thankyou so much pingu
Just to add to daisyn’s comments - I only have a full examination at my annual appointment if I have had a relapse. Otherwise it is a very quick appointment. A general how have you been generally, any questions and out of the door again. I always make sure that if I have anything bothering me I have it written down so I don’t forget. I see the nurses 6 monthly and they have a bit more time and are very knowledgeable anyway. I can also ring them at any time if I am having problems so on the whole I don’t feel as if I am losing out by only getting 10 minutes with the neuro. If my MS is behaving itself, I don’t need long with him.
I also think my legs have recovered so well from my relapses this year because I have been doing yoga stretches for 10 mins each morning and night and I have worked hard to build up the strength and reconnect the nervous pathways.
Tracey
Hi There,
I know exactly how you feel, I was treated the same, mine was all in my head, stress and Psychohenic!. I nearly gave up and I know my own body and symptoms, and refuse to be fobbed off, just because the Neuro’s don’t have an answer. I am new on here and am awaiting my post to be placed, it is currently with the moderators. Please try and keep your chin up as I am. Please find my post below:
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
Hi Melnic-
what a horrible situation - keep pushing for answers x
You say ‘high intensity signal’ was found on brain mri - do you know how many? I guess maybe if it was one single spot that is not enough for ms dx -
20 years is a very long time. I would have thought that if it was 20 yrs since your first symptoms, and if the cause of your symptoms was MS, then the docs would expect to find evidence on MRI - so maybe the fact that its been going on for 20 years, but there is not evidence of MS on recent scans (and also lp was negative) - then maybe there is a chance it isnt ms? But but since you are having significant neurological symptoms, incl seizures - i find it incomprehensible they would discharge you before working out what is going on. That must be horribly scary. and it is unnacceptable - keep pushing for answers , what a horrible situation xx
do you think it is pos you have had two separate conditions? Is it pos you had ME twenty years ago (which people can revover from - latest nhs info states ‘many people recover well with time - especially younger people’ (and you were 19 at the time) - but that your recent problems (ongoing since 2013) are caused by something else? if that was the case, and you have ms symptoms not for 20 years but for 4, then it would not be terribly unusual for it to be taking a few years to find enough evidence for a diagnosis? you are having more scans next month, so hang in there - it is hard but your next tests are only weeks away, and maybe will show more answers x
ps… I asked my doctor the same question about vit d - I said I go out in the sun lots, why am i still deficient? he said, ‘because the sun in this country simply isnt very strong’, so even when we go out in the sun, we dont absorb vit d as readily as people do an hotter climates - he told me vit d defficiency is epidemic in this country! x