Forum

little done for people who got there first symptoms in the 90s

Got first ms symptoms age 13 now 35 and walking starting to go among all the other symptoms have experienced over the years with this dam disease .

Anyone else believe they have ms and not been diagnosed ? And suffered at the hands of the NHS

Hi,

I got a confirmed diagnosis in 2010.

But like you, I do suspect I had it years or even decades earlier. Unlike you, I don’t blame the NHS, and I don’t believe I have suffered as a result of not learning the truth sooner.

If anyone is to blame, it’s me, for not realising sooner the symptoms I had were not “normal” things everyone gets, and not actively pushing for answers.

I did eventually go to the doctor, but as my symptoms were not (at that time) obviously neurological, I was referred to Rheumatology, who couldn’t find much wrong, and eventually discharged me with a diagnosis of “wear and tear”, and advised me to rest and take ibuprofen.

That was at least four or five years before I was diagnosed.

I was, by that time, beginning to suspect I had a chronic illness, but honestly expected it to be rheumatoid arthritis. When Rheumatology couldn’t find anything, I was reassured, and tried to forget all about it.

It never crossed my mind in the slightest I had MS, even though I had an increasing sense of being ill with something.

I don’t wish I’d known sooner, as I’ve been fine for most of that time, and think I would have needlessly worried, and it would have blighted my life - when nothing terrible happened at all.

I think I found out when I needed to - i.e. when symptoms became too dramatic to ignore - but I don’t regret not learning sooner, and I don’t blame my GP, even though she was upset when she found out the truth. I’d only ever really complained about painful joints and tendons - and one incident of a sore leg, which I’d been worried might be a blood clot (it’s in the family). I think it would have taken an amazing leap of intuition and a lot of luck for any GP to put that lot together and suspect a case of MS.

Tina

I was dx in 1999 after a very few months, but then I was the ‘right’ age (mid 30s) and had MS written all over me, so mine was straightforward.

Around that time, a real change was in the air, I think - DMDs were (just!) starting to come on-stream and so, for the first time ever, there was a bomb-proof reason for the doctors to tell patients what they thought might be the matter. Also a good reason for patients wanting to know. Because suddenly there was something that could be done to arrest the ravages of RRMS. Another thing that has changed since those benighted days is that childhood MS is accepted as being something that does happen now and again. And finally, MRI technology was becoming more widely available; this has doubtless revealed much that in earlier times would have been brushed off with reassuring words.

I can understand that you feel bruised and let down by not ever finding out what is the matter after all these years, and I do hope that you can get to the bottom of things at last.

Alison

Me too. In 1990 (age 25) I had severe l’hermittes. I did have an MRI but was told that it was fine and that my problems were due to radiation treatment I had for cancer. This resolved but I was left with less energy than before and was told it was effects of the cancer too. In 2006 had numbness and another MRI was told it was a trapped nerve. Then in 2008 more numbness and weakness for a few weeks. In the back of my mind I knew something was up. Then in 2010 foot drop started to develop slowly Saw neuro in 2011 had more MRIs and lumbar punctures and still no real answers - could still be the radiation.

Have you seen a neuro recently ?

Moyna xxx