Hi All, After ten months of hell, my neuro has said that I do not have ms, heres the story (try to make it short)… Referred to neuro july 2012, mri november 2012 which showed to areas of white patches in brain. had lumbar puncture March 2013 and was told by gp I had matching oligoclonal bands, however after seeing neuro last week he just said that I dont have ms. He gave me a diagnosis of something which he says does not officially have a name yet , apparently there are thirteen names in which they may call it but the one he thought most suitable is Bodily distress function. Whilst I appreciate this is a ms support forum I was hoping that somebody maybe able to shine some light on this or if in fact anyone has ever heard of bodily distress function. Neuro said there is no magic tablet! He is now discharging me and putting it back into my doctors hands. Does anyone have any advice or ideas on what I could do next? I am struggling living like this and do not know what else I can do. Sorry for the long post. Lisa x
Hi Lisa
I’m a bit perplexed - my little knowledge on bodily distress syndrome is that it’s a term coined to group various functional/stress related disorders under one umbrella. Hence why your neuro says there is no treatment. It’s a diagnosis used (being aware I’m not an expert so I’m not 100%) when a person is exhibiting symptoms (similar to MS, GI issues etc), but with the absence of any conclusive defect on MRI, clinical examination & LP etc.
If I were you I’d be a bit concerned (thats not to say stress can’t cause all the symptoms you may be having and for some people it’s very debilitating). You seem to have suggested there were white patches on your MRI (I’d be wanting to find out where exactly these were - some white patches can be age related but not all) and your LP seems to suggest you had something but again I’d want more detail here - were the bands found in just the serum or blood or both (this is important as if it’s just in the serum CSF this liquid only bathes your spinal cord and brain so then this suggests a central nervous system issue).
You may have these results at hand, and if so it maybe worth putting up your results; I’m not an MRI expert but there are others that maybe able to help you on what exactly was noted on MRI in laymens terms and whether this is relevant. There’s also an MRI guide sticky that you can use yourself to help you understand your results. It may also be worth putting a brief summary of your symptoms/journey here - usually patients that complain of a lot of symptoms at once i.e pins and needles in R foot, weak L leg, sore back, funny eyes, or symptoms that move around quick quickly don’t fit in with MS, as it’s quiet unlikley for damage to occur in so many different areas or to move around very fast.
Hope that helps - I’m not saying dismiss what the neuro has said yet (without all the other bits of info I don’t know what exactly was found) - but try and put all your investigations and symptoms together and we maybe able to help give you a better idea of if there were abnormal findings that may fit with MS or not.
Good luck.
Reemz
PS: Here’s a link on bodily distress syndrome - it’s a paper so there are bits that may go over your head but I thought it might give you a bit of an overview on what it is.
I agree with Reemz: I think you need to get hold of your exact results and then work out what to do. At the moment, I’m leaning towards a second opinion. Karen x
Hi Lisa,
phew and phew again! I just googled bodily distress syndrome…aka bds and boy, it took me a few reads to try to understand it!
How can anyone get their heads round this, I dont know!
Like me, you have got a diagnosis that means very little.
I had investigations for 14 years, for PPMS, before I was finally told I dont have MS either!
My diagnosis is;
spastic paraparesis/cause unknown.
So we do have a common feeling of what the chuff is wrong with me?, eh?
luv Pollx
hi lisa
you could try LDN a lot of people swear by it.
not many gps will prescribe though so you may have to get a private prescription.
also make sure your B12 and vit D levels are good
carole x
Hi Lisa,
I am currently looking for a nuerologist that has not bought into the flavor of the month (MS). My son went to the hospital with chest pain, racing heart rate and pain in his left arm. Fearing a stroke the hospital ordered a CAT scan ad then an MRI which showed some white patches. He has never had any of the traditional MS symtoms. But they want him to start taking Copaxon. Please let me know what your neurlogist saw to rule out MS.
His D levels were very low.
Thank you
Terry