HI all
As a few of you may have read some of my posts or replies you may know that this is all very very new to me and still very frightening.
I wake up thinking of MS, I lie in bed at night thinking about MS. I spend most of my day thinking of MS or watching you tube videos about it and then come on here t see what’s new.
I am getting myself into a pretty dark place I have to be honest. I am well aware that there is nothing good about MS but does anyone out there have any positive stories or good news they can share.
Everything I see, read or watch is understandably pretty negative and never really good news and I must admit to being the glass is half empty. Every silver lining has a cloud type of guy 
to start with.
Anyway apart from all my fears and worries I am lucky enough to now have my daughter and 5 week old grandson living with me so MS can take a back seat if not for only an hour or two each day.
Anybody else have anything positive to share MS related or not.
Best wishes to all.
Dave
I guess that the good news , MS wise, is that year on year new treatments become available. When I was diagnosed, some 18 years ago, there were just a couple of treatments. The newer ones are more effective than the old ones. In addition, there does seem to be progress on remyelination treatments. Who knows, in 5 or so years we might be getting remyelination drugs?
Nothing to do with MS but certainly good news here on the west side of Scotland , we are finally getting a run of dry and sunny days. This is after a very very wet August with something like two and a half times the average amount of rain. Nice to be able to go into a sunny dry garden!
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Hi DaveC336
What you’re going through is totally understandable and I’m certain that I and many others on here can relate to everything you say.
I’m quite new to this tough world of MS myself (2 years diagnosed, 4 years tests etc), hang in, it’s all about taking time to absorb everything going on, ask your neurologist, nurses and the team all the questions you would like answers to.
I’m sure your world has been turned upside down!! For me, it’s a case of living life at a much slower pace, planning things rather than any spontaneity now, but still doing almost everything we hoped to do just takes more time ha ha!!
Life doesn’t stop, it’s just slightly different!
Keep viewing the amazing information on here from people who can truly understand what you are going through, it’s a superb forum full of the support we MS’ers need I think.
I wish you all the very best.
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Hello Dave,
How’s it going? One positive for me is managing to reverse my bladder leakage problem, over the last few weeks. 
No more little embarrassing musty wet patches, after every cough, sneeze or sudden movement, which is a relief. 
Now if I can get my pins mobilising just as they used to do, maybe I can hop, skip and jump into the next paralympics; every marathon starts with a single step. 
Keep up the positive vibes, mate!
Best regards,
JP
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Hi Dave
IT is totally natural to be feeling as you do. I was the very same 16 years ago when first diagnosed, it took over my every thought and try as you do I know I always managed to find or read about the worst case scenarios.
I focus on what I still can do and not what i cannot.
Things have changed but are manageable and I am very grateful to be the way I am.
Always know the people on this site are amazing and always there to help when they can.
Much love
Maryx
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Well I have recently turned 70. Next week we are off on a trip to Germany with my new one piece folding scooter.
With these things you can go anywhere, trains, planes, trams, cruise ships, you name it.
Only downside is that I now have 2 folding scooters - my original one (Di Blasi R30) developed electrical issues recently.
At least I have given myself a fair amount of contingency for these trips!
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Know exactly what you’re going through… I was diagnosed in 2013, so a while ago now - just decided that the best way to deal with it is to not to get obsessed with it, ignore it as much as possible, (but being sensible about when to stop ignoring it) and carry on doing what you’re doing. Life goes on - maybe not exactly the life you thought you were going to get, but it can still be good.
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Dave, there might a few ‘all for the best in the best of all possible world’ Pollyanna types out there who take an MS dx in their stride and relish the challenge of a wonderful personal development opportunity. I’ve never met one, though, and would probably walk away nervously, backwards, if I did. Wouldn’t you?
It’s just every sort rough, being where you are now, and there’s nothing I can say that will make it any easier. All I can say is that for me, and I think for most of us, life gets nicer again. We’re resilient creatures and we get accustomed to the new normal (and then keep on doing so). But that adjustment can be a brutal process, so don’t be hard on yourself for feeling low in spirits at the moment. Enjoy the joyful family moments as they come, and hang on in there.
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Thank you VERY much to all that replied it is hard to explain the gratitude I have for the people who took the time out of their day to respond and help.
I do feel a little better I have to say.
