Discussions By Condition: I cannot get a diagnosis.

IN AGGONY...need help with diagnosis

Posted In: I cannot get a diagnosis. 23 Replies
  • Posted By: Anonymous
  • April 13, 2007
  • 08:23 PM

Ok I am a 31 yr white female and have sufferd from chronic pain since 2000.
My pain is Constant with intermittent episodes of increased pain. Increased pain lasting days or weeks at a time. Leg, foot, back and neck pain...with leg pain being the worst.

Leg pain has different sensations at times. Legs burn, throbbing, heavy feeling, also feel like a tournicate on legs, also feel swollen with out any seen swelling, and feel bruised with out seen bruising. Pain is progressively getting worse with each episode and my present bout has lasted 37 days so far...I have been having difficutly just walking for 18 of these days. I feel like my legs are dying.
About 2 weeks ago this type of pain seems to be also in my arms --about 3-5 inches above and below my elbows. Is this related to my legs???

OTHER HEALTH PROBLEMS...??if related???
diarrhea at least 2 to 3 times per week
sinus/allergy problems
frequent urination and strong urine odor
painful sex
chronic fatigue--I figured this is due to not sleeping because of pain

Dr.s cant seem to figure me out and my husband thinks Im crazy. I just cant live exausted and in pain anymore.
I have seen my FLy Dr, a podiatrist, Neurologist, Chiropractor, my GYN and massage therapist about this.

The neck MRI/MRA revealed a 50% blockage of my Left carotid artery. I have been suffering with leg pain for years and am now wondering if this could be a circulatory problem in my legs.
EMG of both legs normal
Thyroid panel, ANA, and sed rate normal
Lower lumbar MRI normal
Brain MRI & MRA normal
RLS, MS, lymes, and sciatica have all been ruled out

I have an appt with a new internal medicine doc. and a rehumatologist in May...What questions do I need to ask them or myself before my appt.'s???

