Hi everyone I’ve just found out that I’ve now got secondary progressive ms and not rrms anymore. I’m 28 and had ms since i ws 14 but not properly diagnosed till 18. .Just feel like my future has been taken away from me, i was hoping my symptoms would get better, and was hoping to have another baby when i was better. Now ive been told i wont get better only worse. Anyone else able to cope with this?x
There’s no reason why you can’t still have another baby. Although SPMS is never a nice thing to hear, it does mean that life gets a bit more predictable - so my SPMS friends tell me anyway! It also doesn’t mean that the progression will be fast. Like everything in MS, rates of progression vary massively. Let’s hope yours is of the snail’s pace variety!
There is a brilliant website called multiple sclerosis research which lists a lot of new studies that are happening. It’s put together by a team of neurologists and MS researchers, so you know what is on there is good stuff. A study I read about the other day was for SPMSers and Tysabri. The results so far have been really encouraging. They are still recruiting for the study too - so if you are interested you could look it up.
Karen x
I also on top of this lost my dla appeal, they have awarded me no award. I cant believe i have to fight for this, i think i will have to do a whole new claim based on how much my symptoms have deterioted over the last year. My welfare rights officer was fuming, told me it was a horrendous panel as they were aggressive and were asking me innapropriate questions. So im barely able to leave the house as i cant afford taxis to and from anywhere. my pain and weakness and stiffness in my legs has me in tears everyday, my meds r not taking my pain away, my vision has been mor blurred. I have self harmed in the past and im growing more an more tempted day by day to do this again, i actually cant deal with this as was told my symptoms wont improve, im not even 30 yet an im actually thinking of ways i can end my own life, the only thing stopping me is my amazing daughter, she is trying to cheer me up and i feel she does not deserve this shit put on her. Thanx for reading, i just dont know where to go from here x
Please go and see your GP and tell him/her how you are feeling. You need help to deal with all of this and counselling and/or anti-depressants can make the world of difference. Let someone help you. You can’t do this alone at the moment.
It would probably also help to get your meds reviewed - there may be a better balance that would help with your symptoms more?
And perhaps your GP would nag your neuro to get you on a drugs trial for SPMS. Tysabri CAN improve symptoms; it’s the only one available that can. There may be new ones coming through too that are being trialled.
Re DLA - are you a member of the benefitsandwork website? If not, please join. It costs about £20 for a year, but it is worth every penny. Read everything they have about DLA before you do either a new appeal or a new claim. It’s all in the wording: if you know how the forms are assessed, you know what to put so that your symptoms and disabilities are assessed properly. You also need to have at least one really good supporting statement from a medical professional - either your neuro, MS nurse, GP, physio, OT, etc, detailing your worst symptoms and how they affect your life. There is no way that someone with SPMS and who has your symptoms should not get DLA.
Most of all, please don’t hurt yourself. If you get the right help, things really will get better.
I have to go out now, but I’ll be back later. If you want to talk more privately, please send me a pm and I’ll get back to you as soon as poss.
Kx
Thank u for all ur kind replies, I’m so happy i can at least write down my feelings and symptoms and be understood. I am feeling a bit more positive today, i think this may be due to the sun coming out and my window being open, also i know i have my doctor and welfare officer to support me in regards to if i make a new claim. My syptoms have worsened and right now my legs r buzzy and in painand im sitting with a cushion at my back to help with stifness and ms hug. Also think my prgabalin has kicked in. So meds and a bit of sunshine and i feel a bit better. I am eager for anti depressents rizzo to help me to get through for the time being, i will try anything if it may be of benefit. Not had any other thoughts of self harm, i have not gave in to this, i know that the consequences for a bit of emotional relief would be an awful thing. A reminder through scars of a bad time, i have learned, has always made me regret doing it. I think i may just be crying out for help but i know how selfish it is resorting to self harm. I have caused upset to family and friends through doin this in the past, and i really dont want to do this to them again. It is such a selfish thing to do and can get horribly addictive as a coping mechanism. xx
Glad you’re feeling a bit better. Hopefully when you get to the right dose of pregabalin, your pain will be even more manageable.
I’ve never self harmed, but I am close to people who have. As you say, it is a terribly damaging coping mechanism - for the person doing it and for those who love that person. Talking, even if it is just offloading on here, has got to be a better option. Plus getting help of course - have you made an appointment to see your GP?
Don’t wait; do it now!
Kx