Hello, I’m 44 years old and married with 3 youngish children. I have had kidney failure for a number of years and have just been diagnosed with SPMS how ‘unlucky’ is that? I Ihave been having ms type problems for quite a few years (probably 10) but just kept being told ‘you have kidney failure -of course you will be tired’!! Over this past couple of years things have been getting worse - falling over (my knees look like my son’s!), numbness, extreme tiredness, memory problems (extreme sometimes), vision, irritability and numerous others. I am relieved to finally have a diagnosis, even though it is not a good one. I really thought I was going mad, no doctors would believe me about things until they decided to do a ct scan, quickly followed my a MRI scan which showed quite a lot of demylenation (?). My neurologist said that as I am possibly still having some relapses that he will prescribe beta interferon to see if thar helps. Just have to see ms nurse now and decide which dmd I am going to try though reading about some of the side effects is rather alarming! I had always thought my symptoms where caused by my kidney failure which could be ‘cured’ by a transplant. That thought used to get me through the bad times. Now I know that this is here for good and it takes some time to get used to. Crap eh! Sorry for rambling, must be having another ‘bad’ day! Lilbill x
Hi Lilbill, and welcome to the site
What a bummer - straight to SPMS
At least you have a name for it all now and know for sure that you aren’t going mad - doctors just don’t seem to understand just how important that is!
Have you looked at the msdecisions website to help you make your mind up about DMDs (disease modifying drugs: beta interferon etc)? It’s a really good site and full of loads of info.
The potential side effects list for almost all meds is long, but most people don’t get them. Same goes for DMDs - not everyone gets them, and most people find that they wear off after a while especially if they increase dosage gradually. I chose Copaxone because of the “flu” side effects of the inteferons. It was great for nearly 4 years, but then I started relapsing again so I’m now on Rebif 44. I chose that because research is now showing that it is the most effective of the injectable DMDs. The first three months were not a lot of fun though - having mild flu three times a week but I am now fine with it (a couple of paracetamol two or three times a day is all I need to stave the fluey feeling off). I’m really glad I persevered with it - every time I do that injection I am fighting back while, without it, I am defenceless - not a nice feeling!
Choosing a DMD is tough. Try and remember that there is no “right” decision. Decide what are the things that you really don’t want (e.g. more injections, “flu”, keeping stuff in the fridge, etc) and then go with whatever looks best against those criteria. The msdecisions website will help with that - there is a page on there that you can use to do this.