Discussions By Condition: I cannot get a diagnosis.

Gone on like this for years, am not getting any answers

Posted In: I cannot get a diagnosis. 30 Replies
  • Posted By: ratsabout
  • February 5, 2009
  • 09:42 PM

Hi,

Since I was a very young child, I have suffered from pains in my joints. It started off as mainly in my legs. My parents tell me I used to wake up screaming. For years I was told by a doctor that is was "growing pains" (which is something of a myth, I am now told). I am also 24 now, so really doubt it would be that. One physician suggest hyper-mobility, but I have lost a lot of my flexibility in recent years. No one really seems to have a clue. I have flares, and can feel awful for weeks then it just goes away, but for the past few months it's stuck.

In January 2007, I was sent to a rheumatologist. I was having a good spell, and in some ways (for once) wish I had been having a "flare" because it may have been easier to find something. They could not find anything conclusive, but said it may be a different story in 10 years time (great, only another 8 years to wait). There is a history of autoimmune diseases in my family- the ones I know of in the family are: Rheumatoid Arthritis, Systematic Lupus Erythematosus, Myasthenia Gravis and Churg-Strauss Syndrome.

My symptoms are: joint pain in my shoulders, hips, elbows, wrists, fingers, knees, ankles and now toes. It feels like they are burning sometimes. I get pain in my long bones (my shin and thigh bone mainly), I feel like I have the flu for most of the year, I feel off my food a lot, I get IBS a long (again, something they had trouble diagnosing and I was giving medicine for gastritis instead). I feel like I have fever, and am hot to the touch. My joints feel hot to the touch too, and I've started putting ice packs on them to cool them down. My fingers look really swollen and red sometimes.

I can't find any joint deformities. I've been on anti-depressents, which did not alleviate any of my pain. I don't find painkillers help me now, even very strong anti-inflammatories don't seem to work (but this is over the counter stuff, I've never been given a prescription). It hurts when I walk.

The thing that is upsetting is that when I go to see my GP, they plain don't believe me. I've been sent to physiotherapy twice to no avail. They've not done blood tests (the last one I had was in 2007). It has been going on for about 2 decades now and has gotten quite unbearable as it's more frequent and has spread. I don't know what to do. :(

Any insight to what it might be and how I should harrass the docs (in the nicest possible way) would be really appreciated!

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30 Replies:

