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The ten year limbo

This all started a long time ago. Back in 1981 I had an attack that made me completely numb down my left side. Like having a zip down the middle. It out out for over a week & I avoided contact with people as I had slured speach & other cognitive problems. I then had another in 1986 whish wasn’t as bad, i then had another in 1996 which was unpleasant but in 2006 what can only be described as a total nervous shut down. I could not walk unaided for three months. I was bed bound for three weeks. Balance failure, vertigo, double vision, tingling, tremors, problem with bladder control, spasms, altered perception. Numbness, i had it all and couldn’t go out on my own for 6 months. The only doctor I saw who made any sence at the time said to me that what I had was serious & had rewired my brain. Ever since that date I have symptom that seem to flair up then go away, I have had the brain MRI but nothing showed up, that was 6 years ago. But over the last couple of months I have been having a major flair of symptoms, I keep getting really bad tremors in my arms and in my left leg. Also have a feeling of detachment in my left arm & it feels weak. Also weak feeling in my left leg & sometime it moves funny when walking I can trip over my own heel! The last consultant I say said that I may have Benin MS but would not do a lumber punch or give me an MRI with contrast! I have found evidence that the term Benin is not founded!! Since then another specialist has diagnosed me with functional neurological disorder… I’m now angry & confused. Which is it, MS or FND. i mighht also add that I have awful coordination in my left arm, a dreadful short term memory,lack of concentration, fatigue, tiredness, pains in joints, constipation but to name a few. I would love to hear your thoughts as I’ve had enough & feel very down & think I may be suffering now with anxiety.

Hi There

Just seen this post.

I had my first attack in 1990 with l’hermittes following radiation treatment for hodgkins lymphoma. Scan was OK. Then in 2005 I had numbness down left arm scan was normal. Then in 2008 biggish relapse weakness foot drop l’hermittes again. Didnt have scan but doctor said it was hypothyroidism. |Got better after 12 weeks but then a year later started to get foot drop after a long walk. Had scan in 2011 and lesion seen on cervical cord. LP in 2012 which was negative so neuro said not MS and I have had a CIS which has caused some permanent progressive damage.OR this is all due to the radiation damage that I had in 1990.

Moyna x

Well I have come to the conclusion that many people are not diagnosed correctly & it would appear that their is a postcode lottery when it comes to neurologists. If was you I’d ask to be referred to the neurological centre in London. That’s what I’m going to do. I was diagnosed with FND so when some neurologist see that think it’s in head! But with FND your not supposed to have symptoms from past events! I do, so I know that the diagnoses is incorrect! As I said before, unwound get a second opinion or get yourself referred to London. Hope this helps