Immo
07-29-2008, 01:10 AM
Hi group,
Firstly, Sorry! As you don't know me in this group, this is an angry rant at the world for everything that's been going on. Let me introduce myself and my rant. My name is Kerry. I'm a 35 yrs of age female. I have Osteopenia, Trigeminal Neuralgia, Endometriosis, Polycistic Ovarian disease, Breast fibroadenomas, a non specific Inner ear disorder, Tinnitus, plus slight tremors in the left hand and occasional eye tics that spasm my whole left side of my torso and left arm and so on..
I'm on 1000mg per day of Tegretol (carbamazepine) for the Trigeminal Neuralgia and Actonel weekly for the Osteopenia. Plus 15mg Codeine for the Endometriosis as required. The Tegretol has increased my cholesterol levels, blood pressure, and is beginning to affect my kidneys. Doctor says there's no alternative ((bull****)).
I've had CT scans - clear. I've had MRI's (brain & spine) - all normal, except for what is called "evidence of Ischemia" (inadequate blood supply to brain tissue) what the??
I'm frustrated.
I just went to day surgery to look at the Endometriosis for a Laparoscopy (exploratory) + Hysteroscopy with D & C. Didn't see the Dr post surgery, just got a discharge summary in the mail box - WOW, it says "evidence of Endometriosis"... and when I'd left the hospital they'd simply made a 'standard' appointment for me that as is usual, is 6 weeks post op. So I don't see that Gynae till early September for the full results ...
I'm very frustrated..
It is SO hard to get treated these days. My Mother nearly died of Breast Cancer, my Aunty on my Mum's side did die of Cancer, which one finally got her - who could tell. It started as Ovarian Cancer, then she got Breast Cancer (aggressively), stomach cancer that mestastised to her Bones.
It had taken nearly a year from when I found my Breast lump (the fibroadenomas) to when they biopsied me, due to my age.. Thank God, it was only the fibroadenoma and not Cancer! That was a huge relief, but beside the point.
I've been getting injections of strong Iron and B12 from my GP. The levels won't increase properly, only microscopically. They stopped injections and are "monitoring" the levels for a few months..
My Neurologist felt that problems I've had with the Neuralgia, numbness, inner ear, tinnitus, gait, tics, spasms and balance issues warranted the MRI to check for demyelination relating to possible MS and damage to the Trigeminal Nerve. None there, MRI of brain and spine was normal (more or less). So my GP says - congratulations, you don't have MS, you just have Trigeminal Neuralgia. Great, Thanks I said.
To her that was conclusive proof, nothings wrong with me.
So now where to from here... Well, in 3 weeks I see the Neurologist again. I guess I wait for that appointment to learn where we go from here. He previously indicated that a clean MRI would then have us look at simply working on a treatment plan for the Neuralgia. Great, what about all my other Neurological symptoms - who looks after those? What are they? What's causing them?
In 6 weeks I'll see the Gynae again.. ((SIGH)) & ((SCREAM)).
Well, that's it for me from now. Sorry I really needed to write that down and get it off my chest. Life really sucks at the moment and I've lost 3 jobs because of my health while working. I'm on unemployment benefits because my previous GP wrote on a treating Doctors report that my Trigeminal Neuralgia is temporary. ((Psst: it's a progressive disorder - Dr, please google it)) So, well - she's no longer my GP.
Best Wishes to everyone here ~ Kerry.
Firstly, Sorry! As you don't know me in this group, this is an angry rant at the world for everything that's been going on. Let me introduce myself and my rant. My name is Kerry. I'm a 35 yrs of age female. I have Osteopenia, Trigeminal Neuralgia, Endometriosis, Polycistic Ovarian disease, Breast fibroadenomas, a non specific Inner ear disorder, Tinnitus, plus slight tremors in the left hand and occasional eye tics that spasm my whole left side of my torso and left arm and so on..
I'm on 1000mg per day of Tegretol (carbamazepine) for the Trigeminal Neuralgia and Actonel weekly for the Osteopenia. Plus 15mg Codeine for the Endometriosis as required. The Tegretol has increased my cholesterol levels, blood pressure, and is beginning to affect my kidneys. Doctor says there's no alternative ((bull****)).
I've had CT scans - clear. I've had MRI's (brain & spine) - all normal, except for what is called "evidence of Ischemia" (inadequate blood supply to brain tissue) what the??
I'm frustrated.
I just went to day surgery to look at the Endometriosis for a Laparoscopy (exploratory) + Hysteroscopy with D & C. Didn't see the Dr post surgery, just got a discharge summary in the mail box - WOW, it says "evidence of Endometriosis"... and when I'd left the hospital they'd simply made a 'standard' appointment for me that as is usual, is 6 weeks post op. So I don't see that Gynae till early September for the full results ...
I'm very frustrated..
It is SO hard to get treated these days. My Mother nearly died of Breast Cancer, my Aunty on my Mum's side did die of Cancer, which one finally got her - who could tell. It started as Ovarian Cancer, then she got Breast Cancer (aggressively), stomach cancer that mestastised to her Bones.
It had taken nearly a year from when I found my Breast lump (the fibroadenomas) to when they biopsied me, due to my age.. Thank God, it was only the fibroadenoma and not Cancer! That was a huge relief, but beside the point.
I've been getting injections of strong Iron and B12 from my GP. The levels won't increase properly, only microscopically. They stopped injections and are "monitoring" the levels for a few months..
My Neurologist felt that problems I've had with the Neuralgia, numbness, inner ear, tinnitus, gait, tics, spasms and balance issues warranted the MRI to check for demyelination relating to possible MS and damage to the Trigeminal Nerve. None there, MRI of brain and spine was normal (more or less). So my GP says - congratulations, you don't have MS, you just have Trigeminal Neuralgia. Great, Thanks I said.
To her that was conclusive proof, nothings wrong with me.
So now where to from here... Well, in 3 weeks I see the Neurologist again. I guess I wait for that appointment to learn where we go from here. He previously indicated that a clean MRI would then have us look at simply working on a treatment plan for the Neuralgia. Great, what about all my other Neurological symptoms - who looks after those? What are they? What's causing them?
In 6 weeks I'll see the Gynae again.. ((SIGH)) & ((SCREAM)).
Well, that's it for me from now. Sorry I really needed to write that down and get it off my chest. Life really sucks at the moment and I've lost 3 jobs because of my health while working. I'm on unemployment benefits because my previous GP wrote on a treating Doctors report that my Trigeminal Neuralgia is temporary. ((Psst: it's a progressive disorder - Dr, please google it)) So, well - she's no longer my GP.
Best Wishes to everyone here ~ Kerry.