Discussions By Condition: I cannot get a diagnosis.

Tired of feeling ill, tired of no diagnosis

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: emthejayne
  • January 5, 2007
  • 11:11 AM

Hello all, I have just found a couple of forums and started reading some of the postings and already I feel a little brighter. Like so many of you, I am ill but haven't been diagnosed, it's reassuring to read other people's stories as you start to feel like a fraud when the doctors can't offer any resolution to what's wrong with you. I have felt unwell for so long, I've forgotten what it's like to feel normal! I've been pushed from pillar to post, been given flimsy possibilities, had countless MRIs, blood tests etc, in the end you start to feel stupid and a little paranoia creeps in....as no results are conclusive you feel you're wasting everyone's time. My symptoms have been going on for years now, very gradually getting worse and more of them. These are all of my symptoms that I've had at one time or another: pins/needles in left arm/leg, numbness in left arm/leg, muscle weakness in both arms/legs, itchy/tickly muscles in both arms/legs, severe neck ache, extreme tiredness, chest pains. More recently I've had bad headaches, my vision has "slipped" a couple of times and generally feels a bit slow and not as sharp as normal, pressure headache at base of skull - like someone's blowing up a balloon inside my head, I also get a strange rash appear just under my chest on rare occasions - it's red and it's round (of varying sizes). All these symptoms have been going on for a number of years and, like I said, I've forgotten what it feels like to have a clear day without at least one of the above symptoms. It's even more depressing when you go to the doctor's when a new symptom presents itself and you start going through the previous bouts and so starts the rollercoaster again, except it never stops :-/ I would love someone to say..."this is what's wrong with you..." some vindication would be a relief. If it's not the obvious like a broken leg or a sore throat you get placated but not really taken seriously. It can feel quite isolating at times, you get fed up of saying you feel unwell - so when people ask you just say "yeah, I'm ok" when you're not. That's my whinge over...any ideas anyone?

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11 Replies:

  • Go to my thread, Lindsayx12 , and see if you feel like I do. I am in the same boat with doctors and it is frustrating and totally discouraging. I just keep reminding myself that I have to be the strongest advocate for my health issues. I feel that what my doctor doesn't know (or have time enough to research) isn't going to kill them, but it is killing me. I live with a friend now who sees how difficult each day is for me. If you have someone who sees you trying despite your illness, it gives you an ally to take to the doctor and helps you to see that being healthy (because you probably can't remember that feeling) is not what you are right now. I just look forward to the day when I get a diagnosis to being able to send it to the doctors who didn't dig a little deeper to help me get better. Sometimes I'd like to tell them off but it will be more effective to let the right tests speak for themselves. I have a terrible memory right now but I have read conditions that effect one side of the body with your symptoms. Try a search on the internet targeted with symptoms that effect one side of the body. Best of luck.
    Lindsayx12 29 Replies
    • January 5, 2007
    • 08:57 PM
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  • Well this can't give you a "real" diagnosis, but maybe can give you ideas and answers. Try www.yourdiagnosis.com it actually might help you a bit. The test is a bit long asking you questions about your symptoms and how severe.It is horrible and terrifying not knowing whats wrong with you, my 13 year old daughter has been sick for a while and the doctors really don't know why.I hope you feel better soon. IF you start feeling chest pain that is severe go straight to the emergency room, chest pain is never good.Did you get your heart checked?I hope you feel better soon. -Amanda
    Anonymous 42789 Replies
    • January 5, 2007
    • 09:07 PM
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  • thanks for the responses. Lindsay, poor you! It's not until you get on these forums that you realise just how many other people are in similar, if not the same, boat! In a way, it's reassuring - in another way it's worrying that so many people are suffering with seemingly no light at the end of the tunnel :-( I've looked up sooo many diseases, viruses etc lymes, pernicious anemia, MS....all of which present some/most of my symptoms. Most of the time I'm accepting of the fact I feel about 80 when I'm only 38 - most of the time I'm accepting of the fact that I'm in constant pain, however some days I just feel like screaming! It's worse because you can't excuse yourself to your nearest and dearest by saying.."I've got this....." Maybe one day I'll get a diagnosis - sad thing is, it's taking so long even if they do say something I probably won't believe them..I'll think it's another brush off!! Amanda - yes, I have had my heart tested (as best it can be ECG and blood test to check activity within the previous hours when I had a severe episode a few years back) it came up normal :-/ I'm not overweight but cannot do any excercise due to the pain I'm in. One thing's for sure...it's not until you start delving that you realise just how many diseases, viruses and ailments are lurking out there! :-/ Hopefully, we'll all get some resolution soon xx
    emthejayne 2 Replies
    • January 5, 2007
    • 11:05 PM
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  • http://www.ourlittleplace.com/jackimcs.htmlPlease read this link- this is what I am coming to realize to be a huge factor in my health for the last 10 years and it went without notice.
    Anonymous 42789 Replies
    • January 5, 2007
    • 11:22 PM
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  • I read this link & it is very interesting. I do believe that in some way these things could be contributing to all of our medical problems. But, there is no way that a person can do that (that is middle class) just to see if it works. Something like that costs alot of money that most people do not have. We have to live in mobile homes (because of maybe divorces & such). We have to buy cheap products out there (because we do not have the money to buy the expensive stuff because of possibly paying for child support). We do not have the money to constantly buy healthy food (heathly food cost the poor person a fortune). This is just the truth.
    Anonymous 42789 Replies
    • January 6, 2007
    • 01:43 AM
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  • I think a person can work around it- even if you are in a diet of organic rice and beans, you'll be healthier than eating process food. Junk food is not cheap.You might need to commit to chop a root in 3 pieces and make it 3 courses and eat a handful of organic fruit. But you will be better off. Think about all the money you'll save in pharmacy remedies.I just bought the bon ami all purpose cleaner, it was only 99 cents plus tax- I'll use that for all over my place.I think information is power. At least with it we can make better decisions in the future.
    Anonymous 42789 Replies
    • January 6, 2007
    • 02:18 AM
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  • I have fibromyalgia and this sounds exactly like that too me especially since fibromyalgia isnt diagnosed through a blood test and a lot of doctors arent smart enough to connect the dots. Id look up some things on that cause this sounds too familiar with the fibromyalgia symptoms
    erin23 19 Replies
    • January 6, 2007
    • 02:35 PM
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  • I have fibromyalgia and this sounds exactly like that too me especially since fibromyalgia isnt diagnosed through a blood test and a lot of doctors arent smart enough to connect the dots. Id look up some things on that cause this sounds too familiar with the fibromyalgia symptomshttp://www.gloriagilbere.com/InvisibleIllnesses.htm
    Anonymous 42789 Replies
    • January 6, 2007
    • 02:38 PM
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  • I have fibromyalgia and this sounds exactly like that too me especially since fibromyalgia isnt diagnosed through a blood test and a lot of doctors arent smart enough to connect the dots. Id look up some things on that cause this sounds too familiar with the fibromyalgia symptomsHi Erin,thanks for this, I've just read up about fibromyalgia and the symptoms do sound oh so familiar. What concerned me a little is that not all my limbs ache/hurt at the same time. Sometimes it's the left side only, sometimes it's both sides. I've had this unyielding headache for over a week now, am due to see my GP again on Weds and have had yet another blood test. I am making notes of all possibilities and will plead that I be tested for absolutely everything that has my symptoms, I've had enough. That point on the fibromyalgia site is good where it gives the reader a little test to do, clasp their shoulder and press hard, then harder still and that is someway indicative of how the sufferer feels!
    Anonymous 42789 Replies
    • January 7, 2007
    • 10:05 AM
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  • Have you watched mystery diagnosis on TV? There is a case with someone getting a rash that goes away and they feel terrible, and get diagnosed 10 years later by some specialist. It was some very rare disease, maybe genetic. Finding a genius doctor at a top clinic is important--specialists in rare diseases. Just regular doctors are not as special and capable as the top research ones in the very few clinics around the country. I think Johns Hopkins or someplace has many specialists.Your regular doctors will be looking for common things because they are just good to above normal, but as they haven't helped you you need someone who is really excellent. That means asking for someone top in their class, who may not even be within an hour or two from your home.As far as environmental factors like the food to eat and other products, I agree with other people. Using good products is not expensive, because they work better and more. Farmers markets, old fashion products, and basic foods are cheaper than processed or fast foods, etc.. Get a really good water filter, consider that maybe there is some environmental factor like local pollution in your home or neighborhood that you don't know about. Maybe moving would help that, if you haven't moved far away since your symptoms began. Many people died from poor water.My family has also suffered from mold, and unfortunately from using too much soap in the laundry. The soap doesn't all give rinsed out of the laundry, and it can affect your health dramatically. To see if this is happening to you, first immediately reduce the amount of laundry detergent you use. You're stuff probably aren't so dirty anyway. Take a pillowcase or a shirt and a big bowl of water. Squish the fabric around in the bowl of water to try to get suds. If you see soap suds you need a new washer or stop using so much soap. Use hypoallergenic products. Consider all factors in your home environment from air to pets and radiation such as radon, power lines. Who knows what could cause this?Then you need to consider your workplace. Unfortunately many buildings are unhealthy buildings. Then, if there is some evil person in your life, they could also be poisoning you. Watch TV and you'll see the true life stories about this. It could be a person you don't know very well, but they have access to your food or something. Change your life dramatically like moving away from everyone, hopefully with a loving family in tow, and you could eliminate that possibility, hopefully. If your life quality is so bad, this could be quite difficult to do. But it could save you.In summary: find those super great doctors. Systematically change your life and see the results. Use good quality products and avoid exposure to many things. Good luck. Mahalo well done as you would have its has from the oven or I S so I think maybe she had it this morning and then
    Anonymous 42789 Replies Flag this Response
  • Antinuclear,Anti DNA Antibodies,Reumathoid Factor,CRP,CSF examination .I consider a Autoimune disease or a Neurological disease or both
    Anonymous 42789 Replies Flag this Response
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