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Greetings from a new member

For my first post I would like to say a Big Hello to you all…so…“HELLO EVERYONE!” I have dipped in to this site every now and again over the last few years as things slotted into place and have always been impressed with the support and kindness that you all show to one another, it is a wonderful thing to see such compassion & apathy for others. So about me - My name is Allen, I’m 35 and live in southeast Essex. I had my DX in May of this year for RRMS, still having further tests but was kind of relieved to arrive at this destination after several misdiagnosis, lost records/scans/history for my Neuro and Eye Clinic (hospital not me) from my last major “wobble” 9 yr ago and so when my health started to slide in 2011 and found myself being taken to A&E in October from work with suspect heart trouble, which turned out to be a rather large seizure but before I got to that point was sent home as i had had an “anxity attack” saw GP next day whom looked at my history (i will keep this GP for as long as possible v good) and sent me striaght back for MRI - Consultant was alarmed at the abnormal changes and additional damage in my brain and was not allowed home again and so I spent a few days in the ASU with a suspected stroke on hourly obs, with lashings and lashings of tests to keep me occupied :slight_smile: Thankfully was not a stroke, nor heart trouble but I started the investigations all over again, 9 yr previous illness and 2 yr later ending statement was “We know you have had abnormal changes to brain and it has caused damage but we don’t know what caused it or what the consequences will be, you appear ok so off you go” There had been a two month delay in 2003 as my then GP had fobbed me off and stated that I was an alcoholic…I had lost some senses as well as left side of body and described them as being continually drunk…that will teach me not to press the point…Oh hindsight! Anyway once all the usual tests had been done the only avenue left was the LP…(what fun that was, when it felt like she caught a nerve and I just missed the Jr doctor who was helping the consultant when my leg flew out from the foetal position…thankfully the Jr doc moved her head…pheew! LP told them what they needed to know and gave me the diagnosis of RRMS, having further tests to establish the damage done in 2003 and more recent changes but also what is triggering certain aspects before they give me med’s and further treatment. Turns out I’d had symptoms since I was a child and had just been missed…and so here I am :slight_smile: Sorry for the essay…this is good therapy! Am looking forward to chatting and getting to know you. Kindest regards Allen

Welcome to the family Allen…

Charlie,z

Hi Allen,

Your story is not unusual, its just so sad youve had to wait all this time for a diagnosis. On the other side of the coin, perhaps its as well you carried on your life (in between episodes) not knowing, therefore not fretting, apart from major happenings. I was very similar in that I totally lost my sight briefly, then had total blackout, both within a 10 year period with no explanation.

The diagnosis is somewhat a relief knowing we are not drunk, mad or over anxious, as has been suggested to me on various occasions. Even now Im not always believed, however that is another story. At least having the label tells your gp and neuro you have definite reasons for particular symptoms.

Welcome aboard. We share everything on here, so fire away if youve any issues you want to discuss. We hold each others hands in happiness, sadness and fear.

Best wishes

bren

x

Hello Allen, welcome, it will be good chatting and getting to know you. Cheryl:-)

pull up a chair allen. the cream cakes have been taken care of today so i guess the drinks are on you.

pint of lager please!

welcome aboard.

x

Thank you all for your warm welcome, I had waited maybe a bit to long before joining but am now very happy for doing so :slight_smile: Bren, my thoughts exactly - it cropped up in my mind every now and again but otherwise life as normal, I just got on with my head down and made changes when needed, the recent one has kicked the stuffing out of me a wee bit but am learning to read the signs and manage it as best I can…and you folks are a wealth of knowledge that have helped me understand and progress to a much better state of mind. Hmmmm Cream Cakes, my weakness has been exposed already. Zelda, a pint of lager you say and I had just brewed a pot of Earl Grey to go with those lovely Cream Cakes…doh! No problem a trip to the Off licence is in order I think :slight_smile: Allen x

we could do with a new bar person allen. trouble is we all drink but never cough up! hic

(can you tell i dont get out much lol)

Hi Allen and welcome. I’m loving all the new people bringing nice treats

xx

Hello Allen and welcome. Glad you found us.

You’ll be fine here if you’re already heading for the Off Licence on your first day!

Val

[Moderator]

Hi Allen, lovely to meet you. I am sure you will find this site very friendly and supportive. Karen x

keep it quiet allen, but val (the mod) is partial to the odd tipple while on duty (she hides it up her sleeve sshhh)

wait til you see her do the can can!!!

x

Hi Allen,glad you have joined the forum.

Cathy

I wish!!!

[quote=“zelda”]

we could do with a new bar person allen. trouble is we all drink but never cough up! hic

(can you tell i dont get out much lol)

[/quote] LOL, no prob I’ll see if my old corporate credit card is still active, if it is then you have a new bar person but please bear in mind any more than two orders at a time and there will be some bizarre cocktails as I get the orders mixed up :slight_smile: Allen x

Hi Allen,

Welcome aboard, everyone on here is so friendly and help each other as much as possible. If you want to rant, then rant, if you want to tell us good news that’s great. It’ll be nice getting to know you. It’s good you’ve gone for years without knowing, that’s what happened to me and for that I’m grateful.

Janet

x

Hello Allan, I currentally got dignossed too, I was dignossed in December but got a dignossis of Highly Active RRMS… When I went to the shop, to go and get a bottle of wine, the lady looked at me and said “sorry hun but I cant serve you” I said “WHAT DO YOU MEAN?” and she sed “well it looks like you have had enough already”, I said “look lady I aint even had a drop yet” So how could I of had enough? and she said “sorry its just the way your acting” and I said whilst walking out the door " well sorry for having a neurological disease which happens to be MS" and slammed the door as I left.

I felt so intimidated, as all I was after was a bottle of wine!!

I havn’t let it stress me though, as I know if I let it get to me I would end up really ill.

Hope things go well for you though, we are all in the same situation so come and talk when ever you need to, as we all know what your going through :slight_smile:

Kylie x

[quote=“Val”]

I wish!!!

[/quote] Ahhh and there I was thinking wine, dine and a show all on my first day on the forum, what a lovely welcome :slight_smile:

Hi Kylie I have also been diagnosed the same with profound brain stem activity. All I know is you can’t make a good letter with the acronym. Had JC test earlier so just waiting, I know that +ve or -ve I will take tysabri. Is that what you got as meds or gonna have? Mike

Hi Allen A very warm welcome to you. You will see we are all one big family here. Take it easy Mike

Thanking you all for your kind words of support and lovely warm welcome. Janet, love your pic, she is Beautiful. I may leave my rant until my feet are formally under the table…lol, I should have put on my hobbies " enjoys getting on soap box…but only on special occasions of course :wink: Kylie, Yup I get the"are you p*ssed?" as on a bad week, (apart from the usual stuff) too much stimuli tends to make my brain freak out and close down some functions, making me stagger, lose balance become non coherent and almost go into a weird survival mode with a singular thought process mainly being “I must get home to my sanctuary” about this time the blood flow to my left arm is greatly reduced and then I fall on my bottom with slurred speech ect…and they then say " oh see, I was right told ya he was drunk" Grrrr Hard as it can be, I try to maintain that as long as those whom are important to me know the truth, then everything else is ‘almost’ irrelevant. Again thank you to all for accepting me in to your family. Night to all, catch you tomorrow. Allen x