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suffered pain for 26 years

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derek1979
derek1979

when i was 6 years old i woke up 1 day to get ready for school and i got out of bed and took a few steps my left ankle then gave me pain i went to the doctors who said i sprained it but ended up walking on what was actually a broken ankle for approx 2 weeks it was set in the wrong place and i know there is no way it could break unless there was some kind of accident,force but there was none and i would have felt the pain instantly all i did was get out of bed but i thought what about osteoparosis then the more i thought about it how could that be the case when as i played football and rugby in school surely i would have broken other bones as well but when i was 10 years old i ended up with chronic pains in my left leg and back as well as blurred vision and when i was 18 the blurred vision came back and none of my previous doctors where pro active and they did no tests then now these are a majority of my symptoms bare in mind the insomnia is cause of constant pain keeping me awake and i do pass out with the pain but only for about 2 to 5 minutes each time it happens once or twice daily and i am also bed bound due to the fact i and very tired and fatigued so here are the symptoms low vitamin d,muscular pains,tingling and numbness with pins and needles,headaches,chronic pain,blurred vision,clumsiness,forgetfullness,speech delays,itchiness,tiredness persistent,insomnia,fatigue,lack of concentration,depression,anxiety,confusion,panic attacks. i have been off work for a few years now cause of the progressive symptoms and esa employment and support allowance at the dwp say im fit for work but i am in constant agony and am bed bound i just dont know whats wrong with me but atos say im fine but i know im not and im disgusted in how atos say im fit to work when all i want is to live a normal life and work but i know i just cant my symptoms are related to osteoparosis and ms and i have had hell with the symptoms for years i just dont know what to do anymore i just cant cope with not having a diagnosis can someone out there help

0 likes, 9 replies

9 Replies

  • ksobeck0310
    ksobeck0310 derek1979

    Posted

    I am in the same boat as you. Age 14 was my symptom start up. anxiety was diagnosed.....bc of age i guess but it wasn't anxiety. Then Lupus, but it was not lupus, now I have been diagnosed with a cns demylenating disease and white matter disease of brain. Mri supports both brain and cervical bit still nothing. I have crappy Drs who do not take the time t o care or hear. Now i know it is secondary P bc symptoms are always present and getting worse the last 4 years. I have had left leg paralysis a few times lasting a few days to 1 and half....like it was severed but stll felt feeling, So many issues and I am now c o confined to being at home with a cane or walker. I am 29 with 3 kids and I cant even go to a store in a scooter chair with sensory overload that makes me just go into limp mode not being able to function. My swallowing is a big issue al i ng with speech and cognitive to every degree. Back pain is horrible, from neck to tail bone.....muscle spasms and constant contraction has caused spinal and chest deformities. I am sick of being sick and no Doctor cares enough to take it seriously. Every exam points to ms....labs...etc., what are they waiting on? my GP is willing to start iv inferon treatments but, wants to clear it with neuro. The problem is Docs do not truly care and is there for a paycheck and or they fail to remember their oath and have an actual relationship with that patient.
    • derek1979
      derek1979 ksobeck0310

      Posted

      i know but at least i care about those in the same boat as me and your not alone i hate feeling like this and the worst thing is i cant even play with my 2 year old son and i keep forgetting things like what i learnt at school i dont feel like me anymore i dont know whats going on and and dont know how to cope with the severe pain im have been in bed all day just bearly able to get to the loo but have chronic pain in my left leg and back as well as arms all i can do is cry as the pain is to much and its no way for a 36 year old to feel i found out that i have a vitamin d deficiency again and the surgery told me i asked the doctor about prescribing me vitamin d and she said im seeing you in just over a week its not an emergancy i will do it then but it is an emergancy when vitamin d deficiency can lead to several other conditions its not right and im still no where near a diagnosis i just cant cope with it anymore
    • ksobeck0310
      ksobeck0310 derek1979