  • I have noticed that the joint on my foot at my big toe has changed, on both feet. The joint is very raised and red looking. I've had people look at it (including a former nurse I know) and it's not a bunyon (sp?). It does seem to be the bone. What other conditions can cause deformities in bones?Also, I recently became a blood donor- I thought, "what the heck" as I have not been put on medication and don't have a conclusive diagnosis. If I had underlying symptoms of RA, etc. could giving blood have aggrevated it?I have a GP appointment on 2nd March, hopefully he will re-refer me to the rheumatologist.
    ratsabout 11 Replies
    • February 16, 2009
    • 06:34 PM
    • 0
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  • The painful joints, especially in the toes, might be related to gout. Is it especially bad after alcohol or rich (buttery) foods? This flares up and goes away, and also has been called gouty arthritis. Ask your dr to check your uric acid level.
    Anonymous 42789 Replies
    • February 16, 2009
    • 06:59 PM
    • 0
    Flag this Response
  • Hi..sounds extremely frustrating, and on a small scale I can relate. Do you know what your doctor tested for?....of course, gout would be first in mind, but that would be fairly easy to eliminate from the list of possibilities. Curious if your doctor tested you for liver, kidney and pancreas enzymes? sometimes they can guide to a possible lead. Do you have the results of any of your tests? It might be a good idea in the future if you could get a copy for your own research etc. You mentioned you have IBS...do you possibly have symptoms that could be ulcerative colitis or crohn's disease? Could you have celiac disease? I guess to mean..have you seen a gastroenterologist? Have you had allergy testing done for foods or airborne particles?Have you been tested for West Nile Virus? Have you gone through the list of possibilities of your symptoms on Wrong Diagnosis ? I have/had many symptoms that have frustrated me forever. I've since been diagnosed with BPPV, ulcerative colitis, asthma, UC-related primary sclerosing cholangitis (or/and primary biliary cirrhosis), possible sjogren's based on symptoms, heart murmur, geographic tongue and still have a host of other stuff, but I'm now middle aged..lol! that in itself is a symptom :eek:. One doctor, however said it right to me many years ago (and it gave me much relief mentally)....he said there is a growing population like me in which many doctors just don't know how to classify or how to treat or even know how to diagnose. His frustration at least gave me hope believe it or not. I hope you continue to do your own research, make lists and offer some possible suggestions as to what the doctors can check for. Your family history alone should help a lot...In saying that, sometimes when we're in early stages of "something"...tests are rarely definitive. Keep us posted as to any leads. k
    kwinzy 5 Replies
    • February 16, 2009
    • 07:24 PM
    • 0
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  • I have some of those symtoms. Have you talked to your doctor about Fibromyalgia and/or Chronic Fatigue. Also, I take Amitriptyline that seems to help. A lot of doctors do not like to diagnose you with that so it is difficult to find a good doctor. Good LuckHi,Since I was a very young child, I have suffered from pains in my joints. It started off as mainly in my legs. My parents tell me I used to wake up screaming. For years I was told by a doctor that is was "growing pains" (which is something of a myth, I am now told). I am also 24 now, so really doubt it would be that. One physician suggest hyper-mobility, but I have lost a lot of my flexibility in recent years. No one really seems to have a clue. I have flares, and can feel awful for weeks then it just goes away, but for the past few months it's stuck. In January 2007, I was sent to a rheumatologist. I was having a good spell, and in some ways (for once) wish I had been having a "flare" because it may have been easier to find something. They could not find anything conclusive, but said it may be a different story in 10 years time (great, only another 8 years to wait). There is a history of autoimmune diseases in my family- the ones I know of in the family are: Rheumatoid Arthritis, Systematic Lupus Erythematosus, Myasthenia Gravis and Churg-Strauss Syndrome. My symptoms are: joint pain in my shoulders, hips, elbows, wrists, fingers, knees, ankles and now toes. It feels like they are burning sometimes. I get pain in my long bones (my shin and thigh bone mainly), I feel like I have the flu for most of the year, I feel off my food a lot, I get IBS a long (again, something they had trouble diagnosing and I was giving medicine for gastritis instead). I feel like I have fever, and am hot to the touch. My joints feel hot to the touch too, and I've started putting ice packs on them to cool them down. My fingers look really swollen and red sometimes. I can't find any joint deformities. I've been on anti-depressents, which did not alleviate any of my pain. I don't find painkillers help me now, even very strong anti-inflammatories don't seem to work (but this is over the counter stuff, I've never been given a prescription). It hurts when I walk.The thing that is upsetting is that when I go to see my GP, they plain don't believe me. I've been sent to physiotherapy twice to no avail. They've not done blood tests (the last one I had was in 2007). It has been going on for about 2 decades now and has gotten quite unbearable as it's more frequent and has spread. I don't know what to do. :(Any insight to what it might be and how I should harrass the docs (in the nicest possible way) would be really appreciated!
    Anonymous 42789 Replies
    • February 16, 2009
    • 09:02 PM
    • 0
