, my youngest is my daughter 14 years old. So I am probably not as busy with my kids as you :). Even though my two teenagers keep me on my toes. But yes, ofcourse you should be able to call your neuro and ask him about this. Before you do you should write it down exacly what you would like to say to him, because so often they get us confused when we start asking. They often have that "scary" kind of "I know it all/you don't" act, so we forget all we are going to ask!
Dagun

[zoefromsussex]

Oh don't get me wrong, I do try and just get on with things...and with a 9 month old and a 5 year old (plus a husband lol) I'm more than kept busy! The flu-ey days are starting to wear me down though as is the poor vision. I think I would relax more if it was explained properly why a lp & mri was carried out.
How old are you Dagun, if you don't mind me asking?
All the best to you too!

[Dagun]

Happy new year Zoe! I understand you all to well. Yes this endless waiting time is awful, I always get these "little" things on and off. Also the tone in my ear, numb toe, finger and the list is SO long by now. At first I was so impatient, but now I´ve calmed down, because I've learned that my neuro want's to wait longer or at least untill something really drastic happens (bad episode that lasts long). So I just have to accept it, the more I learn here from others I see that this is the same all around.

I am trying now to just focus on living my live not thinking about this all the time, but it is SO difficult and fruststrating!! But we can't just let live pass us, so we have to try.
My best to you,
Dagun