I’m sure you’re lovely people, but I’m sorry to be meeting you under these circumstances! Bit about me: female, 44, 2 kids, oh yes and RRMS. I had a swift diagnosis in September, following a nasty bout of transverse myelitis (completely lost sensation in lower half of body, could barely walk). In-patient for a week with lumbar puncture (never again) and MRI and quick RRMS diagnosis. Course of steroids, yuk! Previously, 2 years ago, I’d had optic neuritis and had MRI for that. Optic neuritis cleared but on comparison of scans, it was apparently an easy conclusion for the neurologist to come to. More lesions in brain and cervical spine apparently. Another relapse followed swiftly in December. Where I am now: on copaxone, pregabalin for nerve pain. Emotionally- rather shell shocked and trying to come to terms with changes in my life. Physically- exhausted most of the time, though I can track extreme tiredness over the last 12 months or so. Finding it hard to walk in a straight line, which my daughter finds hilarious, except when she’s walking on the ‘wrong side’ and gets knocked over! Concentration rubbish, sensible conversation rubbish, writing rubbish, co-ordination rubbish! However, having said all that, I do so want to remain positive and upbeat about my life and my future. It’s lovely that you’re all so supportive and I’ve been reading this forum for months, just never posted.
HI Cathy and welcome to the site. I’m a newbie too - got my dx at the end of Nov, and yes it takes a while to get your head round this new life style that’s been forced upon us! I saw the MS nurse for the first time a couple of weeks ago and she was a big help. ‘Pacing’ is extremely important, I was told, and makes a BIG difference - so that’s what I’m trying to do at the mo!
Take things slowly, be kind to yourself and have as much rest as poss … be grateful for the good days and remember when you’re having a bad day, that it won’t always be that bad. A big ask I know, but best to take things a day at a time.
Talk on here any time, 'cause folk are soooo helpful.
Thank you Hazel, I make the mistake sometimes of thinking I’m OK and doing too much, which actually isn’t all that much, then suffering for it! Have lived 44 years at my pace, now I need to learn how to live at a pace dictated to me. Not easy. Thanks for the advice though, am glad I signed up!
I’m also new to the site, have been told I have MS or something along those lines, am waiting to see neuro but mri shows lesions and I have loads of symptoms, spinal team are certain that’s what’s wrong. I’ve also found it hard to take in and stay positive, reading entries on this forum helps, just knowing that you’re not alone is helping me. At first I didn’t want to comment on other people.s posts but after I had replies to my introduction, I realized how much each one meant and have found everyone so understanding and supportive that I now try to respond to some too. I also find myself really forgetful, I even got my age wrong when I introduced myself. I am in fact 43, and like you trying to find a new pace that suits my current energy levels. I wish you all the best, and hope you can stay positive, but here they don’t seem to mind if you have the odd rant and understand how you feel a lot better than your family do.
Hi Cathy, welcome to the site and well done for posting
There’s no getting away from it - adapting to such a big change as being diagnosed with MS is not easy I lived my life at about 90mph before I was diagnosed, juggling loads of projects & people at work, family, long hours, travel, etc. It’s more like 0.9mph now (actually, that’s far quicker than I walk!), but I can honestly say that life is still good. In fact, in many ways, life is better.
Maybe think about using a walking stick to keep you in a straighter line - it also warns others to give you a wide berth! It was my daughter who told me I should probably use one - she was getting fed up with getting banged into (:-)), but also didn’t like the looks and grumbling from others who thought I was just being lazy and/or inconsiderate for going so slowly and not in a straight line. It does help me to go straighter too - it’s my feet that have forgotten where to put themselves, not my arms!
If you can get your fatigue under better control, you’ll hopefully find that your concentration and cognitive stuff improves. So smaller-than-bite-sized chunks, rest BEFORE you get tired, delegate delegate delegate, ruthless prioritisation, housework is NOT important, don’t sleep for toooo long during the day if possible (it’s important to keep your body knowing what’s day and what’s night), etc. It gets easier with practice!
Karen was spot on with the walking stick. It definitely helps balance and stops people thinking you’re drunk. Most even move for you which helps keep you going in a straight line. I got a nice light folding one on ebay and it’s one of my best buys.