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  • I have noticed that the joint on my foot at my big toe has changed, on both feet. The joint is very raised and red looking. I've had people look at it (including a former nurse I know) and it's not a bunyon (sp?). It does seem to be the bone. What other conditions can cause deformities in bones?I think this sounds like arthritis of the big toe (Hallux Rigidus). What feels like a 'bone' on the top of the joint can be an accompanying bone spur. You may also have bursitis at this joint. Your doctor should be able to diagnose this easily. A podiatrist can really help. I don't know about the other....but I was told as a child I had 'growing pains' too....yet at 31 there are very prevalent (although not to the degree you mention for you). Please let us know if they find anything out on this for you! Best wishes :)
    Harmonium 322 Replies
    • February 16, 2009
    • 10:26 PM
    • 0
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  • Hello all,Thank you so much for all your replies.I will ask the doctor about the things you have suggested, but in my experience I've found doctors don't like it when you make suggestions :( I went to see a rheumatologist, but they didn't tell me any of the results, just that they hadn't found RA, SLE, or myasthenia gravis (which all run in my family, as I mentioned). I've read conflicting articles about RA, such as some people think it's a syndrome rather than 1 disease, and some people with it may not show positive for rheumatoid factor :confused: I read a similar claim that some people with SLE will not show up positive for ANAs. Has anyone else ever come across this? I'll try to find the site I read that on.The symptom checkers I've used here and on other sites suggest RA, fibromyalgia, avascular necrosis (which I think is a bit unlikely). One very unhelpful bit of advice I got from a previous doctor was that something like 2% of people will suffer from rheumatic problems but never get a diagnosis and just to take painkillers, which in my case hasn't work. Nor have anti- depressants or herbal rememedies, etc.In relation to the gout, I don't drink much at all nor do I eat many rich foods, but I have these pains most of the time. And it's only recently the joint at my big toe started looking, well, bigger. And redder.Thank you again for all your help, I will make a note of things to ask the doctor based on your responses and maybe try to get an appointment for before the 2nd March.
    ratsabout 11 Replies
    • February 16, 2009
    • 11:29 PM
    • 0
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  • You definitely need more blood work done, ANA, Lyme (if applicable), and others. Find a doctor who will listen to you. Make sure they test your D levels, as this can cause joint pain and is a simple blood test. I also recommend finding a CAM (Complimentary and Alternative Medicine) practitioner to help you. Often CAM can help when allopathic medicine cannot. Please visit www.nih.gov and click on the info about CAM. I am a Doctor of Oriental Medicine and have seen patients with similarly undiagosed ailments. Acupuncture can really help! www.nccaom.org for more info on the benefits of acupuncture and Oriental Medicine. Has reactive arthritis been ruled out? Do you get rashes on your skin? Best wishesDOM
    acuann 3080 Replies
    • February 16, 2009
    • 11:50 PM
    • 0
    Flag this Response
  • Hello all,Thank you so much for your suggestions. I am going to make a not of them and run these ideas past the doctor. The rheumatologist didn't give me any of the results, they couldn't find lupus, but as it has been pointed out, it's hard to diagnose in early stages.Can anyone confirm this- I have read that some people can have rheumatoid arthritis without being positive for rheumatoid factor? And people with lupus can test negative for ANA's? Has anyone else heard this. I will keep pushing the doctor, because even though they are having a hard time pinning down what's up, I'd rather they did check ups with me instead of just forgetting about me :( I just want them to find out what is up so it can get treated and I can get on with my life, as I'm sure many of you feel/ have felt.Thank you again for your responses, I don't like the idea of other people suffering, but in a round about way, I feel a little more at peace when I talk to people who understand how hard getting a diagnosis is.
    ratsabout 11 Replies
    • February 17, 2009
    • 10:47 PM
    • 0
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  • Sounds like a type of arthritis probably rheumatoid arthritis.
    WildMonkey 7 Replies
    • February 18, 2009
    • 02:57 AM
    • 0
    Flag this Response
  • I had my GP appointment today. He was very nice and understanding, and feels that 2 years is good enough time for me to get a rheumatology follow up, so I am being re-referred. I am getting my hands and feet x-rayed tomorrow, as well as blood tests. He has said that even if I come back negative for an inflammatory arthritis, they will still investigate as something is not right. I'm still a little scared of the outcome but at the same time I am so relieved and feel like a big weight has been lifted because he took me seriously and understood there is a problem.:)
    ratsabout 11 Replies Flag this Response
  • On 3rd March, I had x-rays of my feet and hands, and also blood tests. I phoned my doctors practice today (9th March) and what's strange is only half the results for both have come back.The part of the x-ray which came back is normal (they didn't say if it was hands or feet though) and they are still waiting for the other half. The blood that came back was normal, but again they are still waiting for the other half.Does this indicate anything if only have the results have been sent back and I have to wait 'til the end of the week to get the rest?
