Hello to all,well have had my annual check up with neurologist and he was lovely as ever.My husband and I went.
As you probably remember from all my panicky messages/questions throughout the summer I had my first ever relapse since diagnosis nearly 9 years ago and it was so scary and debilitating. The ms nurse thought it was a psuedo lapse as I was waiting to go for a lumpectomy as I has been diagnosed with breast cancer, however things changed and gp/neuro said steroids required which helped immensely.
The neurologist decided yesterday that going on all info from me, hubbie and gp notes it was quite a severe relapse with spinal involvement. I have never had a spinal mri only brain in the past but neurologist wants both done now to give them an indication of how active ect the ms was/is.
The only thing is, I have never started dmd, both myself and neuro were content with this over the years but and things may stay that way as I am limited with what I can begin due to the fact have to take tamoxifen for 10 years to hopefully keep the cancer away. The only dmd I would be offered is copaxone.
I will await mri results and I have oncology appointment 30th November and my neurologist thinks it is wise to gather all information and we will discuss the next step then. The neurologist did say, I may never have another relapse but best to get al lchecked.
He was very surprised at how well was and completely back to me and the fact that happened so quickly after steroids surprised him.
I think what I and others feel is that although the relapse was indeed a true relapse the stress and shock of the breast cancer brought it on.
So sorry for such a long rabble and thank you all so much for reading. Hope all well as can be with you all, Mary xxx
You are (if you don’t mind me saying) managing both your relapse and your cancer remarkably well. Although I can’t see a neurologist proposing steroids for a ‘pseudo’ relapse, nor them working especially well. Pseudo seems to me to equate to a stress reaction which has its roots in your psyche. But a relapse is often brought on by stress, which is something you’ve clearly been experiencing with your breast cancer diagnosis. So if it were me, I’d be inclined to call it a relapse and have done with it.
With regard to spinal involvement, my understanding is that if there is spinal inflammation, that’s where problems with limbs, bowel and bladder come from. Remission is just as likely as those relapses which affect the brain only. And that would be why the steroids have done a decent job in shortening the duration of the symptoms.
I took Copaxone for a number of years and had no problem with it at all. The injection is subcutaneous, which means it’s just under the skin. You inject into an area where there’s a decent covering of fat, so I tended to go for the bum and thighs most often, plus the tummy slightly less often. There’s also the upper arm, but at that time, my arms were rather scrawny so I didn’t inject there too often. Some people have trouble with injection site reactions, but I never did. In fact I thought that using the auto inject device caused the injection to go in rather more violently than without, so I didn’t use one. Having said that, most people nowadays do use an autoject device without difficulty.
Copaxone is a once per day injection. It’s supposed to reduce relapses and severity of relapses by about 30%. Obviously this is not as effective as many of the other DMDs but clearly it’s the only one that will mix with your drug regimen. Once you have finished and are cured (hurrah) of the cancer, you should be able to swap quite easily to another, more effective DMD if that’s what you decide you need to do.
You might find of course that you don’t have any more relapses for years to come, so could decide to stick with Copaxone if you find it suits you. It certainly comes with a lower potential for side effects than other, newer, more efficative DMDs.
Thanks you so much for replying. Yes my husband and I feel that it was indeed a relapse but brought on by the cancer even although I did not think I was overly stressed sub consciously I must have been. I really appreciate all your advice throughout this dark period of my life. Thinking of you all. Mary xx