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Secondary progressive MS

Hi Everyone One week since I was diagnosed, the consultant reckons its SPMS as I started having problems some 10 years ago. Started with losing perrifical vision in one of my eyes, this came back eventually, just one of many problems, but finally diagnosed after 14 months of tests. I am due to see an MS nurse in a couple of week, do any of you know of any treatment that might help me? I am taking Solifenacin,Amitriptyline,Co-Codamol and Gabapentic at present, but walking getting harder, sleeping and bladder problems, and loads more, so any ideas? Thanks Deborah

Hello,

There is no treatment on the market for SPMS. There is a colossal amount of research so keep your eyes open for trials. The MS Nurse or consultant may well be the best resource as far as that is converned.

The drugs you are on are more or less what I’m on, they are just symptom relief.

Try to take it one problem at a time but talk to MS Nurse for help and advice. See if there is an MS Therapy Centre near you http://www.msntc.org.uk/ they can be very helpful.

I’vre had SPMS since 2000 and I’m still going strong but my life has definitely changed.

Hope this helps,

Patrick

I am sorry to hear of your diagnosis Deborah. Make a list of the symptoms you are struggling with and take it with you to your appointment with the ms nurse. She will discuss with you the medication available for each symptom. I am rrms so cant help much but thought i would say hello. The nurse will also be able to refer you for further help if you need it such as phisiotherapist/urologist. Once you have seen the nurse hopefully you will get some help to give you relief from some of your problems. Can you be more specific about what you need help with please so the lovely helpful people on here can help you. Best wishes Teresa.x

Hi Deborah

When I was dx in 2008 I had been having relapses for around 20 years but so mild I didn’t see the doc until 2000. Be careful they are not trying to give you an S/P label, they should take lots of things into consideration other than how long you’ve had symptoms, like are you having relapses and do you recover from them.

Wendy x

Thank youTeresa and Wendy when I didn’t get a reply to my email yesterday felt very isolated, then thought I must have done something wrong on my email, but felt much better getting both your replies so thank you. Wendy I don’t have any relapse and recoveries, just contact problems and getting slowly worse. For example have to use a walking stick all the time, and now think that I need a wheelchair for those days that my husband and I what to go out as I can only walk a very short distance and time, even in my kitchen at home last about 15 mins standing up before I have to sit down,really annoying as I love to cook and finding it harder and harder.i can’t remember the last time I slept though the night or was out of pain. Any way will do as suggested write down all this and more to give to my MS nurse. Thanks again guy,s for your advice. Deborah

Hello Deborah,

There is no treatment for SPMS but there is a lot of research so look out for trials of new drugs. I’m on ASCEND trial using tysabri but it is random double blinded. I’ve got SPMS, similar symptom relief drugs as yours

See if there is an MS Therapy Centre near you, they are very good.

Talk to MS Nurse and consultant, they should help you with sorting out the problems you mention

Good luck

Patrick

Thanks Patrick will speak to my MS nurse. Deborah

Hi Deborah,

Sorry you’ve been diagnosed but glad you found this site. I’ve got SPMS (first diagnosed benign 15 years ago, now SP)

My suggestions have been given - write a list of your symptoms for the MS nurse.

Ask about supplements vitamin D, fish oil, etc.

I use a high stool when I’m cooking, I just found it in a charity shop.

Take it easy, don’t get to tired but still enjoy yourself.

Jen x