please help had enough.. M.E? OR M.S?

Hi all, I am a new on here and need some advice please.
In brief, 20 years ago I was DX with M.E. I am now 39 and for a long time haven’t really suffered with M.E. However in 2011 I became terribly ill with a whole list of symptoms. My first was cognitive impairment, disorientation, balance issues, heat and light intolerances. Following this was referred for c.t scan of brain marked as normal. I then started having non epileptic seizures, terrible right leg ataxia that took 8 weeks to correct it self, stumbling, brain fog, numbness badly in feet n arms, electric shocks in face, and rigid jaw, pins n needles, , headaches, spasms and pain in limbs, eye ache and heavy eyes, but eye test is normal. At which point I was sent to a neuro center for full test as they suspected mad cow disease. L.p, blood’s, nerve test, ecg, eeg, chest,x ray, MRI of brain n spine were performed. High signal intensity was shown on brain MRI but marked as normal. I was discharged. I was bed ridden and chronic for several months, but now I am up and about and a little improved, when ever I get a bit better, I relapse again. I have had thorough testing all so far normal. My last MRI was a year ago and I am due to have one in October. Has anyone experience this? I was seen by an M.E, Dr, he said I do not not have M.E and was missed diagnosed, I failed the Romberg test and was seen by his collegue (clinical Psychologist) both agreed I did not fit the criteria for M.E, they said it was Neurological and defo not psychogenic. The neuro said I don’t have M.S, and until a test becomes positive they’ll do nothing, so apart from my g.p requesting the MRI next month, we have no where to go, the neuros are not interested and suggested it was psychogenic to my horror! I was gob smacked. Last week I got blood results back, I have now been prescribed Vitimin D3 for 12 months due to low levels, and my white cell count is raised and the bloods need repeating. The cell count is likely to be because of throat infection 5 days before my bloods were taken. However, I do not understand why I am low in vit D, I go in the sun and eat lots of fish and never had this until now. Can anyone relate or advise, I am so sick of being consistently I’ll. I can’t drive or work any more either, I am being bounced back wards and forwards, been ill for 18mnths now and still have no answers …thanks for reading my post and to ever replies xx

It sounds like you need to wait til you’ve had that MRI as it sounds like the last one was a couple of years ago. I don’t know about the Romberg test but thought you might want this post bumped up the list a bit :wink:

Good luck and it might be worth posting in the new/before diagnosis section :slight_smile:

Sonia x

Hi, no wonder you are fed up with all what`s been going on.

I had to google Rombergs, as I hadnt heard of it. I think the majority of us would fail it too.

It`s awful the way we are often left in limbo and dont have any support or guidance from the medics.

I was in limbo for eons and you could say I still am.

PPMS was suspected and then I was given a 95% diagnosis of it, only for that to be changed to HSP (hereditary spastic paraparesis), then back to MS and now my dx is;

spastic paraparesis/cause unknown, as we know of no other family members with similar symptoms to me. This has gone on for 15 years and i`ve seen 15 neuros!

I have read many times on here, about how Vit D deficiency can account for many neuro type problems.

So maybe you will see an improvement with the tablets.

Hang in there hun.

luv Pollx


I agree with what Sonia and Poll are saying. Many of us have to wait years for a diagnosis. The MRI hopefully will give you answers. That’s what started the ball rolling with me, having an MRI that showed many lesions so I really do hope that you will get an answer.

I really feel for you and hope you get help soon.

Shazzie x

Hi - I’m so sorry to hear you’re having such a rough time. You say you had a dx of ME about 20 years ago and now the medics are saying your were misdiagnosed and haven’t got ME ‘cause your symptoms are neurological and not psychogenic. Well ME has been classified, since 1969, by the World Health Organisation as a neurological condition!!! There are lots of similarities between ME and MS and you might find it helpful to look on The Hummingbirds’ Foundation for ME web site - My husband has ME (and me with MS) - so we’re a ‘right pair’ and in fact there are lots of similarities between the 2 conditions. Hope you get some answers soon and if you want to ‘talk’ further, feel free to pm me.

Hazel x