Hello to all good friends, having spent the last few days just trying to relax after my op, the whole ms has really risen to the core. I have spoken with ms nurse as you all know and she really thinks it is a psuedo lapse due to all anxiety worry from the cancer. I know I am driving everyone daft but I think it is more than a psuedo lapse. I have never had a relapse so have been so fortunate in the 7 years since diagnosis but I am terrified I am now going to be left with the dragging leg and ankle not even bending(cannot even wiggle toes). The nurse on the last call said she would let neuro know and if he thought different she would call back. So So scared as I get results to determine treatment plan on Thursday and find out if chemo or radio and I need to be fit to tackle this. Can I recover from this, has anyone had similar and got back to themselves. Sorry for yet another rant.xxxx
hi marydan
i suggest that you follow the advice of your ms nurse.
it is more important that you deal with the cancer first.
physiotherapy can help with your leg and ankle once you have dealt with chemo/radio.
best of luck
carole x
Yes Carole is right you need to concentrate on your cancer treatment first and then worry about the rest , I know it is easy for us to say . Try and rest as much as poss and maybe when you know more things will calm down a bit .
All the best with everything . Katy
If it helps, I’ve been there and done it with breast cancer (was diagnosed in Sept 2009). Although I prob had MS at the time, I hadn’t been diagnosed. If I can help with anything, please drop me a message x
julia x
Hi,
I’m with Carole and Katy. Try to separate the cancer treatment and the MS.
If you can separate them and you see them as two entirely different problems, they’ll be easier to deal with, emotionally.
My style is to imagine two boxes. I put MS in one box and Problem No. 2 (in your case,the cancer treatment) in the other. Then just open one (imaginary) box at a time.
It makes life a lot simpler.
Anthony
Thank you all for help/advice. I am very positive about the cancer treatment plan and results and all my family say I have the right attitude to beat this. The ms flare up is actually causing me the most distress as I cannot walk just drag my leg, have not left the house not even out the back as I am a danger of falling. The foot just sits, will not let me bend it, wiggle toes etc and this morning I actually wet myself and I am aghast. If I cannot even walk how do I think about this next fight. sorry yet again.
Could this be me now or do people actually recover from this
If it is a relapse it should get better with time,try not to stress over it.I do guided imagery that relaxes me and helps me cope with stressful situations.I had a massive relapse in febuary and its helped me cope better.you are dealing with a lot at the moment,and you must be stressed anyone would be,but trying to relax more really can help the ms.
J x
Hi all, just a quick update. I had resigned myself to relaxing and trying to focus on here and now.
Ms nurse called this morning and asked how things were and said that she had spoken with my neuro who said I was to get an urgent appointment with the gp to rule out anything else as this acute episode may not be ms related???
Kinda scared I rang gp who seen me at 11 and I only made it thanks to my daughter and niece helping me to their car and helping me into surgery.
The gp was shocked to say the least and examined me then quickly went on the phone to ms nurse/neurology and finally to the on call neurologist to see if I could be admitted.
My daughter was with me and we were upset but tried to stay focused. The outcome was that because I have the results of lumpectomy and future cancer treatment on Thursday they agreed that oral steroids starting today and a neuro appt then sent out asap.
Bloods were taken and urine checked. Urine fine which I thought and bloods for infections etc taken at neuro request.
The gp is not impressed with ms nurse. I cannot believe I am on steroids but I will do whatever they think is best.
They said they would take me in if eyes, sensory were affected. I am hping against hope things settle.
Thanks so so much for all help and advice. xxxx
Hi all, just a quick update. I had resigned myself to relaxing and trying to focus on here and now.
Ms nurse called this morning and asked how things were and said that she had spoken with my neuro who said I was to get an urgent appointment with the gp to rule out anything else as this acute episode may not be ms related???
Kinda scared I rang gp who seen me at 11 and I only made it thanks to my daughter and niece helping me to their car and helping me into surgery.
The gp was shocked to say the least and examined me then quickly went on the phone to ms nurse/neurology and finally to the on call neurologist to see if I could be admitted.
My daughter was with me and we were upset but tried to stay focused. The outcome was that because I have the results of lumpectomy and future cancer treatment on Thursday they agreed that oral steroids starting today and a neuro appt then sent out asap.
Bloods were taken and urine checked. Urine fine which I thought and bloods for infections etc taken at neuro request.
The gp is not impressed with ms nurse. I cannot believe I am on steroids but I will do whatever they think is best.
They said they would take me in if eyes, sensory were affected. I am hping against hope things settle.
Thanks so so much for all help and advice. xxxx
I’m glad you’ve had some sensible treatment and that you’ve got steroids to hopefully speed up the relapse recovery. Just be aware that steroids won’t bring about a miraculous cure. They give you a horrible taste in your mouth so it’s as well to get some mints or something. They can also give you gastric symptoms, so if you’re affected, phone your GP and get them to prescribe you some omeprazole, or take Gaviscon.
Steroids can also play havoc with your sleep so get ready to have a few restless nights. They have the effect of making you a bit ‘up’ and possibly jumpy which is why people often have trouble getting to sleep.
After a course of high dose steroids, it’s common to feel a bit bruised. They’re a heavy duty drug and do affect your whole body so can leave you feeling a bit worn out.
Having said all of these bad points about steroids, with a bit of luck, they’ll sort out your dead leg and other symptoms fairly quickly. And hopefully you’ll get your neurologist appointment soon.
Best of luck for Thursday.
Sue
Thank you so so much fro everything and I truly mean that. I am not expecting everything to go away after steroids and know it may take a few more weeks and even then there may be some permanent damage left. For now I will do what I am told and hope, be positive and patient. From my heart a big big thanks for putting up with me .xxxx
Hello all my friends, I had the results from my lumpectomy and cancer treatment plan yesterday.I was very very lucky and feel fortunate to have been told the cancer that was stage 2 is gone with clear margins and the lymph nodes are clear. I meet with the oncologist on wednesday to discuss my radiotherapy plan and start tamoxifen tomorrow for ten years. The steroids have started to work with the relapse and my hand is coming back,I can bend my ankle although the leg still not quite right. The gp says hopefully it will settle as the steroids continue to work for 3 months after I finish them. I meet ms nurse in October and neuro Nov which surprises me that they do not want to see me as I have had the relapse. I do not know if I can begin any dmd as I now have the cancer treatment plan starting and tablets to take so will just have to wait and see. This is my first relapse ever since diagnosis nearly 8 years ago so will just have to ride this storm for now. With all my love and gratitude always. xxxx
Oh I’m so pleased for you marydan.
Hopefully that’ll have kicked the cancer into touch and you can concentrate on getting rid of the relapse and onto a DMD soon.
And as your relapse symptoms seems to be starting to improve, you can only expect more improvement over the next weeks and months. Don’t expect an overnight miracle but remission can take time! One day you’ll just wake up and realise that your leg feels a lot better.
Sue
Hello all my friends. Just an update on the relapse front. The steroids have really helped and although I am not and maybe will never really be 100 % I am much much better. I can use my hand, bend my ankle and go to the loo when I need to.
I go to the oncologist on Wed am and will learn about my radiotherapy plan then. I also started tamoxifen which I will take for 10 years. I now know a dmd maybe the best option for me but with all the cancer drugs./treatments I will be taking I do not know if that will be ok to start. Oh well I willl just have to wait and see what is in store for me. Thank you for helping me throught htis very tricky,scary time of my life. xxx Marydan