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A mixed bag

Posted Jun 16 2011 12:00am

Hey People,

Today is a bit of a mixed bag, with general updates. I just don't feel like even attempting to write about anything interesting. Ok so the symptom that's been giving me a real pain in my ass (literally : ) ) of late is neuritis. Last year I started to have a lot of pain in my lower back/butt, and down my legs. You might remember me saying I had to use a donut ring. Well, this improved somewhat after a few months of treatment and I didn't really have to use the donut ring in bed much. Last month it returned after I generally took a big dive. You see, I had made some progress after a few months of treatment, but then I took a good few steps back and I actually developed some new issues like bad spasms. Anyway, to get back to my point, my issues with the lower back, ass, leg pain started a few weeks ago badly. Before it was only really when I was sitting/lying in bed. This time it hurts with sitting, lying, walking, driving.

So my doctor sent me for an MRI of the lumber spine, and also a daxascan. Both came back normal which initially irritated me as I thought it was just another list of issues that were unexplained, and I couldn't understand how I could have such pain. As it turns out it did help a lot as it rules out structural damage, but told us that it was neuritis:

"Neuritis is one of the serious nervous disorders. Neuritis refers to an inflammation of the nerves, involving a single nerve or a series of nerves. At times, several different groups of nerves in various parts of the body may be involved. Neuritis is known as polyneuritis. Neuritis is also known as polyneuropathy, for strictly speaking, Neuritis condition is not an inflammation, but a change in the state of the nerves resulting in weakness, loss of the reflexes and changes of sensation".

I've actually had nerve pains for a couple of years now, but it has got worse. My doc said it is polyneuropathy, which involves many nerves throughout the body. I've also been having weakness, numbness, and tingling/pins and needles. Again these are issues I've had for quite a while. It's just they are worsening.

I have been on Lyrica, and amitriptyline for the last two years for these types of issues. My doc is taking my off Lyrica (this has to be gradual), and starting me on Cymbalta. This medication is used for depression a lot, but it is also used for neuritis.

My spasms are persisting on the left side of my body, and they can be really quite painful at times. It just feels like something is really overexcited. When it gets really overbearing I take a muscle relaxer. I try not to take it too much as I'm afraid of the addictive side of things with these tablets. I also take over the counter pain meds, probably too much, for my neuritis. I'm hoping this can stop with the new medication.

I'm on treatment at the moment (month 8). Its not too bad. I don't seem to be herxing as bad as when I first started treatment. I still feel ill, but before I could hardly stand out of bed, whereas now I can do a little. I'm on 1400 mgs a day: 800mgs of Flagyl, and 600mg of Tetraysal.

I found out a couple of days ago that my latest smear test is abnormal. I've had precancerous cells twice already and I've had to have two Lletz procedures. The last one was only a year ago... Its not really a good sign. I am a little concerned. Before I just got a letter with the results and I made an appointment and was seen a few weeks later by a gyne. This time I had it two weeks ago and the doctor rang me to say I need to see the gyne and that she would contact them. They then rang me yesterday to see if I can come in next week... Its all a bit too rushed for my liking.

I'm actually going to Paris next week to see a new specialist about my Lyme, etc, so I can't go then. Then my gyne isn't there the following week, so my appointment is for the 4th July. I definitely think my illness is causing this recurrence. Anyway, I don't want to think about it anymore as worrying isn't going to help me in anyway. A I said I'm off to Paris next week to see a new specialist. My other doctor (Dr. Jadin) was in a bad car accident before Christmas in South Africa (where she is from) ,and she damaged her spine, so she can't travel to Europe to see her European patients. This Paris doc is a colleague of hers and he follows her protocol. I'm interested to meet him as he seems to be quite like the LLMD's in the US. He takes quite a holistic approach, using antibiotics, and essential oils that you drink... I shall let you all know how it went. I will find out if I can share his name. My Dad is bringing me over (and paying-I am truly blessed). The only thing that is concerning me is that he booked it all in one day. I have to fly out at 7am and my returning flight is at 10.45pm. I know––alarm bells!!! This is why I'm saying I won't be able for anything else next week like gyne appointment. My Dad said we can hopefully get a room in one of the airport hotels after my appointment for a few hours so I can rest. My appointment is at 14.00, so even leading up to that is going to be tough going, since I will have to be up for around 5am. Ah well, I stressed my little head about it all a few weeks ago, now I just think it has to be done, so no point. I am having total rest for the next few days. I even said I wouldn't do any blog posts, etc, but I guess the will won this fight : )

To finish on a positive note. I finally finished my Japan short story for my creative writing course!!! It's great to feel I have achieved something. It was 3,000 words and it had to be set in a place I had never been before. So, between months/weeks off due to being sick in between it actually took over a year to do as I had to do lots of research too. It just highlights how hard it is for me to get anything outside daily tasks done with this illness and chronic fatigue...

So that's it people!

I hope you're all well...

Bye for now,

Treya : )

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