I was diagnosed with MS 14 years ago after having a MRI on the brain which showed scarring. My symptoms were tingling legs especially behind the thighs. Also legs feeling very hot. Also heavy eyes and tingling in my head and general tiredness. When I was told what I had it was a bit of a relief because I had been suffering for two years before diagnosis. They seemed to think I was depressed and offered my anti depressants that I took for a short while but they made me feel dreadful so I stopped taken them. Anyway recently the symptoms returned with a vengeance. I went to see neurosurgeon and am now waiting for MRI scans on both brain and spine. I have to have a blood test to check my ESR whatever that is. At present besides the usual tinglings etc at times I feel as though I have an elastic band around my head just above my ears especially tight feeling on left hand side of head. I had the same feeling when I first started all those years ago but with him want this blood test its made me a tad anxious. Just wondering if any other MS sufferers have experienced the same.
Hi,
ESR has nothing at all to do with MS - it’s a non-specific inflammatory marker - non-specific means it’s NOT associated with any particular disease or condition - it’s just a useful indicator of whether inflammation is going on somewhere in the body - but even a sore throat could cause a raised reading, because yes, it’s inflammation!
As I understand it, the type of inflammation found in MS, which is confined to the central nervous system, does NOT affect ESR, so I do not know what he’s looking for.
He may just be looking for signs of an undiagnosed infection, as infections can cause a flare in MS symptoms. A raised ESR would suggest the patient was not well with something apart from MS, but wouldn’t explain what - as I say, it might be something as minor as a sore throat.
I’m guessing he’s just wanting to check if there’s anything that might be aggravating your symptoms - anything that doesn’t come from the MS itself.
But it’s purely a guess - I’m not a doctor!
Tina
P.S. I’ve just noticed you said you went to a neurosurgeon? Did you mean a neurologist, or are you quite sure he’s a neurosurgeon?
The reason I’m asking is it would be very unusual and even peculiar for an MS case to be looked after by a neurosurgeon. They deal with things that could be fixable by surgery - not chronic conditions like MS, which can’t.
If you really have been sent to a neurosurgeon, then whoever sent you there (your GP, presumably) is not thinking in terms of MS.
Tina
It’s a neurologist I saw Tina. To be honest I don’t know why I am needing a second scan done because things have improved while I was waiting to see him. I certainly don’t fancy having a Lumbar Puncture done if it’s not necessary. I consider myself lucky to have only suffered one relapse in the 14 years since I was diagnosed.
Oh well, that has cleared up one mystery, anyway. I thought if you’d been sent to a neurosurgeon, they maybe suspected something else.
They probably still want to find out what happened, even if the symptoms have eased. MRI should still show the lesions - assuming there were some.
Have you been told you might need an LP? You don’t have to agree to it, and I find it difficult to see what purpose it would serve, in someone who’s been diagnosed 14 years. Before deciding, be sure to find out exactly how it would benefit you.
If it’s just to fulfil your consultant’s curiosity, I would suggest that’s not really good enough reason to go through an invasive procedure. Does something crucial hang on it, like which treatment he would recommend? Or is he having doubts about your diagnosis?
But LP is not technically needed either for diagnosis (I never had one), or, usually, to decide on treatment, so I’m not sure quite why it would be proposed at this late stage, or how the information would help you.
You’re right that one relapse in 14 years is pretty good. Although certainly not unheard of, I wonder if this unusually long remission is making him question the original diagnosis?
You don’t have to have the MRI either, if you really don’t want one, although there are no risks associated with this. A good question always to ask is: “Why?”. You need to be clear what the tests are for, and how the answers will influence your treatment (if they would at all). If it wouldn’t affect your diagnosis, or the recommended treatment, you have to wonder what would be the aim of it.
Tina
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