Reply Flag this Discussion

23 Replies:

  • http://www.nature.com/ncprheum/journal/v2/n2/full/ncprheum0092.htmlThe article above is fairly easy to access: you have to register (free) for the journal "Nature" and this article is one that you do not have to pay for. Here is the abstract:Nature Clinical Practice Rheumatology (2006) 2, 99-106doi:10.1038/ncprheum0092 http://www.nature.com/images/icon_doi.gifReceived 30 June 2005 | Accepted 10 October 2005Mechanisms of Disease: atherosclerosis in autoimmune diseasesYaniv Sherer and Yehuda Shoenfeld* About the authorsCorrespondence *Department of Medicine 'B' and Center for Autoimmune Diseases, Sheba Medical Center, Tel Hashomer 52621, Israel Email shoenfel@post.tau.ac.ilSummaryAtherosclerosis is a pathologic process affecting blood vessels, which leads to the development of cardiovascular disease. The immune system is involved in atherogenesis and in the pathogenesis of atherosclerosis. Several autoimmune rheumatic conditions, including rheumatoid arthritis, systemic lupus erythematosus and antiphospholipid syndrome, are characterized by enhanced atherosclerosis and consequently higher cardiovascular morbidity and mortality rates. Enhanced atherosclerosis, in these diseases, can manifest as overt cardiovascular diseases, but could be detected at an earlier stage by identification of abnormal endothelial function and arterial intima–media thickening. Both classical and nonclassical risk factors are presumed to contribute to atherosclerosis progression in rheumatic diseases. As atherosclerosis can be considered to be an immune-mediated process, several experimental strategies exist for its immunomodulation, including induction of immune tolerance. In this article, we briefly review the contribution of autoimmune elements, such as autoreactive lymphocytes and autoantibodies to atherosclerosis and discuss the nature of atherosclerosis in autoimmune rheumatic diseases.The article is much harder to understand than the summary, but the obviously clear point, is that having that kind of serious blockage in your carotid artery this early in your life, is highly correlated with auto-immune diseases. Your rheumatologist ought to know this, but it might be useful to print out the article and bring it to your regular doctor. Perhaps there are some rheumatological blood tests your primary physician can order, so that you will have something for the rheumatologist to look at, rather than first starting blood tests in May. (Gosh, that must drive you nuts, having to wait that long.)And tell your husband that he is your husband, and it is his job to support you, not to assume you are full of it, just because the doctors are slow on the uptake. I've SO been there, done that. Took a few "real" diagnoses before my husband realized that if I'm complaining, there is actually something wrong. Might be the case for yours, too. But remind him that his good sense in marrying you was not wrong: you are just as honest now as when you got married. Sigh. I truly feel for you. Going undiagnosed, being in pain and discomfort, and not knowing what is causing these things, can drive a person absolutely out of her mind. But hang in there. You are zeroing in on this thing, by going to the rheumatologist. Don't give your husband too much grief before you get to the Rheum. Doc, but do see if your husband can accompany you to the doc, so he can hear the doctor say that you are actually sick, and it actually is causing you great physical distress. Then let your husband eat lots and lots of crow, and you can be the hero by patting him on the head, and being understanding. Give him the lecture later, about supporting his wife. :rolleyes:Regarding your pain, try anti-inflammatories. Pain meds hide pain. But anti-inflammatories (like Aleve, Ibuprofen) address the stuff that causes pain most often in auto-immune diseases. Ask your doctor how much you can take. The amounts listed on the directions of over the counter pills are not as high as what the doc can tell you to take. Write again, and tell me if the anti-inflammatories help. You might want to combine them with the pain killers, but try that after you take the anti-inflammatories by themselves, so you can do a kind of science experiment on yourself, to see what is really helping, and what is just going along for the ride. No use taking meds that aren't adding value.Best,Shula
    Anonymous 42789 Replies Flag this Response
  • My advise would probably sound too simple for the amount of symptoms you described but in addition to seeing a doctor I would try drinking at least 8 bottles of water a day and doing some mild excersises or thai chi everyday. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Shula...thank you so very much for your response...I so hope that the rehum doc can figure me out. I have tried anti-infl. meds--up to 12 ibprouffen's in 1 day....no help so far. Tylenol and advil too....they all tear up my stomach after a few days....and when my indegestion and nausea gets bad I stop taking them.I will keep you posted after my appt in a few weeks.Thanks for the web site...Im gonna check it out right now.Kristie
    Anonymous 42789 Replies Flag this Response
