Hi I joined the forum about 4 months ago and had a lovely welcome from folk, but I haven’t posted much since then as I realise so many of you seem worse than me so I figured I shouldn’t moan but just get on with it!!! Having said that things seem to have deteriorated over the last couple of months - walking has become extremely difficult, my legs don’t want to co-operate, they feel like they don’t belong to me, feel tingly and I soon end up very tired with lots of pain in hips / lower back. It all seems like an enormous effort at the moment, even though I’m trying to ‘be sensible’ ‘listen to what my body is saying’ and so on… I’m on holiday at the mo - just a few days away with my hubbie (who has had ME for 20 years, so struggles to do ‘life’ but is very understanding of my current limitations). I’m using a walking stick to get around, but finding it difficult to cope with walking just a few hundred yards - the effort and the pain is exhausting! I’ve recently seen the consultant who has arranged for another MRI - my first one was 18 months ago when I lost the feeling in my legs and showed up lesions / demyelination, the outcome being a diagnosis of CIS. If this next MRI shows up further lesions will I get a diagnosis of MS do you think? I was never given a report from the first MRI, but if I remember correctly there was a mention of damage at 4 and 5 - would this be vertebrae?? Can I ask for a copy of the report from 18 months ago? Also, a further complication for me is that I have had osteoarthritis in my right hip for some time - an xray in June resulted in a diagnosis of ‘moderate osteoarthritis’ - so I’m wondering how much this is affecting things. Has anyone out there got both arthritis and MS type symptoms? Sorry there’s so many questions, but just wondering if anyone can help me with any of this please?
Sorry to hear that things have got worse 
The answer to the lesions question is possibly: if there are more lesions then it is evidence of new activity, but they will have to be in the “right” places to definitely satisfy the MS diagnostic criteria.
The 4/5 thing will be about somewhere in your spine. It might be the vertebrae, but it could also be the spinal cord at the level of those vertebrae.
Yes, you can ask for a copy. You are legally entitled to copies of anything in your medical file.
I’m sure it’s possible to have oesteoarthritis and MS. Rotten luck though
I hope the new MRI will clear things up for you. Enjoy the holiday (less walking I think though!) 
Karen x
Just to say, please, please never think that you shouldn’t be posting because there are people worse off than you. Going by that logic, the only person who should be posting on these boards is that one unlucky person who is in worse shape than everyone else! It would be pretty quiet on here.
I hope you and your husband enjoy your break, and that the MRI takes you closer to some clarity about what is the matter.
Alison
x
[quote=“alison100”]
Just to say, please, please never think that you shouldn’t be posting because there are people worse off than you. Going by that logic, the only person who should be posting on these boards is that one unlucky person who is in worse shape than everyone else! It would be pretty quiet on here.
Alison
x
[/quote] Hear hear! Kx
Just to add what Karen said; yes under ‘the freedom of information Act’ you are entitled to any reports. This includes a DVD of your MRI, costs about £10 but well worth it; in case they loose it for comparrison with any future MRI.
George
My local hospital charged me £35 because it is their property they can charge you what they like !!!
It’s makes my blood boil its a money making venture didn’t even get a written report with it !!!
hi, MS like symptoms and oesteoarthritis? Yes, except in 2 separate bodies! I have the former and hubby has the latter, with the extra supplement of rheumatoid arthritis thrown in for good measure!!!
I would`ve suggested that your lower back/hip pain could be caused by poor support cushions/posture. But I think your arhtritis is to blame for that, as you probably know, eh?
Over the years, ive had bouts of severe back pain and it has been down to support/posture. When this happens I usually try new cushions and it can help sometimes. Maybe you could think about that too, eh? Ive even changed my wheelchair a few times, as buying them myself has done me no favours. Now I use Wheelchair Services.
As someone else has said, never put off writing on the forum. We are ALL here for support, help and even the odd giggle too!
luv Pollx
Hi and thanks for all your comments and support. Alison100 you made me smile - and I know what you mean I guess I’m just not used to asking for help - I’ve always just got on with stuff, even when life has been difficult… but this is something else and there are times when I feel like I’ve got nothing left to cope with it. So thank you to all for your support. I was thinking of a written report re the MRI - didn’t realise it could be a DVD - unlikely to make the top 20, so how on earth do they justify £35 ?! Anyhow I will mention it to the GP next time I see her. MS43 - sorry to hear your husband has osteo and rheumatoid arthritis - that’s pretty grim. I think for me, some of the hip and back pain is arthritis, but not convinced it all is - hence my question. I guess it’s a day at a time and see what the ‘experts’ come up with! It’s been a relief to have a few days away and be able to do relaxing stuff - back to work on Monday (after catching up with the washing etc) so will see how things progress. Hazel
I’ve seen my GP today - follow up appointment after last visit to the consultant. He’s instructed the doc to prescribe Anatriptaline - 10mg for a week, then increase by 10mg per week until I get to 50mg. I’m not too keen on taking it, but will do so as I really feel I could do with some help now. I know that some of you take it, so just wondering how you find it? It’s supposed to suppress the nerve endings I think. Also asked about the MRI report, but the GP hasn’t got this as it went to the consultant apparently. She said that I had a transverse myellitis at T9 / T10 which got diagnosed as a cninically isolated syndrome. Does that make sense to anyone please? If it was isolated, why have things got worse??? I suppose the MRI which I’m to have next week will shed some light on things
Thanks, Hazel
Amitriptyline is an anti-depressant that is an effective neuropathic painkiller at lower doses so a lot of MSers use it for pain and sensory symptoms.
The main issue with amitriptyline tends to be that it can make people very drowsy. This can be a real benefit if someone is having sleep problems (take it in the evening and it will zonk you out for the night just as well as any sleeping pill!), but can be an issue if you need to get up early for work (for example).
Don’t feel obligated to follow the neuro’s instructions to the letter btw. Sure, start on 10mg and increase it slowly, but if it’s working at 30mg (for example), don’t increase it again - find your own level; if you are finding side effects a problem, increase the dose more slowly; and if you get to 50mg and it’s not working after a week or two, then go back to the GP and ask for either an increase in dose or to try something else. (We are all very different and nothing works for everyone so finding the right meds tends to involve a lot of trial and error.)
A lot of people swear by amitriptyline; I hope it works well for you too
Karen x
Sorry, I forgot about the MRI bit.
When you say “She said that I had a transverse myellitis at T9 / T10 which got diagnosed as a cninically isolated syndrome.” do you mean that’s what you were diagnosed with 18 months ago?
If yes, then it means that you had a lesion in your spinal cord, just under your bra strap level or thereabouts. This is called transverse myelitis when the lesion is at least as long as two vertebrae. Clinically isolated syndrome (CIS) basically means a one off episode of MS. The odds of people with CIS having a second episode, and therefore being diagnosed with MS, is about 50/50.
If no, then there is something amiss because someone cannot be diagnosed with CIS twice.
Hth!
Kx
Hi Karen - and thank you so much for your really helpful reply. I will see how things go re the amitripyline and stop increasing the dose hopefully sooner rather than later! With regard to the MRI results - yes the CIS diagnosis was what I rec’d 18 months ago. Your explanation re both issues has helped no end - so thank you. You do a wonderful job on here and seem to have the knowledge and understanding to help loads of people - keep up the good work!
Hope things are not too bad for you at the mo.
Hazel x