Leg ache/pain

So first thing, lets all agree that this is nothing to do with Lymphoma - a group ((hug)) agreement thing.....is that weird?

Your body just keeps giving you extras but not the bonuses you actually would like to get but some positives.......at about 1 year post SCT my consultant had a clear out of my medication. I did not like it initially as I had got attached to some of them and had a little withdrawal to deal with but after a week or so did feel much better in myself and you get an early Christmas present :( 

I do hope that they can find a sulotion quick as it sounds like a crap deal........the buttocks off the chair thing is something I lived with for years as that was one of the areas my skin tumours would develop so basiclly had to turn like a dog before sitting having a look at the landing site :( 

Lets get to the bottom (sorry) of this.

((hugs))

Hi Lynda

This all sounds pretty rough, it's awful for you, as if this blessed disease is not hard enough to cope with.

I wondered if it's worth asking the opinion of the 'ask the expert' on Macmillan website? Other than that I'm unable to offer any real advice.

I hope you get sufficient pain relief and some answers soon. 

Best Wishes

Tina 

Hi all, I've pretty much cried my way through Xmas. Nerve conduction tests on Xmas Eve with neurophysiology consultant. Tibial nerve supplying lower leg motor and sensory loss fairly complete. Has confirmed there's a sciatic nerve problem and thinks it may be linked to lymphoma which apparently can spread into nerves. I have tried googling as I didn't think ?(naive) that one could relapse on maintenance having had stable disease in may. Still no lumps and bumps or anything else. Consultant also mentioned ankle splint (it is .quite unstable), avoiding contractures and that I was unlikely to get use back. Totally worried me as I am so dependent (aren't we all)) on walking and driving. This has been going on and off since August with vague leg pains. Nights are still terrible. pain managed during day and moving about. I'm pretty devastated and will discuss with CNS tomorrow if she gets my answer phone message.

Lynda xx

Soft ((hugs)) Lynda X 

Oh Lynda, relapse may be possible at anytime sadly, however you don't know for sure that's the case ? I assume from the post and at this stage its a possible, so fingers crossed its not. Did you have methotrexate if I remember correctly as part of your plan ? and was that precautionary?

Hope you manage to chat to the nurse tomorrow, did the consultant say how he/she would follow things up as NHL in the peripheral nervous system does exist but is a new one for me .

fingers crossed

John  

Hi all...update....saw haematologist today who doesn't see my leg problem as lymphoma pattern but mentioned neoplastic syndrome...had to Google that one....b****y he'll...this disease keeps on giving:(

Referred me to neurology and will have a pet/ct

Also mentioned it could be chemo related ( finished Rchop 1 year ago)

Good thing was I found someone else with follicular lymphoma whilst I was having my rituximab!

Happy new year.

Maybe I should change my name to Limpy-run-lope-hop Lynda

Doesn't look as though I'll be doing much riding:(

Some Highlander ((hugs)) to you Lynda and lets look for the New year to bring a new way forward in this x

Well, result from .pet scan reported to me over phone by lymphoma nurse....

Mass showing on hamstring ...long and thin....could be nerve

Now await biopsy and if it's lymphoma prepare for DHAP and stem cell transplant (( I was liking having hair)

If it's not lymphoma....imagination working overtime

I Will Not Google...I'm scared

Lxxx

Hold on tight Lynda xx

Regardless what this ends up being and the journey that it takes you it can be won, yes not much consultation I know but I do remember these crossroads well xx  

Hi Lynda

Thinking of you stay strong xx