There are some truly nice people one this forum, even so I have to say that I wish I never became a member of the MS club. No offence.
A nervous night ahead as I have my first appointment with Neurology tomorrow since my diagnosis.
I am hoping they can recommend and hopefully get me on some kind of DMT but I really have no idea what to expect.
I have typed out all my symptoms and timescales as accurately as I can remember from before and since my MRI.
I started initially with mild tingling in my left arm and a loss of balance when walking. I would love to just go back to that if I could. ( Dream on )
Since my MRI I now have stiffness in my arms, legs and occasionally stomach along with a feeling of weakness in arms and legs ( Thighs ) + fatigue
This all seems to have started during the recent warm weather. I never had these issues prior to the MRI. Is this my first relapse ??? I don’t know.
Hopefully tomorrow will possibly shed some light and also answer as many questions as I can think of to ask.
Again many thanks and best wishes to all.
Dave
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Good luck today DaveC336, I really hope you get the news you want.
Jean
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Hi DaveC336
As others have said, hang in there, Dr Google likes to put forward the extremes of MS information - the worst case scenarios and the ‘inspirational’ doing everything magnificently despite having MS brigade.
Warm/hot weather can make our symptoms worse temporarily, with cooler weather settling in hopefully your symptoms will ease up.
Hope the Neurology appointment goes well.
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Well that was my first appointment done. I saw a different neurologist from my initial visit but I have to say I was very impressed and we got along pretty good, under the circumstances.
He took me through my scan results and explained all as much as possible.
I didn’t really want to know at first as ignorance is bliss but I decided it was best to know.
He carried out several tests on balance, walking, eyesight and many more reaction/response and ability type tests. Also for some reason he requested even more blood tests. I’m thinking of getting a tap fitted on my arm, I’ll be see through at this rate.
All this was done at a steady pace and at no time did I feel rushed.
He himself stated that he is very confident that it is MS, based on the MRI results and also my symptoms but also that he would sadly need a lumbar puncture to confirm the diagnosis officially. I was hoping to avoid the need for that as for some reason the thought of it absolutely terrifies me.
As for DMT he is keen to get me started and mentioned Kesimpta which I am glad about as I was hoping for this as an outcome. He did say though that the decision is not totally his and that all the consultants would decide together which DMT would be best in a meeting at a later date.
As things go I think the appointment went as well as I could have hoped for to be honest, I actually feel a little better today ( not as stiff ) due to the rotten colder weather probably.
He has said that my next appointment with him would be in 12months time but he would keep in touch by letter before that.
I have to say that my treatment by both my GP and also Salford Royal Hospital has been absolutely fantastic. I know others have not possibly been as fortunate with their treatment wherever they are based but I really cannot complain in the slightest, they have all been amazing.
I’ll update again later when decisions have been made.
Best wishes to all.
Dave
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That all sounds good - thank you for updating us.
Don’t worry about the LP. My neurologist explained that he likes to have as complete a clinical picture as possible on the file at the time of dx, and that made sense to me. Maybe yours is from that same school of thought. The procedure itself was fine (the anticipation was the unpleasant bit!)
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Same here! I was scared stiff of the LP… but it wasn’t anywhere near as bad as I had thought. Don’t deal well with needles… but as you have your back turned to the action you don’t have to see it happening! But do take them seriously about laying flat/resting for the required time afterwards, and drinking lots of water/juices, Good luck!
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Hi DaveC336,
So glad it went the way you wanted and I hope they decide sooner rather than later about the DMT, like other’s have said, don’t worry about the LP, I decided when I was told I needed one that I wouldn’t goolge it, or listen to anyone else, I would have it done and it was a walk in the park, easy. Good luck to you and keep as well and as positive as you can, not easy at times, but that’s what I try to do, I’m 18yrs in now and have SPMS.
Jean
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Thanks Jean
He did say RRMS in the meeting so that a small positive I hope. I’m not sure how he came to that conclusion though but I won’t argue with him.
Thanks also Fracastorius and Alison100
Yes he did mention possible headache symptoms that could last from an hour to even days. Fingers crossed on that one.
Dave
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The Barts guide to LP is worth reading, particularly the bit about using a atraumatic spinal needle.
Your Lumbar Puncture at The Royal London Hospital (clinicspeak.com)
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