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Hello

Hello everyone

Just making myself known

I was diagnosed with RRMS within the last year and also have a rare condition called Retroperitoneal Fibrosis(RPF). Sometimes its hard to know whether how I feel is to do with the RPF or MS or the drugs I take. My MRI also showed up a mass on my parotid gland which thankfully is benign so I’ll be getting surgery there.

Any information or advice would be great.

Thanks for reading

Janice

hi janice

well you really have more than your fair share of problems!

are you on any disease modifying treatment?

post again with more specific hints at whet advice you need.

take care

carole x

Hi Janice and welcome.

Like carole said you’re having your fair share of health problems. I’m ppms so can’t give much advice on rrms.

Would you mind me asking if you know what has caused the RPF? Understand fully if you don’t.

My brother-in-law had a Benign parotid mass removed. All the best with that surgery.

Take care xx

I meant I understand if you prefer not to discuss it.

Thanks for your reply Carole

Im not on any treatment. I have been on predisolone for 2 1/2 years because of my RPF, initially on 60mg now on 3mg. Rheumatology who treat my RPF want me to stay on that because “Im a complicated case” with the added MS diagnosis. Im also taking methotrexate and other drugs to combat the side effects!

Neurology said they could prescribe but thought for the time being I didn’t need anything.

My MS became noticeable about 3 years ago - numb feet and twitchy legs. I ignored it but because Ive been at the Dr’s more often I happened to mention it hence the MS diagnosis. Over the years Ive had migranes which caused sight loss at problems at times which they say is part of it. Basically I always have a twitchy left leg when Im tired, my left foot drags, I get tired, I have aches in my arms, I have fallen quite badly so Im extra careful most of the time,probably more symptoms but I cant remember now.

I hear people talking about relapses. What is a relapse? Are there things I should be doing to keep well? Will my health go down hill?

Anything you can tell me would be great.

Thank you

Janice

Hi Blossom

Thanks for your reply.

I have no idea what caused the RPF. Its a 1:200,00 disease so the Dr’s dont really know. I think mine was caused by a car accident I had about 15 years ago which caused an impact on my lower back. I started having migraines after the accident which I always said were connected (could be the MS) and about 3 years ago I had really bad lower back pain which I attributed to the accident but which was the fibrosis. Diagnosis of RPF was tricky - I was admitted to A&E being violently sick and kept over 2 weeks while they tested - CT Scans, camera tests you name it they did it. Scans showed problems which my ureter and my small intestine looked odd. I was sent home for a week to return for a biopsy of my intestine. Biopsy was benign but they removed 2 feet of my small intestine as it had died because the mass had cut off the blood supply.

Anyway, Im lucky, the mass has reduced to about a centimetre, my kidneys are functioning and my bowel is in full working order.

Then I got the MS diagnosis which Im trying to fathom.

Then I got the diagnosis of the parotid tumor! Can you tell me anything about that? When they did the biopsy they told me whatever the result it would need to be removed. I said yes no problem! Then I checked and found out it wasnt a small operation - how stupid am I! Anyway Im waiting for them to call me back to discus.

Really sorry for the length of this reply - there is more but I think Ive gone on long enough.

Wonder what they’ll throw at me next!!!

Thanks again

Janice

Hi again Janice

Yes, the RPF could well be to do with the accident. Sorry to hear about all the problems relating to it, sounds like you’ve been through a really stressful and scary time. What a relief for you that there is no lasting damage to your kidneys and bowels.

I was first referred to neuro with chronic headaches and migraine before my MS diagnosis, so you may have a point about yours being connected.

I could tell you something about the parotid tumour but I am reluctant to do that. If you still want me too I can private message you but I think you should wait for the discussion with the people who will have all the right answers to your question. It’s not because I’m holding anything awful back, just think it’s for the best.

Hope you have plenty of family support.

Private message if you need to.

Noreen xx

Hi Noreen

I understand totally. I suppose if Ive gone through a bowel resection and all the other procedures I can cope with a tumour removal!!

Ive great support from immediate and large extended family. Hubby is great. We’ve had a lot over the past 3 years as he was diagnosed with a pituitary tumour which has been removed and he’s back at work. I keep wondering what we’ve done to deserve all this.

Think positive - there are people walking round with ticking time bombs not knowing if there is anything wrong. Least the medical profession know whats wrong with us! If that makes sense.

Janice x

hi janice

i can’t help with the other questions but blossom knows a great deal.

i can tell you about rrms.

there are periods of relapse when you may see a new symptom or see old ones getting worse.

basically there is no treatment other than steroids to speed up the relapse.

you may be left with some disability.

then there are periods of remission when symptoms settle down.

it sounds awful and it is really but i hope i haven’t depressed you.

we get by on laughter really.

the worse things get, the more i laugh and the sillier the things i laugh about get.

insanity is ever closer!!!

my best advice is to do whatever makes you feel a bit better.

hugs (((xxx)))

carole x

If you still want to chat about it after you speak to the docs I will be happy to. My brother-in-law is back to full health now and just going for routine follow up check ups

Great that you have plenty of support…makes all the difference.

Goodness, your poor husband too getting a pituitary tumour… it’s time you got a break! You’ve done nothing to deserve this Janice, you know this really don’t you?

Try and stay positive, it is hard but hopefully things will come good in the end.

Noreen xx

Sorry carole but if I don’t click reply on some post, I find it hard to remember what’s been written…rubbish slow brain and all that

blossom - i only mentioned your name because i don’t have as much medical knowledge as you.

sorry babe, it was only good stuff.

carole x

Thanks Carole & Noreen

Your reply explains why Rheumatology have decided to keep me on a small dose of steroids - awful things Ive put on so much weight but at least Ive stabilised and showing signs of reducing.

Im really quite lucky. Things could be so much worse.

One of my main annoyances at the minute is spasms. I get these when I wake through the night and when I wake in the morning. Any advice.

Janice x

We’re getting our wires crossed carole Lol I don’t know why you’re saying saorry to me.

I was saying sorry to you for pushing in my reply to Janice. In fact just ignore me because I’m just about out of brain cells today lol

X

I think I get it now but I never noticed your reply till now.

I want my mummy lol I’m all confused

xx

hi janice

baclofen is good for spasms and your gp will be able to prescribe them.

blossom

you’re getting confused because of all this fog!!

xxx

I daren’t say anything else for fear of causing more confusion Lol

My poor husband said I confuse him all the time-think I’m in a permanent fog.

I’m going to mix some more Hubble bubble toil and trouble in my cauldron heeheehee

X

blossom

don’t worry about the fog.

you bump into some interesting people when lost in it!

xx

Hi Janice

Welcome to the forum and sorry you have been suffering.

You will get lots of support and help from us. I have been using the site since diagnosis 12 years ago and have made many many friends who have been a massive help to me during the bad times. A lot of us are there whenever you need us.

I know what you mean about balance problems and spasms. I suffer with both and as said by others Baclofen is very good for the pain and minimises the spasms.

Looking forward to chatting with you more.

Shazzie xx

Hi and thank you Shazzie

I’ll ask my GP about this. Poor man, because RPF is rare that combined with MS completely floors him!! MS on its own, ok but he’s been known to say “sorry Janice I don’t know”!

To Carole, Noreen & Shazzie, thanks again. I can let off steam here where people understand. I look “normal” so despite great support at home nobody can feel what I feel. Gary & I went for a walk on Sat evening and because I could link his arm I walked further than I have done for a while but the last few hundred yards home were tough and even he noticed my foot turning in and dragging without being told. Most of the time my problems are invisible and its not good to moan too much.

Thanks again

Janice

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