I’m feeling very blue today. I was diagnosed or partially diagnosed four weeks ago.
I’m usually quite an upbeat person but everything is just getting on top of me and I don’t seem to be able to resolve anything.
So that is why am here. I would like to get some advice. I have been out of work for over a year now. I am doing my own work at home. I have savings but I would like to know what benefits I would be entitled to and how do I go about getting them?
The other question I have is what is the best form of treatment for relapsing remitting MS? The neurologist I have seen at Kings College uses Beta Interferon? Is this a good course of treatment? I have done a serious amount of research but I would just like some additional advice. Also, I think I have had MS for five and a half years I am reasonably symptom free? I have minor problems on my left-hand side, feeling spaced out and fatigue (on occassions). Is this good?
I have a very healthy diet. I don’t eat meat. I eat lots of fish. I take vitamin D, B12 and Omega-3. Unfortunately, I get Tinitus if I take too much B12. I cycle but I don’t cycle as much as I did. I did the London to Brighton last year but didn’t feel up to it this year.
Is there anything else I should be doing?
Thanks, in advance, for any advice. I hope everyone is well and I really wish the rain would stop and let the sun come out to play.
Hi, I was dx last year Just before Christmas, I think I’m getting better at coping with it! It’s still hard but I tell myself getting upset and stress makes it worse, I think Doing lots of different exercise is great,I find Yoga is great for the balance and cycleing like you do, I haven’t eaten meat for 40 years but in the last 3 years I eaten oily fish nearly every day and keep to a strict diet,I have rrms,I’m taking Copaxone injections every day, so hopefully something will work!! The best thing for me was when my husband brought me Judy Graham book which really helped me through the first few months It has loads of inform on diet and exercises, I think you need to look at all the information on MS then decid what you think is best.
Feeling blue after being diagnosed is an absolutely normal thing. You will probably find that this will change to other emotions over the coming months too - it is all perfectly normal. It’s a path we all take. One day, you’ll come out the other side and accept it; learn to live with it. So take your time - you’ll get there in the end.
Benefits… if you aren’t working, then JSA or ESA. JSA is for people who are able to work, but can’t find a job. ESA is for people who are unable to work. The other main benefit is DLA (disability living allowance). This is not means-tested so you can get it even if you are working. It is for people with significant mobility issues and/or care needs. If you have a look on-line, you should be able to find a benefits checker to see what you might be able to claim.
The best way to find out about disease modifying drugs (DMDs) for MS is to go to the msdecisions website. High dose Rebif gets the best results according to recent research, but you may decide that something else will suit you better. The msdecisions site has a thing you can fill in to help you decide what will be best for you. There’s no “right” decision - just go with your gut feel.
As far as what you can do goes, 5,000iu of vitamin D3 a day is a sensible move. I take B12 purely as a “no idea if it helps, but…” and although omega 3 has recently been shown not to do anything for MS, it helps other things so I take it too. Exercise is a very good thing. It has been shown to help with fatigue, and having a stronger, more flexible body helps with all sorts of symptoms. If you aren’t up to cycling just now, why not try something new? I’m guessing you don’t smoke, but if you do, it’s better not to - smoking is bad for MS. Eating healthily is good too, so keep that up I guess. Rest when you need to; pace yourself and rest before you get tired when doing tasks.
Practical advice:
Make sure you get the contact details for a MS nurse if you haven’t got them already.
Check any policies you have for a critical health clause (MS is covered).
Tell the DVLA about your diagnosis. (It’s the only legal requirement that an MS diagnosis brings.)
I have been in limbo for a long time too. I was pretty much symptom free until the beginning of this year. Then I had a really horrible attack which lasted for about 6 weeks. I had very many symptoms which progressively got worse and worse. I then started taking B12 which pretty much stopped the symptoms and I felt great for three weeks. Unfortunately. i got a reaction to the B12 and had to stop taking it. I do take it occasionally now but it does give me Tinnitus. It does make me feel better though.
I had the results of my MRI 4 weeks ago. I have several lessions. It is not conclusive as it is a snapshot in time. I am having another one in November to see if there has been any change. I am quite annoyed really because I had Optic Neuritis 4 and a half years ago and I lost a stone in a weight over a week. I had several tests by an opthalmologist over two weeks. They couldn’t find anything and told me that it was probably down to a virus. They did mention MS once but didn’t refer me to a neuroligist and didn’t send me for an MRI.
Anyway, thanks for your response. I hope everything goes well for you too. x
