Forum

New diagnosis

Having read lots of the posts about new diagnosis I feel very lucky. I was diagnosed with PPMS just over 4 weeks ago following an incredible chain of events. 3 years ago I had an ACL reconstruction following a skiing accident. The operation was a complete success but the rehab of my knee just didn’t seem to work despite me doing all the exercises I was given. I had been discharged by my consultant but he agreed to see me again with the physio. He then sent me to a gait clinic but no real success there although there was a suggestion that my problems might be neurological. A few months more and the orthopaedic consultant referred my for a complete spine MRI. This showed a stenosis near the base of the spine so he referred me to a colleague. The colleague took one look at the scan and and said he didn’t like the look of it and was “going to spend some money” and get me two more scans (brain and thoracic spine) THAT SAME DAY!!! These came back showing lesions, and a visit to a neurologist produced a diagnosis of PPMS.

I’m sure it would have been many years down the line before I got a diagnosis as my symptoms are a leg that doesn’t do what I want it to and has some stiffness, some problems with my throat, peripheral neuropathy in both feet and some fatigue. Now I know what’s wrong I feel a bit liberated. I’ve found an excellent neuro physio who’s making a huge difference to my mobility.

My husband took the diagnosis a bit harder than I did but he’s been so supportive (despite us having some sexual problems) and seems to be accepting of it now. No idea what will happen next but I’m feeling positive and have just taken up the saxophone. By the way I’m a 66 year old woman.

Dear Moira, I didn’t want you to have your post unresponded to. You sound brilliantly positive and sound liberated to have a diagnosis finally confirming all of your symptoms and yes a quick diagnosis is preferable. Following my own diagnosis my husband is changeable, just like I am. He is sometimes angry and sometimes sad. Since I am a bit of a feminist though and have always been strong, he says that he loves the opportunity to take care of me at my weakest moments. This new romantic side of him is new to me and lovely! Warmest thoughts Ali

1 Like

Yes, I can imagine that you are glad to have been spared frustrating years of knowing something was the matter without being able to pin down what - I felt the same about my own quick dx (RRMS in my case). It is always good to know what you’re dealing with, I feel. At least it gives you a chance to look the beast straight in the eye.

I am sorry about your dx, though. Always a shocker, especially when there hasn’t been much sign of the way the wind is blowing. It is good to hear that your various medical advisors and therapists seem to be giving you good support.

As for the home front, well, it’s tough news for everyone, and people deal with things in their own way and in their own time. Just trying to be patient with each other and accepting those differences has been helpful to many of us.

Welcome to the club, and enjoy your music-making.

Alison

Sorry about your diagnosis but glad you seem positive about it. Is it Alto sax you are playing? I bought a cheap one on a whim when i saw one in a cash converters when i went for eye test after dropping my wife at hospital for a scan!The reality is i don’t have a musical bone in my body but tried hard every day for a few months and managed to play a just about recognisable happy birthday for our daughter on it before i got busy fighting my wifes employers as they tried to dismiss her and i haven’t touched it since. couple of links you might find good? https://cafesaxophone.com/ and tamingthesaxophone.com Ollie

Hi, welcome to the club no wants to be in, hello & welcome. P.s their are some very very kind helpful people on here.

Many thanks everyone for your support

1 Like