Getting diagnosed with MS
This will be significantly longer than the Chiari diagnosis.
So, it was around 2013 when it became apparent that something was wrong.
I was a big walker, I loved walking. For miles.
Then the distance I was able to walk started getting less and less. And when I rested, my legs would start pinging. I couldn't think of any other way to describe it. Like my muscles were zapping.
I have lost count of the number of times I went to the doctor, to be fobbed off with blood tests. I had so many blood tests, I felt like a pincushion.
In despair, I actually wrote down a list of things that were bothering me. The doctor focused on one or two of them and suggested more intensive blood tests *sigh*
I pushed for more, so the doctor eventually sent me back to a neurosurgeon I had seen previously.
More MRI scans, more denial that anything was wrong. (Incidentally, a few years later, while accessing my medical notes to fight the decision to deny me pip after having dla for years, that's another story, I found out that the radiologist had flagged up possible lesions of central demyelination, and nothing had been followed up)
Then he sent me to neurophysiology for nerve conduction tests and Electromyography. This involved putting needles into my muscles, getting me to flex my muscles while they put an electrical charge into the needles! I did not like that. At all. The leaflet accompanying the appointment letter said that it would be uncomfortable. Uncomfortable! That's like a man telling you childbirth is painless!
Anyway, a few weeks later I received a letter from the neurosurgeon telling me that the tests had shown a slight weakening of the muscles and nerves. So slight that I was by this point, using a rollator because I could not walk far at all and was falling a lot.
He wanted me to have another MRI, this one of my spine, and an appointment would follow.
So, another MRI. And, a result to make me think I wasn't going mad.
He told me that a disc in my spine had narrow exit holes where the nerves were, and he believed that was causing the weakness in my legs. So he needed to operate.
At this stage, I was nervous but so relieved that I could finally get my life back.
I had the operation in February 2016.
Had some physiotherapy, another MRI, and an appointment to see how I was in 3 months.
I very quickly realised that the operation had done nothing. Except give me a nice relaxing break in hospital.
So, follow up appointment, where neurosurgeon was stumped and as he was a surgeon, he believed he could do no more for me. And was going to pass me on to a neurologist. At least he didn't say psychiatrist but I expect he was thinking it.
Oh yes, and while we were at the appointment and he was showing me the MRI images of my head and spine, my husband actually asked what the white marks were on the images of my brain. He didn't know! 😮 (Demyelination)
The waiting list for the neurologist was months long. So I did something I could barely afford. I paid for the appointment privately!
The neurologist was brilliant. He told me about the lesions on my brain, but as there had been no other sign of them in previous years, he didn't think it was MS. But he would like me to have a lumbar puncture, and an evoked potential test, which measures the signal from the eye to the brain.
Back on to the NHS I go.
The lumbar puncture wasn't as bad as I was expecting. And both tests were done in the same hospital on the same day. So although I spent most of the day there, at least I didn't have to go back.
I had a routine appointment 2 weeks later which I decided to keep even though I didn't think the results would be in.
I saw one of the neurologist's registrar's and had to explain everything all over again.
He said to me, have you ever had a lumbar puncture? Yes, 2 weeks ago actually.
So he went to see the neurologist and access my computer records.
After 10 minutes had passed, he apologised for the wait, and said, yes you have MS. Utter shock and disbelief. I had never even thought of MS because I thought it was all relapsing and remitting, not constantly getting worse. But the registrar told me it was primary progressive MS which is just like all my symptoms.
He could see how upset I was and spent a little time with me. He also looked back through years of my notes and believed it had started 10 or more years ago, when I had visited the doctor for minor niggles and annoyances!
So that was that, October 2017. I was initially relieved that after so many years, I finally had answers.
Then I went through denial and persuaded myself that they had my medical notes mixed up with someone else and would shortly write to tell me this. Yes, I know, I was a deluded fool.
Then the anger started. With my body.
I started eating whatever the hell I wanted as a kind of FU to MS, like that was going to help wasn't it.
Depression reared its ugly head and all I could think about was, I can't do this anymore, I can't do that, I want to do this again, and on and on. Making myself more and more down every time I focused on what I could no longer do.
My mind was willing, my body let me down.
So, I got a mobility scooter so I could get out and about again and take the kids for walks like I used to.
I decided that this year would be the year I kicked myself up the backside, stopped feeling sorry for myself and stop focusing on what I can't do!
And that's where I am right now. I still get down sometimes, I still get fed up with my body, but I'm working on improving my fitness and therefore my mood.
Wish me luck 🙂