Haven't written on here in a while mainly as nothing has changed. Still my money saving bug has the better of me so have put the cashback links I know on here:
http://www.internetcashback.co.uk/refer/44869
http://www.greasypalm.co.uk/r/?l=688124
Sunday, 8 November 2009
Monday, 10 August 2009
nothing really new
Well I've had the field vision test with the optalthalmologist (I think that's how you spell it) and that was fine so no real problems there. Now have an apointment for next year for a second one. Oh well It is now all about keeping an eye on it.
The scar from where I had my biopsy done is looking better thanks to the power of bio-oil.
Still just done a review on this on the site 'dooyoo.co.uk' so if you see it in both places it is mine.
The scar from where I had my biopsy done is looking better thanks to the power of bio-oil.
Still just done a review on this on the site 'dooyoo.co.uk' so if you see it in both places it is mine.
Saturday, 20 June 2009
genetasist visit
Finally had the appointment with the geneticist which really didn't tell me anything new so what was the point of it?
Apparently they don't do a genetic test for it but was happy to discuss what would happen if me and a future partner decided to have kids etc in terms of prenatal testing for NF and the options of termination if it came back positive. Well I'll book us both an appointment with the GP but I don't think either of us have quite the right anatomy for giving birth (both of us being male).
Still he is sure it is NF 1 rather than NF 2 so that was the good news etc and went over some of the problems associated with it. Most of which I know about as I've been reading up on it ever since I was first told about it. Still it's a case of just keeping an eye on it having my blood pressure checked anually etc.
He also ended my measuring my head as apparently sufferers from NF sometimes have a larger skull than normal - at last a reason why I have problems finding hats, caps etc that fit.
Apparently they don't do a genetic test for it but was happy to discuss what would happen if me and a future partner decided to have kids etc in terms of prenatal testing for NF and the options of termination if it came back positive. Well I'll book us both an appointment with the GP but I don't think either of us have quite the right anatomy for giving birth (both of us being male).
Still he is sure it is NF 1 rather than NF 2 so that was the good news etc and went over some of the problems associated with it. Most of which I know about as I've been reading up on it ever since I was first told about it. Still it's a case of just keeping an eye on it having my blood pressure checked anually etc.
He also ended my measuring my head as apparently sufferers from NF sometimes have a larger skull than normal - at last a reason why I have problems finding hats, caps etc that fit.
Tuesday, 21 April 2009
eye test thing done
Well had the appointment with the eye specialist and has revieled a few tiny 'tumour' things in the iris of both eyes. Nothing really to worry about but the quack decided he would book me in for a field test at some point so thats more bloody waiting.
Still no letter about when I have to go and see the genetasist but that will probably be at the least convieniant time but still that can't be helped.
oh well. More when I get to it.
Monday, 16 March 2009
had the results - it's positive.
Yep the results of the biopsy have confirmed that I have neurofibromatosis type 1. Oh well at least I have a name to put to it now even if it has taken 30 years to have it picked up.
Still the stiches are out and was told it was healing well - joy.
However, I now have to have several appointments with genetasists and some eye doctor which has a title I can't remember or even say let alone spell. lol
Oh well will keep this thing updated after a few more apointments and other things just to keep it all written down, it's all good fun - honest.
Still the stiches are out and was told it was healing well - joy.
However, I now have to have several appointments with genetasists and some eye doctor which has a title I can't remember or even say let alone spell. lol
Oh well will keep this thing updated after a few more apointments and other things just to keep it all written down, it's all good fun - honest.
Sunday, 15 March 2009
Stiches out tomorrow - and the results
Ok so it's results day tomorrow and the stiches come out - yay.
The site of the biopsy is healing ok and it hasn't become infected which is good. Still I'm assuming there is nothing really sinister in the biopsy as if there was I would probably have been called in sooner. Well perhaps I have been but the idiot housemates I have just haven't passed a message onto me. Missed several things due to that, well that's when they bother to answer the phone anyway. 9/10 times if I don't answer it no one else does still my most important calls come over my mobile so I now tend to ignore it myself.
Oh well just need to see what the say tomorrow but it could be the start of alot of appointments.
