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  • Am i the only enigma?

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    Old 11-03-2009, 10:16 AM   #1
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    Am i the only enigma?

    It would appear that after many years of trying to battle an unknown illness, I am a complete enigma in some of the medical proffesions eyes. I don't think I am. I think maybe some people are not looking outside of the box, after all, each illness, disease can bring its own individual symptoms as well as characteristic ones that apply to a definate condition.
    At 35 years of age I started to feel unwel. I define unwel as being constantly tired, unaturally tired, feeling very weak, no energy, left sided spasms, more so when tired. I would be out shopping and my legs became very heavy, I would become slower. Bottom line, I just didn't feel right. My legs began to give out a burning sensation (at times) and pins and needles set in. It would come and go. This carried on for around 4 months, until one morning I got up and took my chidren to school, I felt so tired I couldn't drive the car, so my partner did. We arrived at the school and I forced my way out of the car to the waiting area, before the children went in to school. My partner commented on how grey I looked, I thought more sleep would just help. As I turned to the children to say goodbye, my eyes rolled and I collapsed to the floor. Still awake and concious I lay there unable to move, my eyes were rolling around and my brain felt like it was rattling inside my head. My partner was eventually able to get me to my feet, but my balance had gone. I made it home, still unbalanced, got indoors and collapsed again. The Dr was called and I was admitted for an MRI.
    When I was my neuro I was now unable to walk unaided, I had to use a stick or use a wheelchair. It was like my brain couldn't send the signal to legs to tell me how to walk. When the MRI result came back I was told it was possibly a brain tumour on the brainstem. It was so deep they could not biopsy it, without fear of causing brain damage or death.
    From that moment on my life changed. I had a good four to fiv months of gradually learning how to walk again and regaining some of my strength. I also saw a neuro surgeon who identified the lesion and came to the same conclusion, they couldnt touch it. So ok, fine. Nothing I can do.
    Then the letters between consultant and Dr started coming through. It may not be a brain tumour, because it actually looks like it could be demylinating, ie MS. Well that is surely a better prognosis I think and so the treadmill started.
    I moved from down south some time after due to my partners job and was soon refferd to another neurologist. He treated me as a clean slate, and suggested another brain scan, various blood tests and a lumar puncture. How proactive I thought. Whilst sat with him, I explained my symptoms and history. He said maybe you should see a phsyciatrist. I was rather shocked at this comment, but let it go, I didint have to like the man as long as he investigated what was going on. I had another MRI, I never saw it, he said it was clear and nothing wrong with me. I said could he explain the original lesion on the brainstem, he said there never was one and it was infact an artefact on the scanner. I challenged his view, considering my original neuro had identified it, along with a neuro surgeon. He insisted it was never there, so without actually seeing the scan I really couldn't challenge it, and Im not the proffessional.
    So, I then had a lumbar puncture, it was found to be positive. I was told I had Oligoclonal bands in my CSF. However the bands were also found in my serum. What did this mean? He said just one of those things and still nothing wrong with me. Each letter he wrote, contained paragraphs of me maybe needing some sort of phsyciatric assesment. I was now feeling like a total fraud and begginning to feel VERY low. My symptoms continued. I devloped a tremor that comes and goes in my right hand, the spasms continued, and I started shuffling at times when walking. I have poor short term memory, I lose my way half way through a sentence. Sometimes I know what I want to say, but my mouth just doesnt work. I get head tremors, severe back pain, my posture is awful, my muscles are getting stiffer, cramps in my feet, balance problems, nausea, sometimes I choke when eating. I get brain fog and everything slowls down, I feel very disconected at times and the tiredness is beyond belief. My handwriting is a joke, a spider could do a better job. Its embarrassing!
    However, I seem to relapse and remit, and whilst Im not much worse than I was, there is a slow but sure decline in my health, and it continue to decline very gradually.
    I eventually came to blows with my neuro, after being blue lighted in to hospital. I was physically very ill and eventualy couldnt respond to anyone, my pupils were fixed, I lost all expression and my blood pressure was in my boots. I could not be treated or investigated as my neuro's notes came through again suggesting phsyciatric intervention was needed. They cared for me and sent me home.
    I have been given steroids off an on from my GP, they seem to lift me a little when I go down, but the condition is not getting better and certainly not going away.
    I now attend a pain clinic where they have given me a tens machine for the pain, they suggested physio for the stiffness in my arms and legs, but physio won't touch me without knowing what the problem is.
    So I have hit a complete brick wall. I don't know who to turn to, who to talk to or what to do. My chest is becoming weaker due to my muscles becoming weaker and thats why they give me steroids, but surely to god, I can't just take them forever, what on earth will it eventually do to my bones!!!.
    The bottom line is this. If I have some sort of unknown condition then I am just going to have to live with it, as I do already. But, when the consultants don't know, they say it doesn't exist, and this can make you feel like a total hypochndriac wihich doesnt help the problem. I think that when a person has a chronic illness it can affect the mental well being of that person. It does impact on the patient, there is no getting away from that, and I would defy any person not to feel low when feeling ill for such a long time. However it is secondary to the primary cause and I think consultants, Dr's and the medical proffession would do well to remember that.
    When I get some more strength about me I may well go back and insist on answers, no doubt it will be another struggle. I feel totally let down, not by my GP but by people who play god with my life because they cannot find an ounce of compassion or really listen to whats going on. I cannot make this up, the tests came back positive, but for WHAT??????........

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    Old 11-03-2009, 06:59 PM   #2
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    Re: Am i the only enigma?

    I am empathetic to your situation.I pray that you will find some relief very soon.
    The body is so complex that we are mostly lucky that a diagnosis is definitive. I
    have an "inner ear disorder" that causes dizziness at times.I looked at a drawing of this "inner ear",and it seems that the ear and our complete sense of balance,are co-mingled in one big blob.All that stuff is between our ears,and looks
    too convoluted to separate.I would think that some relief could be anxiety pills.
    I will pray for you. Bill

    Old 11-03-2009, 11:56 PM   #3
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    Re: Am i the only enigma?

    Hi Tinkertot,
    I understand neurological problems are very hard to diagnose so this maybe explains the contradictions you have experienced. It's more than frustrating though isn't it? It's frightening I think. I have had similar problems for years. This year they are back and are very aggressive. I'm waiting for the referral to come through but terribly impatient. So, today I begin an experiment after hearing a story and reading some research by neurologists in Sheffield. I'm going gluten free. I'm too tired to write much more now but I'll post my findings.
    Don't give on the idea of feeling well again and don't let insensitive people make you feel bad about yourself. There are so many unknowns.

    Old 11-10-2009, 01:51 PM   #4
    destiny dawn
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    Re: Am i the only enigma?

    Just want you to know that I feel for you. I spent this last year complaining of not feeling well and never got a single test, despite seemingly serious symptoms. now i have a tumor and even more alarming symptoms and only now have plans for treatment and surgery been put into place. now i have to wait weeks more because I am on the low priority list being as I am a "healthy young adult with no past medical issues" according to my charts. I've seen about 20 different doctors on hundreds of occasions this last year complaining of EVERYTHING from pain to disability to emotional and nervous system problems.
    I know how doctors can disregard your most serious concerns and I too feel completely let down and judged and I'm SO SICK of hearing that my symptoms are ALL stress-related. this is why I resort to websites where regular uneducated people can try to help eachother get help through knowledge since doctors are merely concerned about prescribing treatments and not about finding cures.

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