    ratsabout 11 Replies Flag this Response
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  • You have what is known as polyarthritis.Have you taken your temperature to see if you have a fever?I researched this and found a mention of false negative ANA,though it 's very rare.Next,have you had any heart,lung,or kidney problems?Too,I strongly suggest that you try a prescription anti-inflammatory drug.With your family history you have an autoimmune disease until proven otherwise.You could try Plaquenil if the Rx NSAID doesn't work.Something has to be done for you!
    richard wayne2b 1232 Replies Flag this Response
  • in 1967 I had a similar problem to yours...it was deemed to be rheumatic fever.
    ckanaan 33 Replies Flag this Response
  • hi i hope this is some help to u.....for years i went through what seems like very similar symptoms and i was diagnosed with fibromyalgia....my mom has rsd which is another illness u might want to look at hope u find some answersSince I was a very young child, I have suffered from pains in my joints. It started off as mainly in my legs. My parents tell me I used to wake up screaming. For years I was told by a doctor that is was "growing pains" (which is something of a myth, I am now told). I am also 24 now, so really doubt it would be that. One physician suggest hyper-mobility, but I have lost a lot of my flexibility in recent years. No one really seems to have a clue. I have flares, and can feel awful for weeks then it just goes away, but for the past few months it's stuck. In January 2007, I was sent to a rheumatologist. I was having a good spell, and in some ways (for once) wish I had been having a "flare" because it may have been easier to find something. They could not find anything conclusive, but said it may be a different story in 10 years time (great, only another 8 years to wait). There is a history of autoimmune diseases in my family- the ones I know of in the family are: Rheumatoid Arthritis, Systematic Lupus Erythematosus, Myasthenia Gravis and Churg-Strauss Syndrome. My symptoms are: joint pain in my shoulders, hips, elbows, wrists, fingers, knees, ankles and now toes. It feels like they are burning sometimes. I get pain in my long bones (my shin and thigh bone mainly), I feel like I have the flu for most of the year, I feel off my food a lot, I get IBS a long (again, something they had trouble diagnosing and I was giving medicine for gastritis instead). I feel like I have fever, and am hot to the touch. My joints feel hot to the touch too, and I've started putting ice packs on them to cool them down. My fingers look really swollen and red sometimes. I can't find any joint deformities. I've been on anti-depressents, which did not alleviate any of my pain. I don't find painkillers help me now, even very strong anti-inflammatories don't seem to work (but this is over the counter stuff, I've never been given a prescription). It hurts when I walk.The thing that is upsetting is that when I go to see my GP, they plain don't believe me. I've been sent to physiotherapy twice to no avail. They've not done blood tests (the last one I had was in 2007). It has been going on for about 2 decades now and has gotten quite unbearable as it's more frequent and has spread. I don't know what to do. :(Any insight to what it might be and how I should harrass the docs (in the nicest possible way) would be really appreciated!
    Anonymous 42789 Replies Flag this Response
  • Thank you for that information richard_wayne2b. I have an update from my GP, and if you could shed any light on it I would be very grateful-Basically, my ANA, rheumatoid factor, etc. tests came back "fine", which I assume means I tested negative for them, but I noticed you pointed out that you can present as negative for these but still have them. I haven't been told about any heart, lung or kidney conditions, I did have a heart "murmur" until I was 20 but have been told they are quite common.My x-rays for my hands and feet also came back normal. This is ofcourse good, but puzzling as I have honestly lost some of the span in my hand in little over a year (my thumb and little finger could be held in a straight line exactly opposite each other, now I can't open my fingers that far and it hurts me to write with a pen).From what the doctor has said, after I've been to rheumatology again, I may well get lumped under "fibromyalgia", which has been suggested to me before, but they don't seem to know what causes that and most of the treatment from what I can see is anti-depressants, which I am not happy about as I have been on some in the past, they didn't help with anxiety/depression let alone joint pain, and just had poor side affects.Something else that was mentioned was when I was a teenager (13) I was told I had hypermobility. As with most children, I was more supple then than I am now, but I was never THAT mobile! I could never put my arm behind my head or do a splits,etc. And it doesn't really explain loss of mobility and other symptoms.Anyone have any ideas relating to this? It seems to be a never ending battle, getting diagnosed.:confused:
    ratsabout 11 Replies Flag this Response
