Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • May 27, 2011
  • 08:34 AM

hello i'm 40 years old, and was told by my medical practitioner that i had MS, i have tingling in my head, white flashing in my eyes, my eyesight can sometimes be real bad, i've lost feeling and movement in my foot, i suffer jerking at night, muscle cramps at night and during the day, and spasms, my muscles go through stages of hurting and aching like mad, making it very difficult to walk far, i lose my balance alot, i've fallen and broken my arms 5 times in the last 3 years, i have short term memory problems, and painful joints (that may be OA) i take medication for pain and a muscle relaxant at night, when i was first told i had MS i was asked if i wanted to see an MS nurse, i declined and said i would if i got real bad, i didn't see the sense in taking up a nurses time when someone worse off then me could do with it, so i just proded along and got on with it, and delt with anything that came along.

in february this year, i recieved a phone call for my doctor saying she was wrong, i didn't have MS, that she had read a report from a brain scan i had had wrong, that they were questioning MS, i had another brain scan in march and go back for the results in september, no one has explained anything to me, i have no idea why i had the brain scan, i was told at the time, they just wanted an update, because it had been a few years since i had one, and that it is, i'm still on all the same medication, well mainly because my symptoms haven't changed, infact i would say they have got worse, but i don't know what to do or who to talk to, i've tried talking to the doctor, but she just says, ''you don't have MS'' but i want to know what the ***l is wrong, just because i was told i didn't have MS it didn't make the symptoms go away or any better, i've tried to convince myself i don't have MS to see if anything changes, but it doesn't, my husband and children were so relieved i didn't have MS but are now worrying at what is wrong, and if the brain scan comes back showing i have MS my husband and children have to go through it all again, and try and come to terms with it... again,

i am so down, i feel as if no one is listening to me, i feel like i'm screaming out inside,

any advice would be very welcome as to what i could do, thankyou for reading, i feel alittle better just writing it all down.

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2 Replies:

  • MS is diagnosed throu brain scans and spinal taps.. the doctor shouldnt have told you had MS without clear evidence you do. i lose my balance alot, i've fallen and broken my arms 5 times in the last 3 years Its quite obvious you do have something very wrong as loosing balance a lot isnt normal, breaking bones a lot at your age isnt normal either. OA usually starts at 40 but can start earlier in some.. one wouldnt expect someone to be getting breaks due to it at only 40 thou. I suggest to get a copy of your brain scan (and all your other tests) and check out what they say for yourself. Sometimes "non specific" abnormalities are found and Ive found they tend to dismiss them if they cant relate them to a specific illness. Also there can often be clues in blood test results to things .. doctors often ignore abnormalities there. Posting the findings here.. someone may be able to advise. Im confused why they are making you wait so long for your results. (I often phone ahead and get copies sent to my doctor to collect at his desk).
    taniaaust1 2267 Replies Flag this Response
  • Hello taniaaust1, thankyou for getting back to me, i go through stages of being really bad and i am at the moment, which is why i would post for advice.My first scan had problems in the white matter, i wasn't told what but that ''it was nothing to worry about'' I'm just alittle concerned, that for a year i was told i had MS, everything i went to my MP about was put down to my ''MS'' so nothing on that front has been investigated any further, i had some blood done about 2 month's ago and was found to be ''near empty'' in vitamin D, i am currently on 8,000 IU a day, and was told all my muscle pains, the spasm's, cramps, and jerking were because i was so low in this vitamin D, i've been taking them now for the two months, and last week, went down poorly again, where all the symptoms get really bad, i feel so tired and alittle down, its when i have these bad days that i have jerking of my head during the day and night, but its my muscles, they are so painful, even typing i need to rest alot, i did feel abit better in my self after being on the vitamin D tablets, but the pains etc were still there.Please don't get me wrong, i was over the moon with the result i didn't have MS, like anyone would be, but that happiness was soon drowned out by still having all the symptoms and wondering what else it could be, i was also alittle cross that everything i went to the doctor about, which most of them were worrying us like mad at the time, was put down to the MS. Anyway, i am going to take your advice and ask the neurologist department if they could send me the brain scan results, i done this last time, as it was such a long wait for an appointment to get the results, i will go through all my paperwork too, to see if i can find them results, i remember not understanding them but saw it was nothing to worry about.thankyou again for all your advice, sara.
    Anonymous 42789 Replies Flag this Response
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