Hi all, you have probably seen this or answered this kind of post before, so please forgive my asking. I have just been diagnosed with MS, I am 56 year old male, so as you can imagine it came as a bit of a shock as it was thought I suffered a stroke in 2014 but the MS doctor believes that I had my first MS attack in 2014 and not a stroke.
So as you can imagine I have lots of thoughts going through my head, when told about the MS the doctor wanted to know if I had any questions, but as you can imagine I like everybody can’t think of any at the time, not until I had time to digest what the doctor had told me.
So here goes:
At present I have relapsing remitting MS but the doctor has said this will change in 5 - 7 years to progressive is that the norm.
What help is out there wether that’s support or financial.
Is there certain questions I should ask the MS nurse.
I probably have other questions but I feel that’s enough for now as I don’t want to take much or effort of any ones time, any help would be much appreciated.
I’m sorry to hear you’ve been given a diagnosis of MS. I can understand your thoughts as I have similar to face possibly , if my neuro decides it’s MS for me.
I can ony suggest jotting down any questions that pop into your head in a diary, along with any symptoms you experience as this gives both you and your support team an idea of how/if things are progressing.
I’m not very experienced so am sure others will offer much better advice, but just wanted to empathise with you as a fellow 50 something .
How can the consultant be sure it will become progressive, did he say??
Your MS nurse will be a fount of all MS wisdom. They are better suited to talking to patients than neurologists and have a huge range of resources available to them. Yours will be be able to refer you to NHS services as and when you need them.
If you need financial support I suggest you get an appointment with your Citizens Advice Bureau.
Please come back here if you have any specific questions or just want to let off steam.
i presume the consultant based his outcome on experience and probably all the tests they did, although I didn’t ask the question, maybe that’s one to write down.
my contribution would be to ask your MS nurse about a referral for physiotherapy - working to improve and maintain co-ordination, strength, balance and flexibility helps so much with functionality and safety especially as we age.
Tecfidera is an excellent disease modifying drug (DMD). And there has been some evidence that it works best when it’s the very first DMD a person tries. (I’d point you to the relevant research, but for some reason it’s no longer available.)
I think the doctor who told you your MS would turn into a progressive variant is talking nonsense. There is no evidence whatsoever that every person with relapsing remitting MS will ever develop a progressive form. And certainly no data exists that says when a person will change from RR to secondary progressive MS.
As Anthony said, your MS nurse will be the greatest source of information about your disease, your DMD, symptoms and referrals to other specialists, such as physiotherapy as Harebell suggested. Exercise will probably be the most important thing you can do to help yourself in the future. This is the greatest benefit a physio can give you, an exercise routine to especially strengthen your core.
Best of luck. Come back here if you have any questions which we can help with.
Thx for the reply Sue, I did ponder on what the consultant said and came to the conclusion, why worry about something that may or may not happen. The only side effect I am having is the flushing but I can live with that, it’s actually helps as it warms up my head, so on the cold winter mornings it may be a benefit, only down side is I am on a half doze of 240 a day but that will increase to 480 a day in a few weeks so will wait until then to see if anything side effects will occur, hopefully not.
Your right the MS nurses are a great help, will speak with them next week after getting a letter from consultant, which those top docs would explain themselves better, but hey ho why worry.