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Unsure - Help/advice appreciated

Hi, I am 47 & been seeing Neurologists for 2yrs in Sept, 2012 after I woke with numbness down left side sent to A&E suspected TIA but not & after ct scan & mri referred to Neuro as outpatient.

Neuro sent for evoked potential tests xrays & more bloods

Evoked tests showed left leg getting little signals & right almost none. Bloods showed P-anca levels abnormal & raised concern of Vasculitis but Rheumatology claims no.

Eyesight perfect (well no change after diabetic cataract removal age 21)

MRI’s showed 3 lesions on brain, have had type 1 diabetes since age 14 & hypothyroidism.

Diagnosed with SMA aged 21 in hands predominantly, have Vitiligo which developed about 15 yrs ago, all auto-immune except SMA.

2nd MRI shows lesions are the same & no new ones.

So received ltr from Consultant saying Diagnoses: (copy word for word)

  1. CNS Inflammatory disease with radiological & CSF markers of demyelination.

  2. Strongly & persistently positive myeloperoxidase antibodies with some subtle systemic symptoms

So he has talked of ms but stated their reluctance to diagnose as we all know BUT I just want diagnosis so I can move on & deal with the balance issues & vertigo similar issues - Severe headaches every other day minimum, cannot walk for more than 20mins before need a quick break.

So he has started me on Azathioprine immunosuppressant to see if it helps…weekly blood tests to keep eye on liver/kidney function which are currently ok.

Any comments/views welcomed as currently cannot tell travel insurance anything really.

thanks for reading & sorry for long post.

Hi Gilly, I’m afraid I don’t have any special insights to offer, but I’m replying because I saw nobody else had. I’m afraid your situation is even more challenging than a standard MS diagnosis - which is already difficult - because MS does NOT cause abnormal blood results. It can’t be detected in blood at all. So whatever’s going on can’t be a “straightforward” case of MS. Either it’s not MS at all, and one of the 100 or so differential diagnoses, or it IS MS, but you coincidentally have something else going on, that’s clouding the issue. I think you are dealing with more than just “reluctance to diagnose” (usually not genuine reluctance, but they have strict evidential criteria that have to be met). Here, it looks as if the problem is not shortage of evidence, but too much - some of which doesn’t fit an MS diagnosis. During investigations, I had a single abnormal anca result, which cast doubt on the expected diagnosis of MS. However, this test was performed again, without any repetition of the abnormal result. Apparently, it’s not something that can clear up spontaneously, so the initial lab result had been a false positive, and I went on to be diagnosed with MS. In your case, however, the report talks about strongly and persistently positive blood results (I think they’re talking about your bloods, anyway). I take this to mean they’ve tested twice OR MORE, but still got the same result, which would tend to rule out lab error, and also to make an MS diagnosis problematic, as it would not explain all of the known evidence. A long time ago, when I was not yet diagnosed, I purchased travel insurance through a company called All Clear, who are specialist insurers for people with pre-existing health conditions. On the application form (actually, it was all online) there was the opportunity to indicate you have demyelination, but it did not force you to specify from what cause. Indeed, there was no actual box for MS, even if I’d known it was that - it just lumps all demyelinating conditions in together. So if the demyelination part is certain, even though the underlying cause is not, you may be able to get away with just saying that. It does go on to ask whether you have had any acute episodes (aka relapses) in the past 12 months, and also whether your ability to care for yourself has deteriorated markedly - which will affect premiums. I was able to answer no to both questions, and was in fact charged the same premium as if I hadn’t been ill, so they obviously felt that if I’d been stable for a year, the chances of a dramatic escalation requiring emergency hospital admission and/or repatriation were quite slim. Tina x

Thanks Tina for your response

It is very much appreciated to hear from you & thanks for the ref to All Clear as I will have a look at their website.

Gill x

Hello, I sympathise with you as I had Crohns Disease, Fibromyalgia as well as MS. So trying to get an MS diagnosis takes time as they try to unpick the jumble of symptoms. Hang in there as you will get to the bottom of it, it might just take a bit longer xxx

Hello Everyone,

I’m a newbie. I have just been diagnosed as having MS and off to a meeting with Consultant to discuss this afternoon.

I’m looking forward to chatting with you, once I master the site.

Twinkle :slight_smile: