So very sorry to bother you all again, I spoke yesterday with my ms nurse as I said and she went through all my symptoms and thinks it definitely is to do with the upcoming operation and all the recent upset that is causes my problem. However today I can barely do buttons, my leg is draggin and i am so so scared the op on monday will be cancelled.I am trying my hardest to lift my leg when walking but it is not co-operating. I will go for whatever is needed on the ms front once I get this op and have this lump removed and cancer treatment planned. I hope this will pass but I am so so scared. Has anyone had a really bad time like this with legs not working. xxx sorry for rabble
Thank you for replying to me, its a lumpectomy with 2 nodes being removed on Monday. I spoke with ms nurse yesterday and she seems to think it will settle once op is over but I am so so scared as I wold hate the op to be cancelled as when they seen me last 3 weeks ao I walked perfectly. THANKS XX
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anxiety definitely provokes activity in my MS.
something mildly dreadful, such as a trip to the dentist, can cause one of my feet to start buzzing intermittently.
this is, in itself, no big deal, but given the prospect of undergoing full blown surgery, i can see my leg(s) becoming quite useless.
i’m sorry this post perhaps is of little comfort to you; but at least this phenomenon is not limited to just you.
incidentally, the moment i am out of the dentist’s chair, my foot buzz is nonexistent. I am such a wimp!
good luck with it all.
at the risk of sounding a bit flaky… try some positive thought and meditation… mind over (white) matter time!
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Thank you so much for taking time to reply, it really does help xx will let u all know how it goes.xx
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I posted that so many times, sorry xx
Sorry once again but just wondering if indeed this turns out to be a relapse and not stress induced due to all the other stuff going on, will I need steroids if things stay the same and I am too late to start a dmd. xxxx
That being said it will depend if the dmd is going to be compatible with the cancer blocking drug,tamoxifen and also radiotherapy. xx
Hi Mary
If your op is on Monday, then I get the feeling that you’ll have to get through that before you can address the MS issues.
If you are having a relapse, then steroids might have been the answer, but not with an operation scheduled this soon. Keep in mind that steroids don’t actually cure a relapse, they will only help to shorten the time it takes to get over it. And even then, they don’t always work.
Equally, DMDs at this point won’t make any difference to a current relapse. When you’ve reached the other side of the operation, and the Drs have removed your lump etc and analysed it to see how virulent it is, then you can start thinking about DMDs.
Do you think you might be trying to distract yourself from worries about the operation by worrying about MS? If you are, it would be perfectly normal to do this.
I wish you the very best for Monday. Keep talking to us about your worries and fears, I’m sure that collectively we’ll do our best to help.
Sue
Thank you so much, I am sure it is anxiety but my leg is really bad and dragging, need to sit and lift my leg up with hand befoe I dress, etc tried to write a shopping list for my poor hubbie to go for but even my hand does not grip the pen. Sorry once more but I truly hope I can get back to some normal, how quickly life changes. You may well be correct about trying to distract myself but it is definately unintentional.xxxxxxif it is how powerful s the mind . love to all
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Hi marydan .
stress and hot humid weather exacerbates my leg problems . Search the forum on tips to keep cool during this clamy weather :)u
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Hello to all, well home from hospital after lumpectomy and node removal. Still a bit groggy, but otherwise not bad at all.What really is getting to me is my right side.i.e leg and now hand have gone totally wacky. I know ms nurse said she thinks it is a psuedo lapse and should pass but I am so scared this is me now. I can’t drive due to wound site but could not as ankle will not bend, toes won’t even bend I am so scared. The treatment for the cancer will not affect anything I need for ms so I will give the leg/hand until Friday and will contact ms nurse/gp to seek advice. Sorry to annoy you again.xxxxxx thanks for all help
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Hi marydan
Don’t worry, you’re not annoying.
Glad your operation went well and you’re now out and recovering from that.
So, now at least you know that your symptoms weren’t due to stress/worry or any other mind over matter thing related to the lumpectomy.
Btw, how does the MS nurse know it’s a ‘pseudo relapse’ and not a ‘relapse relapse’?
I would actually give the symptoms till Thursday; if the MS nurse and doctors agree that steroids are in order, that gives you/them a day to consider the matter before actually prescribing. Otherwise, they could take until Monday to actually issue a steroid prescription.
As long as you are still in the relapsing remitting phase of MS, then you would normally expect some recovery from the relapse regardless of the steroids. The idea of steroids is to shorten the length of time a relapse lasts, they won’t make any difference to your actual remission from the symptoms. And if the doctors don’t think you should have steroids this soon after an operation, then you’ll have to wait it out I’m afraid. Physiotherapy might help down the line a bit as well.
Hopefully now you’re over the op, things may settle down a bit anyway.
I’ll keep my fingers crossed that the lab results from the lumpectomy are OK.
