I felt truly awful the day after writing my previous post. My legs felt like lead and although I needed to get some things from town, I didn’t feel confident driving the car. Since I live on my own, I began to feel a bit worried in case I fell over and no-one except my cat was aware of it so I carried my phone everywhere just in case. That evening I woke up feeling nauseous and slept with a bucket beside my bed, something I haven’t done since my days of youthful over-indulgence.
One of the symptoms I have from MS is an altered perception of how food tastes and some foods simply give me a bad taste in my mouth. Since being on Tecfidera this had worsened and when I’d been contacted by MS nurses in Australia, one of them advised that this might be due to reflux and suggested that something like Omeprazole or Losec could actually fix this for me. I welcomed this advice with open arms and took the maximum recommended dose.
After two nights with my trusty bucket, I put two and two together and realised that this might not be the Tecfidera at all. It had started at the same time as I started taking the Losec. A quick Google search confirmed this so I stopped taking it and the nausea immediately disappeared.
What hadn’t gone away though was the worsening MS symptoms that began when I’d started on the Tecfidera and increased with every increase in dosage. The leaden legs, the feeling of being off-balance and dizzy along with the problems seeing out of my left eye had affected my ability to function properly and since I work for myself and live on my own, this simply wasn’t practical. Of course, I am aware that I have MS and this could well be my future reality but to have it happen in the space of a few weeks when I was feeling quite confident and capable before taking the drug was a bit hard to accept.
One day I felt so bad that my daughter took time off work and came to my place to help me with things like getting dinner etc. It was at that point that I tried to phone an MS nurse to find out whether it was possible to abruptly stop taking Tecfidera or did I have to wean myself off it. I couldn’t get hold of anyone but a Google search confirmed that this was OK so I stopped taking the drug immediately.
I expected to feel better almost instantly and was disappointed to find that although I felt slightly better I wasn’t at the point that I was before I’d started taking it which was where I really wanted to be. I’d left messages for the MS nurses and was phoned back and told to make an appointment to see my GP which I did. He ran a few tests which all came back normal and we both agreed that it was something that might perhaps take a few weeks to settle down.
In some ways it did but I still wasn’t feeling what I now would call “normal” and I got hold of the MS nurse who made an appointment for me to go to the acute neurology clinic. My usual neurologist wasn’t there that day and I suspect I was seeing a student. However he was as helpful as he could have been I guess and didn’t think this was a full-blown relapse but an exacerbation that may have been brought about by stress. I said I was worried about my eyes and would make an appointment to see an optometrist and I left with the impression that they would make an appointment for me to see my usual neurologist.
This is where it’s such a vicious circle because this whole episode created its own stress but after that I really did make an effort to create some fun things to do to take my mind off my own problems. One of the things I was concerned about though was blurring and double vision in my left eye. I had made an appointment to see an optometrist but even that had ended up in a peculiar and stressful disaster when, due to roadworks, I was ten minutes late for my appointment and the optometrist had ended up shaking her fist and shouting down the street at me. Thankful I’d been spared handing over my hard-earned cash to this nutcase, I booked another appointment with a very reputable optometrist elsewhere.
My appointment was just last week and I was completely surprised by the results. Evidently both my eyes are extremely healthy. He went on to say that although the equipment they have isn’t specialised in diagnosing something like optic neuritis, in most cases that are bad enough, they are able to at least detect it and he could see no sign the optic neuritis in my eyes. Although I was expecting to have to get new glasses, there was absolutely no change to my current prescription.
Confused, I went home and called the MS Nurse only to get a recorded message saying: “This service is not available now, please contact your GP.” Was this just for me or had the whole service been canned, or might it perhaps have something to do with the upcoming nurses strike?”
No disrespect to my GP but I doubted he could really help me here so I was again left consulting with Doctor Google. Here are the stand-out points I learned that are relevant to my particular case:
The sudden onset of double vision, eye pain or blurring can be terrifying, and the knowledge that vision may be compromised makes people with MS anxious about the future. Fortunately, the prognosis is good for recovery from many vision problems associated with MS. Blindness can occur but is very rare.
Optic neuritis is a type of MS relapse that affects one or both optic nerves. The symptoms of eye pain and blurred vision may worsen over the first few days to two weeks, and then gradually improve. Some people recover within a month, others need up to a year. Most people regain normal or close-to-normal sight. However, the quality of their vision, including colour or depth perception and contrast sensitivity, may be reduced after an episode of optic neuritis.
If the initial symptoms of optic neuritis are mild, a doctor may decide to allow the disorder to resolve on its own. While the prospect for recovery from optic neuritis is generally good, there are times when vision problems persist. Poor vision caused by optic neuritis cannot be helped with eyeglasses because the problems are caused by poor nerve conduction.
Double vision may lead to impaired depth perception, imbalance, and difficulty reading, walking and driving. If double vision occurs as part of an MS relapse, it is likely to resolve spontaneously and completely.
Source: nationalmssociety.org
As a general rule, I’m not big on complaining about our health system but why the hell did I have to go to Google to learn this? Surely at least one of the professionals I’ve been consulting with could have perhaps mentioned it in passing?
I’ve heard nothing from anyone for nearly two months now and I’m thinking maybe that’s for the best. I’m starting to think that just coping with this in my own way and occasionally consulting with Doctor Google may be a much healthier option that becoming reliant on a health system that is very difficult to access unless it’s an emergency situation.
Claire Jewitt 