Saw my neuro today for the third time and now I’m so confused and don’t know what to do regarding dmd’s. I had decided that I was going to go ahead but now after seeing him today I’m starting to think twice.
Basically I saw him for the first time back in October when he referred me for an MRI scan. He then saw me for the second time the day after my scan which is when he told me that there was inflammarion on my brain which was consistent with mild ms but I also had a bulging disc in my neck which as he said would “muddy the waters a bit” regarding my ms symptoms buy he did go ahead and refer me to the ms nurse and also said at the time he would prescribe dmd’s if I wanted them.
I saw him today to go over the scan and radiology report and I feel he was quite dismissive of my symptoms and said he felt they were more likely to be caused by the bulging disc than ms. As I said he did say he would prescribe (extavia) if I wanted it but felt I wouldn’t get much benefit from it.
I’m now very confused because I thought I’d just had a very long relapse which has resulted in my walking deteriorating, my right hand being weakened and whenever I bend over now I have an intense burning sensation in parts of my body and my legs just about give way underneath me. I also still have the pins and needles in both of my feet which was the first sign of this relapse although that does manifest itself more as my feet feeling freezing all the time. On top of that I feel my bladder has been affected and that my balance is off.
My gut feeling is that it’s the ms that is causing my symptoms but I now can’t decide wether to go ahead with the dmd’s or to take a more wait and see approach just in case some of these things are being caused by the bulging disc and not the ms.
As my neuro keeps telling me my ms is very mild so is it a good idea to put myself on a course of drugs which will involve me injecting myself every second day and has some not too nice side effects.
Any advice would be very much appreciated. I am just so confused and don’t know what to do for the best now!!!
How confusing and frustrating for you. If it were me, I would go in for a second opinion with another neuro, but I know that is a luxury we don’t often have. Is this your first ‘relapse’? Sorry, I can’t tell from your post. If you are really unsure, it might be worth playing the darn waiting game and after another clear relapse, start the meds. I was offered avonex after my first relapse and was fortunate so be able to get a second, ultimately conflicting opinion. But that was ok actually as it gave me two clear options and educated opinions. So in the end, I waited until relapse two to start my treatment… Maybe I was in denial, but I think I did the right thing in hindsight. Have you talked to your gp? Good luck. I know how stressful med decisions can be. After 8 years on avonex, I finally took the plunge and changed to copaxane, just this morning, so I know, kind of, how your mind is just running, running running and thinking ‘what if i do? But what if dont!’ And round and round. Hang in there and hope you get some useful replies to help you make a decision X
I would try and get a second opinion from another neuro. I have seen three who all suggetsed something different. One of mine thinks it is mild/benign MS. Have you had a lumber puncture? If that is negative your disk problems may be causing the MS symptoms. Is it possible to have the bulging disk repaired surgically? Alternatively see a physio or chiropracter. I wouldnt take the DMDs until you are certain that it is in fact MS. I have said before that neurolgy seems to be a guessing game. Your neuro has suggested ‘muddy water’ which implies that he is just not sure.
Jdog I think this is probably my fourth relapse in about ten years though this has been the worst ever and has lasted about 9 weeks. I know four in ten years is not a lot but if I can prevent going through what I just have in the past nine weeks from happening sooner then I am so tempted to try it. I haven’t spoken to my gp yet but not sure how much help they’ll be. They’ve not been much help in the lead up to my dx, I don’t think they have that good an understanding of ms. I am due to speak to them next week so I will bring it up just in case they can give me some insight on where to go from here.
Moyna The neuro has given me a definite diagnosis of ms but he keeps describing it as mild and is attributing everything I’ve experienced over the last nine weeks to the bulging discs in my neck and not my ms. My gut feeling is that it is the ms that has been causing my problems and has left me with the residual weakness in my hand and my legs. I.m pretty sure bulging discs do not cause severe fatigue which has you sleeping eighteen hours a day for days at a time. When we tried to point this out to the neuro he said it must have been caused by something else but with no suggestion as to what???
As for the option of a second opinion, I’m not sure if that is an option. I live in Aberdeen in Scotland and we only have one hospital and one neuro department where they all seem to work together.
Thanks again for your replies, I’m still very confused but am expecting a call from the ms nurse to discuss things so hopefully once I’ve spoken to her maybe it’ll be a bit clearer in my head and I can make a decision on what to do.