  • You are quite welcome. And, yes, regular anti-inflammatories are often not successful with auto-immune problems. My mother in law had to take steroidal anti-inflammatories (prescribed by a doctor, and come with a whole bunch of their own problems) when she would have big flare-ups.Do post when you know something, or if you have other thoughts or questions.Best of luck getting to the bottom of this!Shula
    Anonymous 42789 Replies Flag this Response
  • you are not crazy...go to www.ahummingbirdsguide.com see how many sx you have good luck
    mommy cat 1654 Replies Flag this Response
  • TO ANYONE LISTENING, Please Pray For Me...***I had another bad relapse on Wed. nite & it was so bad I could barely walk Thurs morn...I Almost didnt make it out of my bedroom that morn.......I am really scared that I will be in a wheel chair before any doctor figures out what is going on...Im to young and have 2 beautiful daughters that I need to raise...I really need a miracle right now.mommycat,thank you for your response...I checked out the web site & it said that if you are are tired all the time that you dont have ME....so I guess??? that would rule me out. although I sometimes think that my chronic fatigue is because I dont get good sleep because of my pain.
    Anonymous 42789 Replies Flag this Response
  • Your chronic fatigue is due to your lack of sleep...makes sense don't it? I have nightmares nightly and do not sleep well. sometimes I feel overwhelmingly exhaused and other times I'm tired but wired...I'm not trying to push this diagnosis on you, just asking you to take a closer look at symptoms...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I am so sorry you are going through this. It sounds more than a little scary. Between your pain and your fear, and your general exhaustion, I'm not the least surprised that you are having trouble getting up and out. But if you are having more trouble with the blockage in your circulatory system, that can also make you seriously tired. So I will pray for you, but I am also worried about you.Sure, it is a necessary step to get tot he rheumatologist, but if you are feeling like your strength/energy level is dropping noticably fast, you need to call your cardiologist and explain your symptoms.-------Oh, for pete's sake, I just re-read your post, and I can't believe I didn't pick up on this before...Yes, I think your thought that the leg pain, and then arm pain could be a circulatory system problem is likely correct. Are you presently on any blood thinners? Has anyone done an MRA of your legs? If the pain gets worse, you just might consider going to the emergency room, and seeing if you can get them to do one there. If you have the symptoms of some kind of thrombosis, that needs to be evaluated. They should also do a D-dimer test (blood test) which should be negative, but if it is positive, will help keep the doctors looking, and not calling the problem psychological. Also, while 95 percent of lupus patients will have a positive ANA test, that leaves 5 percent who don't. SOMEONE has to be that five percent. So don't let anyone rule that out conclusively, based on one test result. It should be repeated, but also, other tests need to be done as well.Please, if you feel short of breath, you start running a fever, the pain increases significantly, or if you just "feel" like something is very wrong, have someone take you to the ER. While it is possible that a lot of what you are going through is the combination of a bunch of not-terrible problems, along with pain and exhaustion, it is also possible that whatever caused your carotid artery to close up, is also causing other circulatory problems. Don't let the fact that people can't put a name to whatever is causing your misery, keep you from seeking immediate medical help. Even if it turns out you are wrong at that particular time, eventually the docs will figure this out, and then you will be vindicated.When is your next doctor's appointment? Please write back when you get the chance...I didn't see your post from yesterday until today. I am truly worried about you.Blessings and prayers,Shula
    Anonymous 42789 Replies Flag this Response
  • Shula,My fly dr never called me back about the 50% carotid blockage...its been over 3 wks, and im so frustrated with their office dropping the ball....so I sch an appt with a new Internal med dr. My appt is tomm...5-2-07 and I will blow his mind with my personal history along with my family history ...I see the rehum dr on 5-9.There are to many vascular problems in my Fly history & just thinking about my carotid problem is very very scary. Ever since the leg problems started I told my husband that if I had to Diag myself that I would say it was vascular, because I do ocular angiograms and my legs feel the way a diabetic bleeding eye looks. I have 5 family members with cereberal aneurysms..my mom has had surg for 5 aneurysms, my sister has 2 , I have 2 aunts with aneurysms and my grandmother passed away at 57 yrs after her 3rd aneurysm ruptured.Anyway, my MRI/MRA's have shown no aneurysms in my brain, but there is a national familial aneurysm study that will be getting a copy of the study to review it themselves.
    Anonymous 42789 Replies Flag this Response
  • I am VERY surprised the doctor didn't call you back about the carotid artery. That isn't OK.Write back after your appointment. I want to know if this new doctor can respond appropriately to your health and family background.Clearly, you need medical attention, big time, soon.Shula
    Anonymous 42789 Replies Flag this Response
