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Hello
My story is a long and complicated one so I will try and keep it brief not to bore you all . I have two other conditions ehlers danlos and Postural Tachycardia Syndrome both diagnosed over 2 years ago after over 20 years of symptoms ,and been told I was a hypochondriac in a nice medical way of course!. Apparently quite common for this with these conditions as rare. So as you can imagine, I don't have much faith in doctors.
I have had various new symptoms on and off for around 5 years. Including, extreme temperature sensitivity, flashing lights/pain right eye, episodes blurred vision in right eye, numbness, burning, tingling in limbs, unable to empty bladder properly need to ISC at night, vertigo, falls and just feeling very faituged and hard to keep up with conversations. In five years I have gone from working full time and studying to managing 2 days and really not having much of a life as so tired and dizzy. I thought maybe this was due to my POTS syndrome getting worse.
It was only when my physio found clonus, sensory loss and brisk reflexes that I saw a neurologist my Gp mentioned MS which freaked me out. An Mri was done by Gp in May and it only showed prominent peri vascular spaces and vascular loop in ear. Which I have been told is nothing to worry about.
Anyway, when I saw neurologist where the POTS was diagnosed , last week he was quite stand offish. This is because I had to complain about the nurses at the same department, as I had been trying to contact them for 6 months and they just ignored me awful really. Before he even tested my reflexes he said I am not convinced you have clonus. He did test them and just said there brisk but normal. He said if I had MS it would definitley have shown in a scan. Is this true?. He is going to repeat scan (without contrast) in 6 months and I think he is referring me to eye doctor, and a balance doctor. I just have no faith in doctors and he was so abrupt but he did soften towards the end, when I tried to convey how difficult things have become. I am not a complainer, I try and get on with life as best I can but I am a shadow of the person I used to be. I have felt quite depressed this year too which is so unlike me just really unmotivated. Too scared to tell anyone in case they put all my symptoms down to that.
I would just really appreciate any advice in reference to tests do these sound thorough was just wondering about lumbar puncture but really do not want one if possible.
Sorry for long post.
Thanks
Hi everyone hope youre all as well as can be
ive hopefully had my last blood test fo 3 mths if the results of this one are ok then i stay on gilenya which il be very happy with. I still have a lot of trouble getting around on my own ive eventually had to use my stick even for that little bit support, my legs constantly ache and on a night time there so stiff i have trouble bending them, suppose the good thing alot of the tingling has settled down
susan x
I have seen 2 neurologists and 3 rheumatologists , one pulmonologist, One ENT , one allergist, gastroenterologist, etc,I have had weird symptoms for 9 months that nobody can diagnosed. It started a few days after I had a steroid shot in my back for a herniated disc. Got Tingling /numbing sensations for a month in one of my feet. That was gone. Then nausea. burning of nose for 6 months along fatigue weakness, pain on my eyes etc.. To add to this , I have 3 brain aneurysms and I was told headaches and dizziness are the symptoms of aneurysms which I don't have. I had a procedure for 1 aneurysm in Houston, Tx and I am going to have another one in June for the 2 small ones. >Can any of you please tell me how long it took you to get diagnosed and what tests detected this. I already had an MRI of the brain, an MRA and an angiogram due to my aneurysms and no white mass was detected for MS,Please help!!The 2 neurologists I saw said there is no way I have MS.Thanks in advance for your help. I have gone through lot with health issues in the past 9 months.
I had the tests done, luckily enough he said he had enough info from the first tests and would not need to be sticking needles into me. According to the hospital patient leaflet he was supposed to discuss the results with me, but he said I need to wait for my next appointment to come through for neuro. (sorry, I read the leaflet wrong lol, discuss with referring person)I am not taking this as a bad sign but I am so sick of trying to find out what is going on(I think I am feeling this way as I am exhausted from the travelling on the buses). I am 47 feeling 97 lol. So now I am shattered and I want to go and put my feet up for a while. Will get back to you all soon XXXXX
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