Hi it's great to see some friendly names about.:)

From 98 after admission to hospital with ON and mobility problems they though MS with me.Even after a few nasty attacks my MRI was still normal.My first neuro said 5% of people with MS can have normal MRI'sand LP.Hedischarged me with ME.

As I'd been so poorly my family had already asked GP for a 2nd opinion.Luckily this was 5 weeks after being discharged from first.I saw a well respected European MS Specialist here in the UK.

He examined me and found optic atrophy,nystagmus,brisk jaw jerk,spastic paresis,positive babinski.He wrote in notes "I think this is MS".He admitted me into hospital and for the second time I was given vigourous testing for everything.As it was a teaching hospital I was also examined by many Dr's including neuroPhysiologists.

My VEP's had been abnormal since 98 but optic atrophy showed on MRI.MY SEEP'S showed nerve damage to right arm and leg.MS Specialist came to see me on Friday morning and said he thought it was MS but it was rare.I asked what he meant,he said rare not to show lesions but not to worry as this was usually benign.

Istayed with him for 4 years saw him every 6 months but never once was examined.The only time I was examined was when he was away at a conference and a colleague did the clinic.My legs had been scissoring and back arching so he eamined legs and increased Baclofen to 80mgs.

I then went through nightmare with spasms,loss of mobility etc.He wanted further scans before considering mitox.I deterioated and had to have physios and OT out to home for 6 weeks.I now had crutches and a wheelchair and was referreed to Orthotics for a brace.

After waiting 12 months for scans with NHS mySpecialist intervened andgot angry.Ifinally got scans after15 monthsJune 2006.My scans were once again of brain and cervical spinal cord.I have never had a full spinal MRI or an enhanced MRI.

As my brain scan still only showed optic atrophy I was told it can't be MS.The reason being MRI would have to show changes and after8 years of symptoms all MS patients show cerebellar atrophy.

I was discharged told they know something is wrong they just can't identify it.I haven't seen a Dr since August 2005,apart from GP I lost faith.

I take my Baclofen plus others,fatigue I fight every day and would love 12 hours a day out of bed,mobility and balance are a joke.

The best ismy Dad had bilateral ON and mobility problems,I've been told it can't be genetic.

Very few MS Specialists will now say MS with a negative MRI or a brain MRI only showing optic atrophy.

Goodness Spuggs - you have really been through the wringer! What a horrible experience.

It's no wonder some of us are fed up with doctors and are angry. You deserve better.

I still think MRI's, while necessary, just don't complete the picture for some when they don't show lesions. It's understandable that neuro's don't want to dx without the telltale MRI reports saying lesions because of malpractice suits. But that doesn't help limbolanders.

I'm sorry you have had to go through such terrible pain and suffering. 80 mg of Baclofen should be enough to pin down a dx don't you think?

I remember your story from before, Spuggy. I always get upset when I read that they haven't ordered an MRI of the thoracic region. Is your spinal tap also normal?

You've had to deal with way too much without a diagnosis.

I still have periodic MRI's. It is one way my neuro can determine if the disease is becoming more active.

If I were on the abcr's I'd want them periodically to be sure I should stay on the drug and not switch to a different one.

Afterall, you can be getting lots of new lesions and no clinical signs of it.

I guess that's why I question the emphasis placed on the MRI.

The MRI is a wonderful diagnostic tool but are doctors relying too much on them and not looking at the whole picture the way doctors had to do before the MRI.

:eek: No Lady Express I do not want to go back to them dropping us in a hot bathtub:rolleyes:

I had a MRI about a year and a half ago - first time since I was dx'd.

But, what if it the MS IS 'becoming more active' (according to the MRI), Boss? Does this really prove/disprove anything?

I listened to a Neuro's speach from a Biogen conference in Las Vegas a while ago, and he presented monthly MRI's that showed that the results are entirely different from month-to-month. Sometimes there was lesion activity, but no attack going on . . . and vise-versa. :cool:

Some people have tons of lesions, and no problems, and others have very few, but are very disabled. Does having active lesions prove that the the disease is progressing, and does not having active lesions mean it's not?

I've only had one MRI in the last 15+ years, because personally I think the MRI is only reasonably effective as a diagnostic tool. Otherwise, the results don't really tell us much anyway, IMHO.

Cherie

Lady Express, I'd go back to the hot bath test if it meant I could finally get treatment!!

Way before I started going through the diagnostic process, I purchased a lovely, deep bath with head rest, arm rests - the ultimate bathing experience. I got into this lovely, deep, hot bath and prepared to relax and enjoy. The only trouble was - I couldn't get out of it, I was so weak.

I remember telling my husband "oh goodness, I must have made the bath too hot, I'm sure that happens to everyone", who of course looked at me as though I was mad. That was the last bath I had in my beautiful indulgent bath!

I definitely think that doctors are putting too much emphasis on MRI as well - it's my understanding that even the revised criteria specifically state that the diagnosis is a CLINICAL diagnosis, ie once everything has been ruled out, it is up to the neurologist to decide even in the absence of diagnostic evidence.

Thanks Cricket and Matt.No Matt ihaven't had a thoracic MRI in the 8 years.I get lots of pain and tingling there.I also have bad problems with temp control,humidity and heat worsen spasticity as does the cold.

cricket that's my argument they should have picked up worsening spasticity and looked at why.Ovbiously it's not coming from cerebellum so it must be from spine.

However my initial examination with MS Specialist showed nystagmus and brisk jaw jerk which goes with the brain stem.I was told they thought I had a lesion in a critical area.

I have wondered about Devics/Neuromyelitis Optica as first neuro said I had 2 attacks of ON and my vision in left eye is hopeless due to optic atrophy.Also my attacks were always my legs and bladder but I would be really ill in bed.Family would call GP out and he would offer respite care:(

I've had to sort out Daughters health problems this year,she's seeing a Neuro.My Mother has another neuro condition and also a wheelchair user and has been seriously ill.So now maybe I'll start looking for answers again.

Jacqui.

i could not agree with you more. i often wonder if the importance of mri's are over stressed because it's the best tool they have at this point in time?

(i reached this conclusion after a butt load of mri's this last year....10 to 11 in 12 months to be precise)

everyone who has had ms for awhile knows lesion load does not correspond with disability status amongst other things.

We are fast becoming a Big Pharma's and some Docs worst nightmare.:D :D :D ....Getting to smart for them and becoming proactive in our own health concerns and care.....Muahahahaha!!