I first spoke to my GP about 18 months ago, about some weird things that were happening. He said that he wasn’t certain what was going on, but it was something to do with my body mis-interpreting pain signals. He started monitoring me.
A few months later, he sent me to A&E when I saw him as I had pins and needles over most of my body and it had gone on for nearly 24 hours. A junior doctor misdiagnosed me ( said it was hyperventilation) and sent me home.
GP did an urgent referral to Neurology. After many phone calls to chase it up, I saw a neurologist who was 100% certain that he would diagnose a degenerative condition before I left that day. He didn’t, so then said he’d arrange scans and further tests.
This then becomes a farce for several months as referrals to Radiology got lost several times. By the time I got an appointment for the results, it would have been a 9 week wait. In the meantime I’d also started having L’Hermittes Sign & temperature discrimination between the left and right hand side of my body.
My GP looked up the results, showed me the report and discussed them with me. There were quite a few lesions spread throughout the head and C-Spine. He told me at this point that he wouldn’t do this for many patients, but having got to know me, he knew I’d be better off knowing and then I’d carry on. I know he shouldn’t have done this, but I’m grateful he did.
When I next turned up to see the consultant, he told me that there were several areas of inflammation showing on the scan and decided that I needed a lumbar puncture. He wouldn’t comment on what may have caused the inflammation.
Guess what? The referral for the Lumbar Puncture got lost. When it was finally done, I was called to the hospital within 2 weeks of it. We were now expecting to be told it was MS. The LP showed raised protein levels but my consultant said it was inconclusive. He said he’d review it in 3 months ( end of August 2013)
At the start of August, I received a letter giving me an appointment in September with a different neurologist. I rang the number and had an answerphone message telling me I was through to the MS clinic!! I’m so glad my GP had discussed it before as it would have been a hell of a shock.
I went for the original neurologist’s appointment at the end of August, and he just said he’d decided to refer me to another colleague. I actually handed him copies of 2 sets of notes from my old GP practice and from a consultant at the same hospital in 1994. While I now remember both occasions ( 1 was slight pins and needles in my right leg in Jan 1994). I was told at the time that the 2nd incident was a viral ear infection when I was pregnant, which left me with residual dizziness for several months. I wasn’t aware that 2 separate doctors had written MS as a possible query. I’m glad I didn’t know as I would have spent the last 18 years worrying every time I felt ill.
Anyway, I met the new consultant who was amazed that the previous consultant hadn’t discussed MS with us, or called the lesions lesions!
In December she concluded that it was a Clinically Isolated Syndrome incident. She felt that I’m at a high risk of relapse so recommended injecting some form of Beta-interferon. At that particular point, all I could think of was my daughter who was due in hospital for a major operation and as I had to stay with her, I didn’t want to cope with side-effects.
There was no literature to help us, the MS nurse wasn’t present (I’m still waiting to hear from her) and given that we’ve had so many months where no-one seemed concerned I couldn’t understand why it felt like we had to make a decision there and then. Now I understand, as the new consultant is on Sabbatical Leave.
My daughter is recovering well, I’ve read up on the injections. I’m noticing every little sign or symptom and feeling that I should have started the injections.
I’m sorry for the long story, but I don’t know what I can do next. Have I just been unlucky with the hospital or is this normal?