      Posted

      I know the feeling of this all too well!!! It is a nightmare. Have they prescribed any pain med relief? I take oxycodone 4 times a day, the pain is worse during my sleep and I wake up rather to hurry up out of the bed because of spasms....mainly in my feet, legs or butt, lol. Horrible stuff! Or my back hurts so bad, I feel like I have been beat by a bat and the muscles are so stiff. At best 2 to 4 hours of sleep. Anxiety meds nor Trizinadine cns muscle relaxer will take that away. I have an 11 year old son, and a 4 and 2 year old baby girls. I stay at home with them, and it is not easy.....I push my self hard to the max everyday, and I pay for it....but, it is worth the pain and struggle. Not knowing what tomorrow brings I give my all. I know all too well about the narcolepsy type fatigue. I get spells where it come on and goes back to zombie fatigue. My hobbies have definitely changed in the last 4 years and especially the last 2. I loved hiking up the mountain trails to rivers for miles, I can not even walk up an incline anymore. Oral steroids have been a rescue for me to help the flares decrease in intensity. I actually go tomorrow to the neuro, for yet another probable pointless waste of my time, money and energy. I cannot drive anymore due to vertigo and random onset of noodle legs and of course the cognitive function issue where I just cannot seem to stay on the road at times. I do not know if your religious or not but, I find comfort in devotional's everyday.
  • jugu
    jugu derek1979

    Posted

    Should be able to diagnose from MRI and symptoms, need to see neurologist who specialises in MS.
    • ksobeck0310
      ksobeck0310 jugu

      Posted

      There is one close, but he is not taking new patients. My travel time option is not that widespread either. My GP is ready to send me to MUSC or Emory because last spring I developed hair loss, skin issues (which I had psoriasis mildly already) and since my ANA was slightly elevated without any other lab supported, Rheumy Dr. Gave a Lupus diagnosis. I have had every blood test for Mathensis Gravis(over my congenital lazy eye lids) every lab for pretty much everything, CT of chest and head, xrays etc., but my mri supports a demylenating disease, and cervical has 2 lesions on my spinal cord.
  • derek1979
    derek1979

    Posted

    the doctors have only given me amitriptyline for pain relief as well as co-codimol but still no vatimin d or any further treatment or investigated they just keep monitoring symptoms or thats at least what they say but i cant take much more of it i hate being like this
    • ksobeck0310
      ksobeck0310 derek1979

      Posted

      I take a low dose vitamin D2. My total vitamin D was 32, D3 32 and D2 was less than 4. Buy some at the store or internet. B12 was slightly low cutoff at 200 and mine was 192. I get injections for B12 every 3 months, I cannot tell no difference though. Neuro says I am Hypovitaminosis? Inability to absorb nutrients through food or supplements. Said something about blue eyed people sometimes have trouble with it.....who knows. I feel like when I see him, he says nothing and pushes through the appt. with me being stuck with the nurse. He also treats me like i am a patient with dementia or Alzheimer's. I might be cognitively impaired, more at times than others....but I am not stupid. I am however so very lucky to have my GP relationship awesome. My Mother runs his office so he knows me personally and will push things rolling when others will not. I have a very high threshold for pain and life's obstacles which I guess aided in delay of diagnosis because I do not complain much or am very soft spoken with people in person unless I know them. What labs, radiology exams have you done?
  • derek1979
    derek1979

    Posted

    havent been as lucky as you with the tests as i had a mri done but it was for a different reason and with the vitimin d deficiency i was told it might interfere with some tests but it just seems like they think im stupid when im not and they always stand at the door and cant wait for me to leave i have asked for tests to be done but they just say there just monitoring symptoms i think they will end up just saying its a vitimin d deficiency but you see i have had the symptoms for 26 years and in all those years of having blood tests i have never had a vitamin d deficiency its only showed in the previous 2 tests so they cant keep fobbing me off and its funny you should mention blue eyes cause i have blue eyes and i to have been told that 
  • derek1979
    derek1979

    Posted

    plus it seems so much harder over here to get any kind of answers of our doctors they just dont seem to care
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