  • Thank you for that information richard_wayne2b. I have an update from my GP, and if you could shed any light on it I would be very grateful- Basically, my ANA, rheumatoid factor, etc. tests came back "fine", which I assume means I tested negative for them, but I noticed you pointed out that you can present as negative for these but still have them. I haven't been told about any heart, lung or kidney conditions, I did have a heart "murmur" until I was 20 but have been told they are quite common. My x-rays for my hands and feet also came back normal. This is ofcourse good, but puzzling as I have honestly lost some of the span in my hand in little over a year (my thumb and little finger could be held in a straight line exactly opposite each other, now I can't open my fingers that far and it hurts me to write with a pen). From what the doctor has said, after I've been to rheumatology again, I may well get lumped under "fibromyalgia", which has been suggested to me before, but they don't seem to know what causes that and most of the treatment from what I can see is anti-depressants, which I am not happy about as I have been on some in the past, they didn't help with anxiety/depression let alone joint pain, and just had poor side affects. Something else that was mentioned was when I was a teenager (13) I was told I had hypermobility. As with most children, I was more supple then than I am now, but I was never THAT mobile! I could never put my arm behind my head or do a splits,etc. And it doesn't really explain loss of mobility and other symptoms. Anyone have any ideas relating to this? It seems to be a never ending battle, getting diagnosed.:confused: Have you tried alternative treatments for your condition?Have they tested your B12 or vitamin D levels? DOM
    acuann 3080 Replies Flag this Response
  • I understand exactly what you are going through. I also have fibromyalgia and sero-negative rheumatoid arthritis (and all the many associated problems that come with them) I spent nearly 2o years trying to find doctors who knew what was wrong with me. I have been on vast amounts of medications to treat one thing or another which never really worked. I find the best thing for my RA is a low dose of prednisolone. I have tried going off it several times only to end up in agony so I no longer listen to well meaning people who suggest I wean myself off it. The usual prescription anti-inflammatories and Plaquenil had no effect and were a waste of time and money. The IBS and flu-like fatigue responds best to dietry changes. I tend to believe IBS is caused by food intolerances. I have multiple food allergies and intolerances and found that by altering my diet the IBS improves and after a while all the other problems have significantly improved. The most common offenders for people seem to be dairy, gluten and sugar. I'm not suggesting this is your absolute answer but it may be a help. When you have food intolerances the offending foods can be poison to your body and this can manifest in so many ways. You will probably never get a simple diagnosis from doctors as more than likely you have a combination of problems. You are right about RA not always showing positive for rhuematoid factor. It is called sero-negative RA and it makes diagnosing your problem difficult. I was diagnosed with everthing from polyarthritis to rhuematism before I went to my current Rheumatologist...for all we know it may be a new form of arthritis that hasn't been labelled yet (and for one they don't have a test for yet). Also have you had your vitamin D checked? They have new theories coming out about that now too. Large doses of fish oil may also benefit your joint pain. May I also suggest visiting a naturopath or iridologist...underlying problems may be causing your body to react. I hope you can find some relief with some of these suggestions. They are the things that have helped me.
    Anonymous 42789 Replies Flag this Response
  • Today, I had my second rheumatology appointment, after a two year break.We looked at my x-rays. I was told in my hand there should be a space between a couple of bones and there wasn't, which can be down to wear and tear, but the doc has decided this is down to the x-ray machine. The diagnosis for now is still Hypermobility Syndrome and I have pain management for it. I didn't really get a chance to finish everything I was saying to the guy. I managed to mention IBS, but on 4 occasions tried to mention urinary problems I have but didn't manage to finish my sentance. I didn't bother arguing the possibility that the tests could be false negative result (which does happen in up to 20% of cases with things lik RA, atleast that's what I've read), but I worry about seeming pushy and some of them just don't like it if you tell them something.For now, I don't know if I can really be bothered pursuing this anymore as it's getting on for 2 decades of complaining about pain which is getting worse and worse, and generally feeling ill (like I have flu virtually all year round), so I will accept this as the diagnosis and just bob along, and if I get any worse I shall contact them again.Unfortunately, my GP who has been really sympathetic, is retiring so hopefully I won't end up back at square one if my symptoms get worse. And with how I have been the past year or so, I have a feeling this may happen.:confused:
    ratsabout 11 Replies Flag this Response
  • Typical RA symptoms are swelling, pain, redness and warmth in and around joints, morning stiffness that lasts for longer than an hour, fatigue, weight loss, visible deformed hands (especially fingers) and restricted movement are all early signs. But there are over 100 different types of arthritis and rheumatic-related disorders.Your case is puzzling, but I doubt whether it's RA. Possible culprits could be Gouty Flexor Tenosynovitis (where crystals may be absent in synoval fluid), Molybdenum Gout, Soft Tissue Rheumatic Syndrome (which comes and goes on its own and is often mistaken for arthritis) or even Busitis to name but a few. I wouldn't rule out Infective Tenosynovitis either as this condition can last years if not treated with anti biotics.Do you consume unusually large ammounts of alcohol? Gout is often confused with other arthritic disorders.
    NeverGiveUpBoy 26 Replies Flag this Response
  • I don't drink, alcohol doesn't agree with me. On the occasions I do I limit myself to a unit, but it still upsets my stomach:(
    ratsabout 11 Replies Flag this Response
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