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Hnpp possible ms diagnosis

Hi all I am new to this I decided to ask for advice on here because

I was diagnosed with hnpp ( hereditary neuropathy with liability

of pressure palsies) 3 years ago. Has symptoms of pins and needles

numbness, foot drop. My doctor didn’t know much about hnpp

so referred me a neurologist I met with her last month and she was

concerned all my symptoms weren’t related to hnpp and dropped

MS bomb I’m obviously worried received the report today from Neurologist

shes did blood tests for vitamin d, vitamin b12, folate, coeliacs

serology, thyroid, rheumatoid factor and ANA ( I have no idea what this is

I am to have an mri next Tuesday, then waiting on appointment

for nerve conduction studies, physiotherapists and orthosist.

My report states I have tightness of Achilles’ tendon in left foot my reflexes

are we’re briskish particularly in lower limbs and crossed adductors

but plantar responses were down going i am confused to what most of this means

I have fatigue, headaches, eye pain, spasms, burning feet

numbness, vertigo, and my short term memory is terrible

thank you everyone for your time sorry for long post x

hi crazylegs

i was diagnosed in 2008 and you’d think i’d have learned the rudiments of neuro speak by now, but sadly it remains a mystery.

i have been told i have brisk reflexes.

highly toned legs (i thought you got that from the gym!) along with many other misunderstood or not understood things.

must sound really thick but i had a career and a good education!

go for the MRI and take it from there.

ask for explanations of any terms you don’t understand (not like me!!).

try to stay calm and avoid stress at all costs.

sorry for such a muddled and befuddled reply.

carole x

Thank you for your reply I’m just so confused by it all

and heads in a muddle

Hello

First of all, don’t worry about the neurospeak. Most of us don’t understand a word of the results to a physical examination. All you need to keep your head for is the further tests followed by a diagnosis.

I do recognise a lot of the blood tests you’ve had, in general they’ve tested for vitamin deficiencies (which can present in similar ways to MS), and for quite a few autoimmune disorders, rheumatoid arthritis, coeliac disease, Lupus and thyroid disease. So the doctors have been pretty thorough. Sadly there isn’t a straightforward blood test that will indicate whether or not you have MS.

For an MS diagnosis, the neurologist relies a lot on your history, the physical examination and the MRI. Even then, sometimes they’re not 100% certain and might do a lumbar puncture too.

It’s a scary time, being tested for all and sundry, the doctors do seem to have been very good at ruling out other things with you, that’s not always the case.

Try not to worry about everything that’s going on.

If you have more questions or just want someone who knows what it’s like to empathise with you, come back on here. If we can help, we will.

Sue

Thank you for your reply. Guess it’s just a waiting game now

mri is on Tuesday and still waiting blood results which were taken on

the 9th of October

So I had my mri yesterday evening lasted 30 minutes

radiologist came out and spoke to me asked about my condition I

i have and said I didn’t see any big tumours which is good

I said did u see anything else and she replied I didn’t look

closely at images

the radiologist did the right thing in not commenting on what s/he saw.

that is the neuro’s job.

tumours are the worse case scenario, ms is not life threatening.

wait for the report.

we are all on your side ( not the royal we but the other passengers on this ship).

xxx

I 100% agree with Carole. The radiologist isn’t supposed to tell you anything about the scans. It’s not their job.

And ‘we’ are on your side.

Sue

Hi iv just been recently diagnoised with ms…im just wondering about my driving license…iv notified dva(ni)and they are sending me out a questionaire for my gp to fill out…has anyone else had their license taken off them…im panicking here?Thanks Ryan

Hello Ryan

Did you realise you’ve tagged onto the bottom on an unrelated topic?

It’s usually best to start a New Thread by hitting the button above the list of posts. You give your Thread a title and you will get more relevant replies.

Basically, it’s a legal requirement to tell DVLA that you are diagnosed with MS and you have to complete a medical form as a result. Assuming you are actually safe to drive (eye sight, stopping reaction, steering power, etc, etc) you’ll be granted a 3 year license and in 3 years time you’ll do it all again.

I’ve never had trouble with renewal of my license. Eventually I became unable to drive with pedals, so my license is restricted to automatic vehicles with hand controls for brake and accelerator, etc.

So it should all be OK. Don’t worry.

Sue

Thanks sue appreciate ur help. Ryan

Thank you everyone for you replies xx

Neurologist report is in my brain mri is clear & very

reassuring

Hi there I’m new on here amd scared woth all my new ongoing symptoms. My mri showed Demilanation amd have other ms symptoms I have to wait now for an appointment with a neorolagist which they said can take up to 6 months :-/. The only thing I have to keep thinking is its not life threatening. It’s a life condition that can be managed. It’s just getting to that point of getting treatment