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has anyone had anything like this happen

Posted , 6 users are following.

vicky89033
vicky89033

i will try to keep this brief but it is complex and i cant get any help or diagnosis. My neuro symptoms started with off balance/spaced out feeling 3 years ago since then ive been to many specialist and still no answers. my symptoms have been life changing and im now in constant pain and housebound.The symptoms flare up and change alot. I also have bad gastro problems, skin rashes and painfull stinging veins throughout body that i didnt have prior to all this starting. my neuro symptoms are head feeling swollen mainly right side,numb/tingling feelings (now whole body) crushing headaches,jaw,neck and ear pain, painfull eyes,blarred vision,painfull joints/muscles,dizzy/near collaspe feelings (not vertigo no spinning) low blood preasure,dry mouth,ulsers,tinitus,burning skin feeling and proberbly more the list is endless now. The worst so far is on thursday i went to an outpatient apt and can not remember getting out of the taxi but obviously walked into the reception were i told the nurse i felt ill she lied me down in a side room my head,eye,jaw and ear were stinging and felt swollen then my legs and arms went numb but painfull when the doctor was ready i couldnt feel my feet or co ordinate to walk through they then got a porter and took me to A&E the doctor there thought i had bells paulsy? and sent me to the local medical assesment centre i was addmitted but in 24 hours got no help and was sent home again. I cant remember what happened properly and im now very scared any ideas would be helpfull im at home feeling like im only going to get worse and no one will ever diagnose me

0 likes, 13 replies

13 Replies

  • Zapamania
    Zapamania vicky89033

    Posted

    Hi Vicky I've never heard of so many symptoms so scattered.  You definitely need an MR Of your brain.  That would be the most likely place to start.  So make an appt. with a neurologist.  That would be a good start.  Wish you well

    • vicky89033
      vicky89033 Zapamania

      Posted

      thanks for your reply, i have a neuro apt on thursday but this will be the 3rd this year i did have an MRI scan in july it showed cyst on my brain but it hasnt concerned the doctors. i am hoping this latest episode will be taken seriously as you say my symptoms are scattered and dont seem to fit any patern so its baffled specialist
  • Guest
    Guest vicky89033

    Posted

    Vicky, may I ask your age? Your symptoms sound a LOT like several women on our perimenopause/menopause group. There are al least 66 symptoms us women suffer on that group and you just described lots of them. Maybe run your questions throug there  you can join the group from here just type in perimenopause/menopause . I thnk you will find other women exeperienceing simular to same symtopms.. 
    • vicky89033
      vicky89033 Guest

      Posted

      hi thanks for the advice. i will post on the menopause group and read others experiences. i am 50 and expected to have started with the menopause by now but my GP has blood tested me for this and said im nowere near even peri stage!?!
  • ihavenonickname
    ihavenonickname vicky89033

    Posted

    Bell's Palsy effects the facial nerve on one side of the face.

    You need an appointment with a neurologist and you need a cranial MRI...your symptoms cause me to think of multiple sclerosis which is now treatable.

    • vicky89033
      vicky89033 ihavenonickname

      Posted

      thanks for your reply, ive got an apt with a new neurologist on thursday. MS was tested for in 2015 MRI scan but i will bring this up again as i have all the symptoms and it has been progressive are there any other test for this? i had a MRI again in july im not sure if it was cranial
    • Zapamania
      Zapamania vicky89033

      Posted

      Hi Vicky yes the other test for MS is a spinal tap.  You would actually have to have both an MRI with contrast and a spinal tap to have the fluid tested in pathology to rule it in or out.  Best wishes
  • malcolm86164
    malcolm86164 vicky89033

    Posted

    Good Morning Vicky,

    Sorry to hear you about your sickness but I can't s say or do anything,

    to help you I wish I could.

    all the best to you in the future.

     

  • kate85294
    kate85294 vicky89033

    Posted

    Hi Vicky

    My story is kind of like your story. None of the neurologists or GPs could tell me what's going on. Even with my recent brain MRI which found several tiny white spots on both of my frontal lobes. But none of the five neurologists that I went to could tell me how and why I've got those. The only thing that they told me was we don't know and surly it's not MS. Beacuse the spots were not in the typical place for MS and I did not show any nerologycal problems.

    Here is the rest of my story.

    I really need help beacuse I am very confused over this pain. It's been years that I am suffering from this stiffness. At first it began from the back of my left shoulder then it reached the left side of my neck then upper left side of my jaw got little swollen then inside of left ear got painful then it reached my left eye and left upper side of my skual.

    Recently when I try to swallow my food I feel pain inside of my throth specially in the left side. Also the eye pain got worse with this stiffness beacuse when I lie on the left side I can see the black shadow in the left eye that goes away slowly when I sit up.

    This pain and stiffness doesn't stop there it radiate to my left arm, left hand, left breast, left leg and all the way down to my left foot. Sometimes my left foot gets so much painful that I should massage it with the ball hoping to reales the pain. When this pain radiates to the left side of my scalp it makes it very sensitive to touch and the only thing that I do is to pull and hold some of my hair to reslase the pain.

    I am constantly massaging my left side from up to down. The peack and head part gets more massage. I really don't know what I am suffering from I just know that when I get stressed out this pain gets worse.for this reason I did many blood works to see if I have any inflammation, immune system problem, Ciliac or lupes and all came back fine thank god. Doctors don't know what's wrong and look at me puzzeled. I am afraied that it might be life threatening condition beacuse of the involvement of the beach, head and eye. I keep thinking that what if it's blocking my blood flow to my eye and that is why I see the black shadow or it stops the blood flow to the left part of my head. I am so confused. Please let me know if anyone of you have suffered the same problem and if yes what did the dr say. by the way, I am 38 years old.

    Thank you

    • ihavenonickname
      ihavenonickname kate85294

      Posted

      has your Left Subclavian Artery been considered...a stenosis perhaps...not the blood, the actual artery.
    • vicky89033
      vicky89033 kate85294

      Posted

      your symptoms are very similar to mine i saw a new neurologist yesterday who was very good he thinks possible chronic lymes disease and isnt the 1st specialist to mention this. they have suggested a PET full body scan to see inflamation as my body is obviously reacting to something. i hope its nothing serious but realy want to know whats causing all my symptoms. i wish you look in finding out if i can be of any help re test or specialist just ask i have been to so many. i do know ciliac blood test are sometimes wrong and my doc sent me for a biopsy to make 100% sure (its not as bad as it sounds with sedation)
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