Ask a Neurologist and Get an Answer ASAP
Hello. Have you had a lumbar puncture as part of your neurologic work up? Does you neurologist have a "working diagnosis"?
The neurologist said that as all bloods were ok and the mris were clear, that i didnt need one
Im not due to see the neurologist again now as she said her work was done - whatever that means
Sounds frustrating. How could any of your docs job be "done" when you are still having so many symptoms?
Did they check a Lyme titer?
Did they do a rheumatologic work up?
I dont think they did, but I wasnt told what they were checking for! I asked my GP if i had been tested for Vit B deficiency - i was.
rheumatological work up? i have no idea - sorry i am not much help i know but here in the UK our doctors dont tend to tell us what they have tested us for - just for us to go have more blood tests
Some central nervous system conditions, including post-infectious ones, often do not show anything on MRI. Lumbar puncture (spinal tap) can be complementary to the MRI as it often shows things in the fluid that reveal processes the MRI can't "see". I would recommend you discuss this again with your neurologist. It is slightly invasive and has some risks but they are generally easy to avoid.
It can be a helpful part of working up many different conditions including MS, Lyme disease, syphilis, etc
i wont be seeing the neurologist again now.. am seeing an endocrinologist who specialises in ME in a few weeks time
Ah i dont have syphilis as that blood test was clear
As for rheum conditions, many of them can mimic neurologic ones as they can affect the very tiny blood vessels that supply nutrients to the nerves.
My doctors were all convinced I had MS at first, then after the MRIs were clear they just said, no you dont have it, so we dont know what it is
They are inflammatory (auto-immune) conditions that can cause a variety of non-specific symptoms and be very difficult to diagnose.
There are many other conditions that can mimic MS.
my GP said it could be a Guilliane Barre type syndrome - but i feel like my gp is now treating me like i am lying and there is not nothing wrong with me.. there is no possible way i would lie about this, and there is no possible way my right leg could twist round on its own! its very frustrating
i have gone from being a personal assistant to a successful author, to living on a disability allowance and hardly leaving the house. and NEVER leaving the house without someone to help me!
I forgot to tell you the medications i am on at present... amiltriptylene 50mg at night, propranalol 10mg once a day, tramadol 300mg throughout the day, carbamazapine 800mg (400 am and 400pm)
I have days where the back spasms are so bad I cannot move and my right arm goes into 'convulsions' - thats the only way i can describe it as the shakes are so severe
it is mainly my right side that is affected, but the weird sensations are also on the left side too
nobody want to be this way...clearly there is something wrong...but these types of conditions...and I have seen manh...tend to be on the margins of what medical science knows...they usually turn out to be auto-immune in nature. Do any of these meds help with your symptoms?
meant to write...and I have seen many...
well the tramadol used to help with the pain, but has never stopped it totally. the arm convulsions only happen if i dont take the propranalol or if im late taking it.
Ive told my GP and the neurologist that I have always believed i have some kind of virus in my CNS - is this possible?
Can i also just tell you about the swine flu i had in 2009.. i had never felt 100% well after it.. kept going to the drs and telling them that i just didnt feel great. they kind of ignored me and would do a blood test and tell me i was fine
that's certainly possible...EBV for instance can linger in one's nervous system and create a host of symptoms, sometimes on and off (probably related to how vigorous the immune system is being in going after it)...and lead to CFS or similar syndroimes
have you ever been on a short course of prednisone to see if you symptoms improved?
yes - in june when i started seeing a new dr, i had Optic Neuritis in both eyes. The ON improved in my left eye, but has never gone from my right eye. i felt a little better on it, but some of the symptoms i have today i didnt have then
i was on prednisone for 3 weeks
that's a good trial...you should consider asking your doc for another short course...this can be therapeutic and diagnostic in that if you improve you know it is most likely an auto-immune process...when and if prednisone fails, you can then "move up" to more effective therapeutic options...a rheumatologist (or immunologist) would be able to handle this type of work up and treatmen plan.
Ok, so when I go back to my GP tomo morning, I should ask for another short course of prednisone and perhaps ask for some more blood tests? maybe a referral to an rheumatologist and an immunologist?
1) Request tapering prednisone course (could wait until rheum appt if not too long out)
2) Request rheumatology referral.
3) Ask about Lyme titer and rheumatologic tests (could wait if rheum appt not too long out)
4) Ask about utility of LP at this point
I would want to see LP results.
one last question too.. could ME cause my right leg to twist.. I can hardly walk now and only with a walking stick. my leg is turned outwards from my hip to my foot at about 90 degree
ME is a form of encephalitis (inflammation in the brain) so it can cause almost any symptom...the twisting could be a type of spasm or dystonia from a central lesion, or it could be due to something local ( a "lower motor" problem) due to stress, fatigue, medications, poor condti
if its an inflammation of the brain would it have shown up on the MRI i had?
Usually not, because we are talking about a microscopic process. If an inflammatory lesion in the brain is there long enough, and gets large enough, it may show up as a tiny focus of high attenuation such as is looked for in MS
ok, so does that mean that if i had another MRI in the future it may show up then? the neurologist did say that if i am still getting symptoms i should maybe have another one in a years time
Yes, that is how MS (for one) is diagnosed...by changes in terms of # XXXXX lesions, location of lesions, and timing of lesions.
Ok well thank you for your help
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Thank you - you have been really helpful