Told I don't have MS

I recently had a cystoscopy for chronic UTI's, the day after I had an awful headache that didn't go away, a few weeks later I suddenly swelled up with fluid, I lost feeling in my hands and feet, had heart palpitations, abdominal pain, visual strobing and nausea, my head felt like it was going to explode, I thought I was going to pass out and was having trouble passing urine.

When the swelling began to go my hands and feet got painful pins and needles and I had weakness in my legs (epsecially my feet and ankles) I had vertigo, could not walk properly, felt like I was going to fall and my legs were shaking and buckling, my limbs felt heavy and strange. I lost my sense of taste and kept burning myself because there was a delay in feeling sensation, I kept dropping things, had muscle twitching, hands shook and could not tollerate cold (would start shivering uncontrollably) cold would also quickly bring on profound exhaustion and later pain. A hot shower helped with the pain but it made me so weak I found it difficult to get out (my shower is one of those ones over the bathtub so I have to step over the side and down to reach the floor, I still can't believe at my age even I even have to think about something like that). I had short term memory loss and could not do simple calculations, couldn't cook without walking off and forgetting the stove was on. I forgot familiar words and could not sign my own name, I lost part vision in one eye, I also (ironically) had euphoria and would laugh or burst into tears without provication, very embarrasing but the least of my worries. This went on for 2 weeks. My GP thought I might have MS and refered me to a neurologist. A unenhanced MRI was normal as was a nerve conduction study, no EEG or LP was done. MS was ruled out. No explaination as to the cause was given other than "probably a virus".

I have been left with residual limb weakness, uncomfortable tingling, pain and clumsiness. My GP has tried SSRI's, seizure medication, slow release paracetomol, and an older anti-depressant to manage the pain, none have really helped, some caused more side effects than the relief they were meant to give. The last few days the pain, tingling and shaking has got bad again. I can't wear shoes with a heal and still stand up, the toes on my right foot bend funny making them painful to walk on, shaking legs make stairs tricky. I now also have worse twitches where rather than just being able to see wriggling under my skin my whole limbs jump. I've been getting tight chest pain (apparently not cardiac), my feet get painful spasms and my hands cramp up. If it's not MS then what is it?

I'm a 40yo female. Family history of type 1 diabeties, osteoperosis, thyroid and sleep apnea. There has also been kidney disease, rhumatiod arthritis, sudden unexplained death (50yo, cardiac testing had been negative), bowel cancer and shingles in the family. I was diagnosed coeliac disease, on a strict gluten free diet (going on 4 years), highly symptomatic for nearly 20 years prior to diagnosis which did a lot of damage, positive genotyping but the first in my family to be diagnosed. I have osteoperosis and take a vitamin D supliment, D was low but is now corrected after large doses monitored by GP, osteoperosis stable. Negative for Vit B deficiency, full blood count, rhumatiod factor, ena, ana, basic thyroid panel, HIV and diabeties. I don't know if it's relavant but my eyes have become so dry I now have to constantly use eye drops. My hair and skin has gone dry too and my complexion keeps changing from a grandma spider veins flush to break out blotchy, to a lovely morgue palour through to slightly yellow. My throat is sore but not red, neck looks a bit swollen, voice deeper and goes husky, temprature a little low, I get chills, night sweats and have low blood pressure and a low resting heart rate. I'm also putting on weight (I'm on a standard 1200 cal a day weight loss diet after suddenly putting on more than 10kg without explaination, the gain has slowed on it but I'm not losing weight, I measure and write everything down including sugar free products and fluids other than water although compared to going gluten free a simple weight loss diet is a lot easier) I don't have a car so walk a lot, albeit staggering. I have a slightly high free testosterone level although my cholesterol is normal and no diabeties although I had previously been told I had PCOS, so why isn't it responding to a low calorie, low fat, low GI diet?  

What do I do now? I was told by the Dr at the hospital I wasn't likely to get a diagnosis from a GP and I would need to see a specialist, problem is which one? I was told a cardiologist for a stress test because of the chest pain and the pain clinic but nothing else, what about the cause of the pain and the loss of function? I'm not even confident a specialist will find anything, 2 gastros missed the coeliac and my symptoms were obvious and classic, shouldn't I be going back to the clinic that diagnosed the coeliac? I'm thinking about seeing a natropath, although after seeing what a missed coeliac diagnosis can do I'm not keen to let this one slide but I'm not up for another 20 year long battle before I get any treatment either. I'm exhausted and fed up, I'm living healthier, technically am healthier, better diet, less stress, quit smoking, don't drink, low processed gluten free food. All I can think of is undiagnosed/untreated coeliac really wrecked my system, first year post diagnosis I had such an improvement I thought I might actually get my life back, I hoped too soon, shouldn't I continue to recover? Why did the improvement stop and why am I suddenly getting sicker, and why all the new symptoms? Is there anyone out there who can at least give me a clue as to what is happening to me?

[shellspicasso]

Anyone?