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Patients Multiple sclerosis

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Posted on

I was diagnosed with RRMS years ago. I've had 3 different neurologists question my diagnosis because I don't fit the typical picture. In 2012 they discovered a tumour growing from between my vertebrae in my lower back. The tumour was the size of a melon who they removed it. Since then I have learned to walk again and changed jobs. 

Every time I experience symptoms like tingling fingers, pins and needles/dead arms, hands and fingers, headaches, cramp, balance issues, mobility issues etc my gp puts it down to my tumour and it's long lasting effects. I feel it's to do with my RRMS, how do I get people to listen to me?

Beginning of the discussion - 31/07/2014

Confused


Posted on

Hi Scronti

im no professional and just offer opinions. I'd say the protein in your CSF is the result of blood breaching your CNS at the vertebra where you had your tumour unless you was diagnosed way before your tumour was there And it may still be out of line but will not be picked up on a standard MRI when your lay down This may affect you more when your upright and load bearing. This MRI you would have to fund yourself But worth a look.  Look up on google. Fonar MRI ms. There is one of these in London. 

Hope this helps

Daz

Confused


Posted on

Thing is with ms your neuro only knows a bit more than you do they exhaust all they know on diagnosing you. After that it's just about symptoms and treatment. I can't see why your fingers and arms are affected by your lower back unless your CSF is affected but still hard to understand why it would effect upper body

Daz

Confused


Posted on

Thanks Darren. I'm due to see doc in a fortnight so I'll bring it up :)

Confused


Posted on

Well, I have now been referred to a neurophysio and have had my medication tweaked. Has anyone out there had any issues with Pregabalin, also known as Lyrica???? I'm now on 300mg per day Along with tramadol, lanzoprazol, naproxen and a new hormone pill.

heres hoping they can finally get on top of my pain management. 

Latest MRI results show no new tumours although I do now have a gap between my L5 and S1 vertebrae where the tumour was growing from but they will monitor this. My pelvis and left hip have deteriorated a little and I am looking for advice on how to prevent further deterioration.

any advice would be gratefully received xx 

Confused

• Community manager
Posted on
Good advisor

Hello Scronti.

I highly recommend that you start a new subject with your question regarding Pregabalin and give it a fitting title. At the moment you may not be getting so much feedback since your question is "hidden" in a conversation about something else.

I know that pregabalin is sometimes used to treat fibromyalgia, so maybe it could also be an idea for you to post your question in our forum "Your opinion on fibromyalgia treatments". We also have a group called "Living with chronic pain", which you might benefit from.

Good luck :)

All the best,

Confused


Posted on

Thanks Marina, I shall do that xx

Confused

• Community manager
Posted on
Good advisor

Hey guys don't forget about this conversation! 

Remember that sharing can help us all to cope and prevent!

All the best,

Gilda

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