The site of the biopsy is healing ok and it hasn't become infected which is good. Still I'm assuming there is nothing really sinister in the biopsy as if there was I would probably have been called in sooner. Well perhaps I have been but the idiot housemates I have just haven't passed a message onto me. Missed several things due to that, well that's when they bother to answer the phone anyway. 9/10 times if I don't answer it no one else does still my most important calls come over my mobile so I now tend to ignore it myself.
Oh well just need to see what the say tomorrow but it could be the start of alot of appointments.
Wednesday, 4 March 2009
the itch is driving me mad
Ok had the dressing removed well for once it didn't pull all the hair out lol.
Still the itch of it all healing is driving me nuts. I know I shouldn't scratch it but it's aaaaggggghhhhhhhh! can I really stand it for another week and a half? Wish they would hurry it up and get the resuts sorted. Ok I'd still have to have to have the stiches out but it's this waiting around for the resuts I hate hate hare.
Oh well.
Still the itch of it all healing is driving me nuts. I know I shouldn't scratch it but it's aaaaggggghhhhhhhh! can I really stand it for another week and a half? Wish they would hurry it up and get the resuts sorted. Ok I'd still have to have to have the stiches out but it's this waiting around for the resuts I hate hate hare.
Oh well.
Friday, 27 February 2009
biopsy done.
Yep had the biopsy apparently a 'ellipse excisional biopsy on one of the neurofibromas. Well it was quick and I was back home within the hour. They decided to remove a larger one than the had origonaly planned to do so theu have more to work on.
Ah well the local worked, so no pain as yet and I have an excuse not to do any heavy lifting lol. Won't get the results of it for another two weeks so it's a case of waiting around for it. Well not waiting around, i'm still going into work - still need to get paid.
oh well after a bit of bleeding was sorted out with corterizing had two dissolving stiches put in inside the cut and three outside. well it will leave me with a scar but can't help that - always olbus oil.
Aparently i may get a bit of bleeding in the next two days so need to keep the dressing dry and clean etc, got a couple more just in case but hope not to have to change it two often as it's in a hard to reach place on my back.
Forgot to ask about the knee thing but I didn't see the quack but just the surgeon who did the biopsy. Just hope when the local wares off it doesnt hurt too much, but I have a stock of pain killers somewhere.
Ah well just need to see what the results are of the biopsy. At least if it comes back as possitive for NF 1 I'll know what it is.
Ah well the local worked, so no pain as yet and I have an excuse not to do any heavy lifting lol. Won't get the results of it for another two weeks so it's a case of waiting around for it. Well not waiting around, i'm still going into work - still need to get paid.
oh well after a bit of bleeding was sorted out with corterizing had two dissolving stiches put in inside the cut and three outside. well it will leave me with a scar but can't help that - always olbus oil.
Aparently i may get a bit of bleeding in the next two days so need to keep the dressing dry and clean etc, got a couple more just in case but hope not to have to change it two often as it's in a hard to reach place on my back.
Forgot to ask about the knee thing but I didn't see the quack but just the surgeon who did the biopsy. Just hope when the local wares off it doesnt hurt too much, but I have a stock of pain killers somewhere.
Ah well just need to see what the results are of the biopsy. At least if it comes back as possitive for NF 1 I'll know what it is.
Friday, 20 February 2009
that pain in my knees possibly answered
just been thinking over the past two days about my well I hate to say 'illness' as I'm not ill errrr condition? well I digress.
I have at times since finnishing school had awful pain in my knees for no real reason. It can get so bad it stops me sleeping. I had put it down, before now, to hurting myself when I ran the 110 hurdles at school after I fell badly. However, as this condition affects nerves etc could it be the cause of this as well?
Must remember to ask at the biosy, perhaps con them into giving my a scan on my knee anyway - just to be safe.
I have at times since finnishing school had awful pain in my knees for no real reason. It can get so bad it stops me sleeping. I had put it down, before now, to hurting myself when I ran the 110 hurdles at school after I fell badly. However, as this condition affects nerves etc could it be the cause of this as well?
Must remember to ask at the biosy, perhaps con them into giving my a scan on my knee anyway - just to be safe.
Thursday, 19 February 2009
diagnosis - only about 25 years late
Well I have been to my last 4 GPs for mole, or what I thought were moles, checks for years just to make sure they weren't developing into anything more serious. Well I have always been told they were nothing to worry about etc.
