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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. 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 the neuro said I don't have M.S, 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. Can anyone relate or advise, I am so sick of being consistently I'll. I can't drive or work any more either.

melsywooh wrote: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, numbness badly in feet n arms, electric shocks in face, and rigid jaw, pins n needles, brain fog, headaches, spasms and pain in limbs. 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,this 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 the neuro said I don't have M.S, 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. Can anyone relate or advise, I am so sick of being consistently I'll. I cannt drive or work anymore either.

Welcome to ThisIsMS, melsywooh. You have certainly had a terrible ordeal! We are glad you found us. I am not sure that any of us will presume to have the answers you need, but we are willing to share our experiences and ideas.

My personal suspicion is that excess insulin (and resulting insulin resistance) is responsible for many MS (or "neurological") symptoms.

You need to find a good GP or internist, who sees the WHOLE body, who is compassionate and enjoys being a "disease detective." I am not sure that a neurologist is necessary at the very beginning. I tend to believe that if you see a surgeon about a problem, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." I think the neuros who suggested your symptoms were "psychogenic" were WRONG!

You have certainly had a huge battery of testing! I doubt that you have had a "fasting blood insulin test" since this is not routinely done and must usually be requested specifically. I suggest you ask your doctor for this insulin test. This is not the same as a glucose test. My fasting insulin test results have never been below 9 UU/ML – the optimal result is 3 UU/ML or lower. I know that MS is difficult to diagnose; my first three MRIs were "normal" and the hallmark lesions were not seen until my fourth!

My personal belief is that Intestinal Permeability allows too much insulin to leak from the intestines into the bloodstream; and then, the excess insulin damages the interior of blood vessels, thickens and stiffens the smooth muscles (which surround the urinary bladder and all blood vessels), and even affect the skeletal muscles, which may account for many of your symptoms.

Thank you for the reply and detailed info, coincidently , I had a huge amount of bloods taken a week ago, and I have a high white cell count, probably from the repeated throat infections a low levels of vitamin D I have to take a prescription for the next 12 months . I eat fish a lot and am often in the sun, so I have no idea why that level is low? And it's never been low prior to me becoming down ill 18 months ago,, apparently vitamin D maybe linked to M.S, but I was told I don't have M.S as my MRI which is now a year ago was essentially normal. Any thoughts guys? Thanks all