have done some reading and am wishing to see if anyone has any advice for me please
2 years ago i had a flu vac.
i had immediate reaction to it ....adrenaline and steroids and ER
10 days later i had monster onset of what turned out to be vestibular neuritis....total loss of balance on one side.
hospital for 8 days and came home to eventually be diagnosed properley and start at what has been a very long and wearing rehab process to regain my capacity to stand straight. i am about as good as i will get right now balance wise and worry about loosing sensation in my feet in terms of balance.
i have have loss of sensation and huge pain
after i got out of hospital i noted that my feet were sore.
at about 12 months i was noting it daily and eventually went to a neurologist who said i had small fibre neruopathy 6 months ago.
i was sent to have blood tests and return in 6 months.
initial discussion was had re the drugs available.
also that i might try B6 to see if it worked..it dosnt
my blood tests are essentially non indicative for this PN.
i didnt have a fasting glucose but i had fasting blood sugars and whatever the test is that tells what your blood sugar has been for the past 3 months
all normal. i dont have any obvious immune disorders tho i do have indicators for inflammation.
which is not suprising
since then i have learned something of the disease.
and it is flaring rather badly
for other reasons i will not be able to use the anti depressants nad most of the epilipsy ones ( I have an electrical problem with my heart and that counter indicates a number of drugs of these classes)
neurotin is a possibility but the docs i am dealing with dont seem to be too good at checking side effects so i do it myself nad usually call the drug companies .....which usually works tho i wasnt mad about the info from the neurotin people here.
the cost will be a huge issue as would be any trial of Lyrica.
also i have to be very very aware of my balance issues.
i have not fallen yet but i dont wish to.
i have had a hip replacement and have extensive osteo.
i have had recent CT to check that the PN is not disc related.
i do have leg pain from that but it is not the same.
i have had about 6 weeks of trying Zostrix HP cream but it seems to have had no effect.
i will keep at it longer.
i am also limited in the drugs i can take for pain.
morphine/codine makes me soooooooooo sick.
tramol takes away my brain for a long time and i am barely functional.
i return to the neurologist in two weeks.
i am not surei want to go thro the pain of EMG (had one with carpel tunnel nad can still remember it 15 years later
it has been cold her lately and i seem to be worse.
certainly if i have somthing cold in my hand it sets off my symptoms
i am getting around in double socks and gloves.
but dosnt appear to be renauds
the neuro reckoned it was worse in the heat nad i believed that .....til it got cold !!
i started on some statins about 3 months ago which have done a great job on my enormous cholesterol
today i started with hypno to get some weight off to try and get off the statins.
i am not sure that i can blame them for the worse pain but there is only one way to find out......get off them and check it i guess
i also tend to rather like my diet pepsi and see that here nad elsewhere this has been suggested as a no no
sorry for the long post but i will be grateful for any thoughts from those who have been around longer than me.
what might i look to asking my neuro.??
she actually wanted me to have an abdominal doppler if the pain went up my legs and i am having that next week.
in case i have an aortic aneurysm.
many thanks for any help