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NOT KNOWING WEATHER ITS MS OR NOT

hi im looking for help about 6 yrs ago i started having trouble with my r leg dragging then went off but then 3 yrs ago i had muscle stiffness a lot of pain in both legs but mainly my right leg after going to see a neorologist i had mri results white spots on the brain and optic nerve damage i had a luber puncture but that was clear so the doctor wouldnt say if its ms or not saying only time will tell… i recently developed a squint in my r eye the one with the optic damage along with other problems im having chronic pain in my lower back and my left leg has started cramping and dragging… iv red its better for treatment to start early should i be worried that i dont have the diagnosis to get the right medication.

Hi Sue and welcome :slight_smile: It is NOT necessary to have a positive lumbar puncture to be diagnosed with MS. This is because 10% or so of people with MS have negative results. It might be that your neuro suspected something else was causing your symptoms and MS was only one option, but if this is the case, you should have been told. The other possibility is that your neuro isn’t a very good one or perhaps he’s very good at something, but knows less about MS. No matter which of these is correct, if any, I think you need a second opinion from an MS specialist neuro. It sounds suspiciously like you should have received a diagnosis and gone on DMDs (disease modifying drugs/treatment) a long time ago. They aren’t a cure by any means, but if it is MS and you’d been on a DMD, you might not have had this latest episode :frowning: If I were you, I would ask my GP to do an urgent referral to an MS specialist neuro. You can use the “Near me” section of this website to find the name of someone in your area. Alternatively, google your local hospitals and see which neuros specialise in what. Not all neuros are equal! Good luck. Karen x

Hi Sue,

You sound very similar to me. Dragging heavy right leg caused I think by spasticity. I have been to neuro had mri and LP. The LP was clear and I have white spot/lesion only on cervical cord. First neuro (an MS specialist) thought not MS but maybe caused by radiation I had in 1990. Radiation consultant thought impossible. Then I went to another MS specialist who thought it must be MS. I had another MRI and LP. LP was again clear and MRI was the same as before. Cant diagnose MS on those results so I am in limboland. Saw the second neuro again this week and am having another MRI soon. I asked if I could have other tests to see if I have sjorgrens or Lupus which can cause myelopathys. I found on web that women over the age of 45 presenting with a myleopathy and a clear LP should be tested for sjorgrens.

Some people have been diagnosed with MS with a clear LP, but I have read that there are a large number of neuros who think that they have been misdiagnosed. If you read the Barts Blog the Prof there says that people with MS and a clear LP do not have true MS.

I think with a clear LP they really need to rule everything else out.

Regards

Moyna xxx