IT'S BEEN A WHILE....
Sometimes when you have had a run of feeling good, you kind of forget you have the virus, then.................
I have just had a wonderful, warm, month long holiday in beautiful Thailand. I ate well, exercised daily walking laps of the beach, had lots of rest and lots of sunshine for the duration. I could have sworn I didn't have the virus. I know the photo is of Luxor where we were in February, but I've yet to download my Thailand photos. I always seem to be behind with the photos, but hey, at least I'm managing to post them at all.
I have been home only a week and it starts again, but now when I get, what I suspect is a viral flare up, it has a few extra symptoms that only joined the circus after my brief affair with tx.
It's all vague and non specific and I am not prepared to go to my gp while she looks at me like I've got two heads and wonders, 'what the hell does this woman expect me to do?'
Basically I get a kind of internal numbing feeling that appears to follow nerve, or perhaps meridien, pathways, always on the left side, its not a static feeling, it is sort of like a moving wave, that always hits the same places in patches, the back of my arm, my neck, throat, chest, hip and thigh. What is even more odd is that for instance with my thigh, only the top outer quadrant is affected, same with my arm, it doesn't affect the whole of my arm. The sensation is uncomfortable and irritating, though I wouldn't describe it as pain I do wish it would stop and it hampers my performance. I feel it internally too, my left lung the roof of my mouth
The next thing that happens is that my breathing goes slightly out of synch and I feel as though, if I was a car for example, I would say my engine is misfiring. It is very difficult to control the breath at these times, I get very agitated and it is almost impossible to implement slow, deep breathing and I am aware of the numbing sensation in my left lung. I become sort of hypersensitive, to light, noises and movement too, I can usually still continue to work, but it makes life difficult and it is also anxiety making and my nerves feel shot.
Whilst I have had these symptoms this week I visited my local tesco store, they had rearranged the store, cramming a whole load of new refridgerators in there and typically making the aisles even more congested and harder to negotiate. What I noticed in my sensitive state was that as I walked in and began to walk alongside the bank of fridges, that I felt weak and confused. As I stayed with the feeling I realised it was the fridges and the humming that was coming from them, when I moved to other parts of the store the sensations were subdued.
So how about that? I am sort of pleased that I have been able to give some sort of description of symptoms, I am able now from familiarity to pick out specifics of some of what happens. As the mind is usually foggy and sluggish too at these times, a description of symptoms usually ends up as vague as, I feel odd, strange.
Other news is that I saw my consultant again in November, she reported my scan was fine but wanted to test me for Cryoglobulinemia as she said my rheumatoid factor was raised. We discussed whether it was useful to have a biopsy considering that the treatment option was not something we wished to rush into right now due to the reaction last time around. We agreed that I would give it some thought and let her know at my next appointment which was scheduled for March 07 but was cancelled by the hospital and rearranged for May 07.
In the meantime I contacted Sam from the Hep C Trust and got some info on where I could find Fibroscan testing equipment in England. I contacted on hospital and was told they could test me as a NHS patient if my GP referred me. Great! My GP agreed to refer, but I chased that up this week, only to be told that the referral has to go via the PCT to be approved for funding and that the PCT only meet monthly so that decision would be made whenever they next meet, which could be next week or 4 weeks away.
If I get the go ahead for the Fibroscan test, I may then, dependent on the results, back that up with a Fibrosure blood test which I would have to pay for. If these tests conclude that there is only mild inflammation then I may delay having a biopsy for a while.
When I called in to see my GP about this referral, the first thing she said as I walked in the door is, 'your cholesterol is very high, we need to do a test asap'. Well I wasn't expecting that, I wondered when she would have told me if I hadn't gone to see her that day, the last time I had been to the surgery was 7 weeks ago regarding a shoulder injury. I also forgot to ask how high was my cholesterol. Anyway I have that blood test tomorrow and I will start my 14 hour fast this evening.
The other thing about blood testing is when I was tested for Cryoglobulinemia, I am sure they are supposed to keep the blood warm after they have extracted it. I saw no evidence of this when I had my bloods taken in November, so I hope they have done it right. I have heard that it is quite a common occurance that with this testing people often get a false negative result because bloods were not handled properly.
Ok I wrote all that then got a call from my surgery to say they were finding it very confusing to refer me for the Fibroscan, it is all too complicated even for them! I do hope they sort it out. Whilst they were on the phone I asked about the Cryoglobulinemia test result, and surprise, surprise, they say they will have to run the test again as the hosptial suspect it is a false negative as my rheumatoid factor is raised. Well, well, more fun and games to look forward to in May when I return to the hospital.
Finally Nick Green is organising the National Hepatitis C Network annual conference 14/15 April in Derby. I would dearly like to attend if only to meet up with other forum members, the problem is that it is my birthday that weekend and so there is a major clash of interests. I have still not come to a final decision, but a lot of thought is being given on how to make it happen, I would so like to meet other forum members. Here's the link with the info for anyone else who may be interested to attend.
http://nhcn.info/nhcn_index
OK its been a long time since I have blogged, I just needed to step back for a while and then it became a chore whenever I thought about it. However today I got a comment from my last entry from Joeboy and I thought it is time to update, so thanks Joeboy for getting my butt into gear.