Sue x
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Hi, please don’t apologise for posting anything. If you’re worried, then you’re worried. The point of this forum is for us to try to share our worries and bolster each other in difficult times. Most of the time our lives are difficult, but when even more crap is dumped on us, then we need each other even more!
Hope things seem a little better today babe!
Love Poll x
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Thank you so much for listening and advising. Spoke with the ms nurse again this morning telling her everything, even the fact i could not do my bra as my hand so weak and because I have to keep my wound sorted it is becoming unbearable. The nurse is still saying she thinks it is the stress/anxiety which has caused the flare up. I thought they may have wanted to see me and I would have got over to the hospital but no, she will speak with my neuro and call me back if he thinks different but if she does not call back he will think the same, which so far that is how it is looking. I asked her could it have gone to secondary progressive but she said no it really is exacerbation and is quite common. I really hope she is right and this clears soon as my pathology results are next Thursday and I need to be able to fight this. xxx
I can’t ever expect to know how you are feeling but the more I find with M.S. is that for me, I have to not think about anything at all sometimes to help all of the crappy things that happen. Saying that I have some excellent days and I am now generally quite happy after several years of torment and finding M.S. and all the stuff that goes with it.
I thought I would reply and say that I don’t ever wear a proper bra anymore. I haven’t for 2.5 years. Not because I want my boobs hanging round my knees at any point but just because I have a lot of spine pain so stretchy hammock things are the closest I get to a bra. Failing that I sow two padded shaped things into my favourite vests and just wear these underneath. If you don’t have to wear a bra at the moment for health reasons, just leave it off. Make things as easy as you can for yourself especially at the moment.
Also, the leg. Don’t worry about it, if it is going to be heavy at the moment then there is not a lot you can do about it. I have a heavy leg day today, it has woke me up hurting and is dragging like a bosted table leg, so for me that means that later today I will not be doing much. I might potter a bit in the garden but if my leg is playing up then I shall be enjoying my favourite books, resting my leg, rubbing my foot and letting it rest. I have supported pretty sandals with a stretchy strap at the back which aid putting them on and walking so I don’t even bother with proper shoes on days like this. If it is going to be heavy and tight and hurt then there’s nothing I can do about it today, just look after it. After all, it is trying to tell me something.
It is really hard to know what is stress, what is M.S. and what is what basically. Your priority is recovery at the moment and gaining information soon. Sometimes, the M.S. has to go on the back burner whilst we do battle with other things. I get a bit freaked out when I get ill from a virus or bug, I feel like world war 3 is going on and I do get concerned that it is the M.S. having a wobbly. It has taken me a long time to ride this particular wave and just chill and hope for the best then eventually, when I feel better, I go to the GP just to check that my recovery is ok and any remaining things such as dropped foot, shaking on the right side, numb face blah blah are in his view, part of that recovery and the immune system just sorting stuff out. It is hard trying to find out when and when not to micro-manage. You are doing brill and you are on here and you are like me, you ask loads of questions. That is good, but also be kind to yourself.
Rule for today, do something nice just for you even if it is watching an old favourite on netflix or something. Take time out,sit in the garden if you have a garden. Take a moment. When I can’t do anything I do my nails. I shake so it doesn’t look very good but at least it is shiny and I can’t break my nails. Take care.
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Thank you so so much. Much the same today but I am being as positive as can be.I just keep saying to myself this will pass as
hopefully.Just want leg and hand to be better. Everyday hopefully it will get stronger, thank you so much again. xxxx
Hi Marydan,
Just to let you know that I’m still thinking of you. And wishing you a quick recovery.
Anthony
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I just noticed that I posted my last message but unsure if I sent it. I had my results on Thursday and I am very blessed in that the cancer has been removed with clear margin and no lymph node involvement. I meet with the oncologist on Wednesday to discuss my radiotherapy plan.
I would like to also let you all know the ms nurse wanted me to get a urgent gp appt last monday after speaking with my neuro. Last week I had lost all power on my right side and bladder etc totally gone. My daughter and niece took me to the gp where they said it was definitely a relapse and I was on 5oomg steroid orally monday-friday. I am much better albeit still a long way to go.
I know I may be left with a bit of damage and will indeed ask my oncologist on wed about dmd’s but at this moment in time I am beginning radio and have tablets to take for the next ten years so I am worried about even more drugs in my system.
Feeling like I have been beaten up and ache all over but the gp said to expect this and it will settle. He also said the steroids will work within my system for next 3 months.
They also have said with me responding as I have to the steroids and this being my first ever relapse they are quite sure still rrms. They were not impressed with ms nurse but hey ho I am very grateful just to being a bit better ready to face next hurdle. THANKS TO ALL XXXX
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That’s the ticket darlin! Keep fighting and rest when you need to. We’re all rooting for you!
Pollxxx
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