Desperate for answers! M.E ?? M.S????

[melnic]

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

[Red_Star]

"Romberg's test is positive in conditions causing sensory ataxia such as:

Vitamin deficiencies such as Vitamin B12 (cobalamin)

Conditions affecting the dorsal columns of the spinal cord, such as tabes dorsalis (neurosyphilis), in which it was first described.[1]

Conditions affecting the sensory nerves (sensory peripheral neuropathies), such as chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).

Friedreich's Ataxia"

I wrote indepth about B12 and vitamin D on other questions....

http://www.medhelp.org/posts/General-Health/Vitamin-Deficiency-/show/1786254

http://www.medhelp.org/posts/Thyroid-Disorders/B12-Question--A-Rant/show/1761943

[missyrn0514]

What part of the country do you live? I can remember in my advanced assessment class my professor saying the vast majority of those living north of the mason dixon line are deficient in Vit D.

I would have to agree wit JJ on getting the supportive evidence on what its not into your records so the healthcare providers can focus on what it is.

Missy

[supermum_ms]

Hi and welcome,

I'm sorry that you've been dealing with so much and still not any closer to understanding what is causing this! There is a lot that you've mentioned that makes a neurological condition seem possible but if it's MS, from my perspective i'm quite doubtful. Mainly because your symptoms seem to be symmetrical (feet n arms, eyes, limbs etc) and sx's in all peripherals, or bilaterally in both upper and lower, would not be typical of what happens if the sx's were caused by MS.

Honestly, the reason why the neuro would be thinking it is probably psychological, is because you're having "non epileptic seizures" and that is consistent with there being a psychological issue. For your sx's to be neurological, there would be some supportive clinical and MRI, EEG, Nerve  etc test evidence and because there isn't, it adds more weight to 'suggest or lean towards' causation being psychological.

I am not saying it is being caused by a psychological condition (eg conversion disorder) but because psychological has been stated as cause by the neuro, its in 'your' best interest to get your mental health fully investigated, if you haven't already. I know you said your ME Dr had you seen  by his colleague who is a clinical Psychologist, but it wasn't clear if your mental health was actually assessed or not. If you already have been assessed then your non-epileptic seizures really needs further investigation, and make sure you get that written report into your medical records!

It is in your best interest to have supportive evidence that its not psychological, along with every other test result, so you can shut the incorrect theory's down and get the Dr's back to looking for a physiological causes instead.  

Take care of your self...........JJ