I have just had a wonderful, warm, month long holiday in beautiful Thailand. I ate well, exercised daily walking laps of the beach, had lots of rest and lots of sunshine for the duration. I could have sworn I didn't have the virus. I know the photo is of Luxor where we were in February, but I've yet to download my Thailand photos. I always seem to be behind with the photos, but hey, at least I'm managing to post them at all.
I have been home only a week and it starts again, but now when I get, what I suspect is a viral flare up, it has a few extra symptoms that only joined the circus after my brief affair with tx.
It's all vague and non specific and I am not prepared to go to my gp while she looks at me like I've got two heads and wonders, 'what the hell does this woman expect me to do?'
Basically I get a kind of internal numbing feeling that appears to follow nerve, or perhaps meridien, pathways, always on the left side, its not a static feeling, it is sort of like a moving wave, that always hits the same places in patches, the back of my arm, my neck, throat, chest, hip and thigh. What is even more odd is that for instance with my thigh, only the top outer quadrant is affected, same with my arm, it doesn't affect the whole of my arm. The sensation is uncomfortable and irritating, though I wouldn't describe it as pain I do wish it would stop and it hampers my performance. I feel it internally too, my left lung the roof of my mouth
The next thing that happens is that my breathing goes slightly out of synch and I feel as though, if I was a car for example, I would say my engine is misfiring. It is very difficult to control the breath at these times, I get very agitated and it is almost impossible to implement slow, deep breathing and I am aware of the numbing sensation in my left lung. I become sort of hypersensitive, to light, noises and movement too, I can usually still continue to work, but it makes life difficult and it is also anxiety making and my nerves feel shot.
Whilst I have had these symptoms this week I visited my local tesco store, they had rearranged the store, cramming a whole load of new refridgerators in there and typically making the aisles even more congested and harder to negotiate. What I noticed in my sensitive state was that as I walked in and began to walk alongside the bank of fridges, that I felt weak and confused. As I stayed with the feeling I realised it was the fridges and the humming that was coming from them, when I moved to other parts of the store the sensations were subdued.
So how about that? I am sort of pleased that I have been able to give some sort of description of symptoms, I am able now from familiarity to pick out specifics of some of what happens. As the mind is usually foggy and sluggish too at these times, a description of symptoms usually ends up as vague as, I feel odd, strange.
Other news is that I saw my consultant again in November, she reported my scan was fine but wanted to test me for Cryoglobulinemia as she said my rheumatoid factor was raised. We discussed whether it was useful to have a biopsy considering that the treatment option was not something we wished to rush into right now due to the reaction last time around. We agreed that I would give it some thought and let her know at my next appointment which was scheduled for March 07 but was cancelled by the hospital and rearranged for May 07.
In the meantime I contacted Sam from the Hep C Trust and got some info on where I could find Fibroscan testing equipment in England. I contacted on hospital and was told they could test me as a NHS patient if my GP referred me. Great! My GP agreed to refer, but I chased that up this week, only to be told that the referral has to go via the PCT to be approved for funding and that the PCT only meet monthly so that decision would be made whenever they next meet, which could be next week or 4 weeks away.
If I get the go ahead for the Fibroscan test, I may then, dependent on the results, back that up with a Fibrosure blood test which I would have to pay for. If these tests conclude that there is only mild inflammation then I may delay having a biopsy for a while.
When I called in to see my GP about this referral, the first thing she said as I walked in the door is, 'your cholesterol is very high, we need to do a test asap'. Well I wasn't expecting that, I wondered when she would have told me if I hadn't gone to see her that day, the last time I had been to the surgery was 7 weeks ago regarding a shoulder injury. I also forgot to ask how high was my cholesterol. Anyway I have that blood test tomorrow and I will start my 14 hour fast this evening.
The other thing about blood testing is when I was tested for Cryoglobulinemia, I am sure they are supposed to keep the blood warm after they have extracted it. I saw no evidence of this when I had my bloods taken in November, so I hope they have done it right. I have heard that it is quite a common occurance that with this testing people often get a false negative result because bloods were not handled properly.
Ok I wrote all that then got a call from my surgery to say they were finding it very confusing to refer me for the Fibroscan, it is all too complicated even for them! I do hope they sort it out. Whilst they were on the phone I asked about the Cryoglobulinemia test result, and surprise, surprise, they say they will have to run the test again as the hosptial suspect it is a false negative as my rheumatoid factor is raised. Well, well, more fun and games to look forward to in May when I return to the hospital.
Finally Nick Green is organising the National Hepatitis C Network annual conference 14/15 April in Derby. I would dearly like to attend if only to meet up with other forum members, the problem is that it is my birthday that weekend and so there is a major clash of interests. I have still not come to a final decision, but a lot of thought is being given on how to make it happen, I would so like to meet other forum members. Here's the link with the info for anyone else who may be interested to attend.
http://nhcn.info/nhcn_index
OK its been a long time since I have blogged, I just needed to step back for a while and then it became a chore whenever I thought about it. However today I got a comment from my last entry from Joeboy and I thought it is time to update, so thanks Joeboy for getting my butt into gear.
posted by misspoppy | 2:59 PM
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