I went to my newest GP, well I say newest, I've been on his books for 6 years but only been twice, for an unrelated rib injury. Well after doing the usual rib checks he commented on the cafe-au-lait marks I have, after I told him that I had always had them he decided to refer me to the dermatology dept at the hospital just to get an expert opinion on them. My responce was , yeah why not? I've had them since as long as I can remember so they can't be anything.
Well at my appointment at the dermo dept the first doctor had a look and told me that she thought I had 'neurofibromatosis' but needed a second opinion. Well the consultant was brought in and confirmed the diagnosis. Then they brought in a junior doctor to have a look as they said 'it's an interesting case and we don't see it very often' That's all very well but I was beginning to have the best known back in Watford.
Anyway I was diagnosed as having Neurofibromatosis type 1 (also called von Recklinghausen disease) which can effect 1 in 3500 live births. For those who don't know about it it is a genetically inherited condition in which nerve tissue grows tumors (e.g. neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues. The condition is autosomal dominant, which means that it affects males and females equally and is dominant (only one copy of the affected gene is needed to get the disorder). Therefore, if only one parent has neurofibromatosis, his or her children have a 50% chance of developing the condition as well. The conditions severity in affected individuals, however, can vary.
However, to confirm the diagnosis I have to have a biopsy of one of the tumors (neurofibromas) a week tomorrow then I have to wait two weeks for the results. If confirmed it means a visit to the geneticist place.
There are plenty of effects of this eg:
There is a high incidence of learning disabilities in people with NF. It is believed that at least 50% of people with NF have learning disabilities of some type.
increased chances of development of petit mal epilepsy (a Partial absence seizure disorder)
The tumors that occur can grow anywhere a nerve is present. This means that they can grow in places that are very visible or tumors can also grow in places that can cause other medical issues that may require them to be removed for the patent's safety.
It also carries a 10-15% increased chance of developing cancer.
The thing that bothers me isn't the diagnosis it's self, I'm free of most of the major complications so far, but the fact that 4 doctors have missed it including the one who was my doctor whilst I was a child. As the external signs normally appear by age 5 it really should have been picked up earlier.
Oh well update after the biopsy.
I went to my newest GP, well I say newest, I've been on his books for 6 years but only been twice, for an unrelated rib injury. Well after doing the usual rib checks he commented on the cafe-au-lait marks I have, after I told him that I had always had them he decided to refer me to the dermatology dept at the hospital just to get an expert opinion on them. My responce was , yeah why not? I've had them since as long as I can remember so they can't be anything.
Well at my appointment at the dermo dept the first doctor had a look and told me that she thought I had 'neurofibromatosis' but needed a second opinion. Well the consultant was brought in and confirmed the diagnosis. Then they brought in a junior doctor to have a look as they said 'it's an interesting case and we don't see it very often' That's all very well but I was beginning to have the best known back in Watford.
Anyway I was diagnosed as having Neurofibromatosis type 1 (also called von Recklinghausen disease) which can effect 1 in 3500 live births. For those who don't know about it it is a genetically inherited condition in which nerve tissue grows tumors (e.g. neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues. The condition is autosomal dominant, which means that it affects males and females equally and is dominant (only one copy of the affected gene is needed to get the disorder). Therefore, if only one parent has neurofibromatosis, his or her children have a 50% chance of developing the condition as well. The conditions severity in affected individuals, however, can vary.
However, to confirm the diagnosis I have to have a biopsy of one of the tumors (neurofibromas) a week tomorrow then I have to wait two weeks for the results. If confirmed it means a visit to the geneticist place.
There are plenty of effects of this eg:
There is a high incidence of learning disabilities in people with NF. It is believed that at least 50% of people with NF have learning disabilities of some type.
increased chances of development of petit mal epilepsy (a Partial absence seizure disorder)
The tumors that occur can grow anywhere a nerve is present. This means that they can grow in places that are very visible or tumors can also grow in places that can cause other medical issues that may require them to be removed for the patent's safety.
It also carries a 10-15% increased chance of developing cancer.
The thing that bothers me isn't the diagnosis it's self, I'm free of most of the major complications so far, but the fact that 4 doctors have missed it including the one who was my doctor whilst I was a child. As the external signs normally appear by age 5 it really should have been picked up earlier.
Oh well update after the biopsy.
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