Well, I had my first appointment with the neurologist yesterday.....
I had a MRI done of my head 5 weeks ago, and I had picked up the results from my doctor before going to see the neurologist, the results said normal/unremarkable.
So the neurologist asked me a load of questions about what symptoms I had,
*Pins & needles in both feet & Hands not continuous but many times/often throughout every day and sometimes random pins & needles on legs/arms
*Loss of balance bump into things, sometimes fall
* Stagger if get up in the night first thing in the morning, have to hold onto wall door frames to get to bathroom.
*Forget things
* Tired/exhausted
* Cannot judge distance, ie people walking towards me I cannot judge if I can get through a gap so have to stop as likely to loose balance
*weakness in muscles
So first of all he got me to walk down corridor and back then he got me to take shoes of and did some test on my feet, and tested various reflexes, then he got me to do touching his finger and doing stuff with my left hand then the right hand.
Well it is obvious there is something wrong, as many of the tests on the right side of my body I couldn't do or found extremely difficult.
So conclusion, "yes there is something definitely wrong, but I don't know what it is, If your doctor cannot work out what is wrong with you, he sends you to me, and we often don't know what is wrong either, it isn't MS, it isn't Parkinsons, it is most likely something quite rare, we just find you all very interesting, and even if we do know what it is, there is probably nothing we can prescribe that will make little or any difference" "As time goes on and your condition progresses we may be able to see something that say, oh yes that is what it is"
He then gets a pathology a bag out
"We shall do some more blood tests, but I don't think this will come back with anything, want to rule out Wilsons Disease, pretty sure it is not that but we will test it because we can"
" I will look at the Brain Scan myself and if I see anything I will let you know or if anything comes back from the blood tests.... See you in 8 MONTHS"
So That was a complete waste of time! They will just watch me get worse and think it is interesting GREAT!
Written by
AngelaJG
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I did my last SI end of December, and was waiting until after I had seen the neurologist before doing the next one (so was going to wait until blood test results come back and then probably SI again).
Folate was 7.2 about 8 months ago, and I did take supplements for folate while I was SI but also stopped that in December too.
Blood test were most of the usual ones that I have had done begining December was the last lot, so, Ferritin, serum B12, Folate, MCV ect but also included something to test copper (also have to collect urine for 24hrs), HIV, Antinuclear Antibodies, and a couple that I couldn't read (but they weren't Intrinsic Factor), they took 5 Vials, 3 orange top, 1 purple, and 1 blue.
No he didn't the only test with eyes closed was sitting on a chair eyes closed put arms out in front of me.
I told him of my tube train incident where was jam packed on tube couldn't see my feet and I completley lost balance so I was expecting him to do at least the romberg test but no.
to be honest I don't think b12 conversation would have got me anywhere. I am sort of hoping that the serum b12 test comes back low but doubt that it will as has only been 2 months since stopped si.
maybe I am wrong but just feel the whole system is not geared to look after us and I will end up like so many of us just taking things into our own hands and looking after ourselves at least we know if it is working or not.
Good thinking AngelaJG but hopefully your results will be "low" enough for your doctor to treat your symptoms and not just read his computer screen.
False normal B12 results and the risk of neurological damage
(U.K. N.E.Q.A.S Haematics.org.uk )
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
Do you have a copy of your MRI pictures? Some of your symptoms sound like chiari malformation and is quite often missed. That's how I was and I was finally diagnosed through MRI, I had a wonderful neurologist, but know a lot of people it is missed xx
Can you ask for copies of the actual images from a MRI scan?
If so do I ask the hospital where it was done or my doctors (am guessing they just got the details as was in the printout that was given to me when I asked for the results)?
For hospital records you probably need to contact the records manager or patient services manager for the relevant hospital trust. May involve form filling and visit to hospital records office.
Most hospital trusts' websites will have online advice on how to access hospital records for that particular trust.
On hospital trust's website, put "access health records" in search box.
You may be able to access hospital's policy document on access to records. You could always ring up hospital's tel no and ask to be put through to hospital records office.
Trouble is tilomilo, so many of the symptoms seem to cross over for different conditions , and doctors and consultants don't seem to like you suggesting anything or asking anything specific as they seem to think you are trying to tell them how to do their job and they get very upset with you
Well that is another one to add to the list of questions when I go back
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