Thanks for the fab advice. I have to decide whether to keep lumbering about, looking tipsy, knocking over small children en route, or follow the common sense advice and invest in a stick. My challenge is to try to accept that that being so visible with a stick is not an admission of giving in to MS, but more a way of taking control. Tough.
Lovely quiet weekend, kids with their dad. Pity am so tired! Changing the beds is the sum total of my activity this weekend. Ah well, means I’ll hopefully have the energy for work this week. This level of inactivity is definitely not the ‘normal’ me, so roll on the resumption of the ‘normal’ me. Not ready to wave goodbye at this stage!!
I too was just diagnosed in Oct 2012. On the whole I’m dealing with the dx quite well but like you am really struggling with the idea of using a stick. Came across some really snazzy ones while browsing in a garden centre yesterday and was, I admit, a tiny bit tempted but I just couldn’t take the step of picking one up and taking it to the till.
I’m starting physiotherapy sessions tomorrow so I’m hoping that this is going to help improve my walking and by the time I’ve finished I won’t need the stick anyway!!!
I used to be an avid walker and gym goer so am finding it really hard to adjust to my new level of mobility or should I say immobility!!!
After a six year long struggle; I have eventually had an MRI . The consultant rang me at home saying that I have a lesion deep in the right side. She is organising an LP. I asked what the lesion means and she said she that I have early onset of MS.
This phone call was back in August and im now waiting for the LP. I have rang a couple of times but I have felt the secretary to be a ‘bit off’ with me; she just told me that I do not need to ring them I will get my appointment in the post; i expressed that I appreciate I will ‘eventually’ get the appointment but since they have given me a follow up to see the consultant on the 6th October and I have not had the LP yet she wont have the results? The Secretary said no problem I will cancel the October appointment! I was left feeling a completely bloody nuisance not to mention my life on hold waiting. I appreciate the LP may not even give a positive result and can still be inconclusive; but i feel like im in limbo land; as much as i don’t want MS having a name for the way I am feeling helps me understand what is going on.
Did you not notice that the original post was from Cathy, but back in 2013. I should think she’s figured out her list of what to do with ones stick by now. (Although of course the importance of keeping a spare ferrule should not be underestimated!)
The person who resurrected the old thread was Babs, who was writing about being in Limboland as a result of having an MRI but experiencing trouble getting the LP sorted.
No need to say sorry for the post, which btw didn’t read like a rant.
You are clearly having a very difficult time, on the one hand being told you have MS and on the other, that you need an LP before the diagnosis is confirmed.
Does your hospital have an appointments team or a waiting list team? Mine does, and it’s surprisingly very good. Much more helpful than neurologists secretaries (I have generally found). Perhaps if you phone your hospital and ask for the appointments team, they may be able to tell you that they have the instruction to give you an appointment for the LP. If they don’t, or if the appointment is after the 8th October, I suggest you keep the appointment with your neurologist and ask for more guidance and assistance.
If s/he is happy to diagnose MS without the LP, then you should start talking about disease modifying drugs (DMDs). Also you should get the contact details of your MS nurse.
If you have the appointment with the neuro without having had the LP, then you’ll need to talk about hurrying that up, and also where you go from here. Ie you’ll need a further appointment with the neurologist after the LP.
I’m assuming you didn’t allow the stupid secretary to cancel your 8th October appointment.
Hi Sue; I did as you suggested, I rang her back; I told her that If i had a follow up before I had the LP what was the point if no test results? She seemed to soften and said she would ring me back; to her word she ring did yesterday; the LP is now on the 12th October and my follow up in November. Apparently the referral letter (which arrived yesterday dated the 18th August) says ?CIS.
Thanks for the push; sometimes we have to keep on the pressure don’t we; it may not be urgent for them but when our lives are on hold its like a year waiting.
I lived my life at about 90mph before I was diagnosed, juggling loads of projects & people at work, family, long hours, travel, etc. It’s more like 0.9mph now (actually, that’s far quicker than I walk!), but I can honestly say that life is still good. In fact, in many ways, life is better.