  • CHULA,ok, I saw the new dr yest and he said that more than likely the mra was wrong about the carotid but because of the seriousness of a diagnosis like this he wants to have a CT angiogram done.something new has popped up in the last couple of days with me and is really bothering me...My shoulder, arm, back, hip and leg only on my left side has been having needle like stinging and numbness...could this mean anything or be related to the rest of my overall pain?Thank you again for being so concerned and for helping with adviseKristie
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Kristie...numbness, tingling...along with your other sx...PLEASE look at MYALGIC ENCEPHALOMYELITIS and it's sx's yours are all there...google the name, look at symptoms...know that you do not have to have every sx to have ME, good luck...mommy cat
    Anonymous 42789 Replies Flag this Response
  • Hi Kristie,My apologies for taking so long to get back to you. Sometimes the program doesn't send me an email letting me know that there is another post for more than a day, and then I wasn't on email all day today. So I lost two days.I am surprised that your new doctor has decided that the carotid artery isn't really a problem. Just because it is "unlikely" that isn't enough reason to think it isn't true. Does he have any other reason to discount the results of that test?Meanwhile, I am glad he is sending you in for another test, to see. However, if you are really feeling worse, if the numbness or pain becomes excruciating, or if you begin to lose function on that side, just go straight to the emergency room. And when you are there, tell them about your blocked carotid artery. DON'T tell them that your doctor doubts the results of that test. Also go to the ER if you just feel scared, and like things are going really wrong, even if you can't quite place what has happened that changed what you are feeling.Your doctors might not be taking you deeply seriously, but I am. There is nothing in your description of your history to suggest that it is reasonable to take your complaints lightly. For the life of me, I can't figure out why your doctors keep taking such a slow, "it will be alright" kind of pace. Write back, and let me know where things stand.ShulaPS Hispanic people often end up calling me Chula, but it really is Shula. :)
    Anonymous 42789 Replies Flag this Response
  • ever heard of aspirin every day? taking just one 81mg aspirin or "baby aspirin" a day thins the blood and increase your blood circulation, which sounds to me like the problem you are having...
    Anonymous 42789 Replies Flag this Response
  • Shula, I will get back with you as soon as I get back from the rehum dr's office. Oh yeah...Its 5-7 & I just saw my last reply to you today...the stinging stopped yesterday, but my left arm still feels funny esp if I raise it???something new to add to my symptoms.Yippie...here is my yahoo messenger Id if you want to cut out the 3 day wait for reply: lilomekgbUn registered --My drs dont want me taking any blood thinners because I have 5 known family members with cereberal aneurysms..and the risk of having an aneurysm and being on a blood thinner is not a good combination. My MRI/MRA's have ruled out aneurysms the dr's still dont want to take that chance. I was taking ASA before I found out about everyone having aneurysms and honestly it didnt help any more than advil or tylenol...When the pain is really bad I take tylenol only until the nausea gets too bad then I stop.
    Anonymous 42789 Replies Flag this Response
  • To Unregistered, and anyone else:Telling someone "take this medication" is DANGEROUS! You don't have enough information. People on these lists don't generally have "easy" problems--if they did, they wouldn't be on here.Kristie,I'm glad you answered what you did, to that "advice." Yeesh.Shula
    Anonymous 42789 Replies Flag this Response
  • shula,the new dr has ordered a ct angiogram to confirm or rule out the carotid blockage...he said that an MRA can mis diagnose these if the patient moves and because of my age if it highly unlikely that I have this...Any way, thank you for your response about the aspirin..My obgyn wanted to put me on Birth control and my mom told me that I cant so I called him back and we cant even take hormones because of the aneurysm history. My appt is this after noon so I will let you know how it goes
    Anonymous 42789 Replies Flag this Response
  • I would love to hear that the MRA was wrong. That would be awesome. I just find that it seems more likely that it isn't wrong. Looking forward to hearing about your appointment.Shula
    Anonymous 42789 Replies Flag this Response
  • Shula,I have never been to a dr. that has been so thorugh with the exam. He spent almost 2 hours with me. He said that I have...1. bercitis in both hips2. possible type of arthritis that affects the sping--ordered X-rays of my spine 3. possibly a inched nerve or sciatica causing the leg pain and wants to repeat the MRI done 2 yrs ago of my lumbar.4. carpal tunnel Lt >Rt5. He didnt say much about the carotid artery but did listen to my neck and said to keep my appt for the ct angiogram6. He put me on mobic and ultram7. He ordered new blood work--only was hasn't been done in last 6 mos.He wants to see me again in a month to re-eval things.I was so satisfied with his exam, but in pain from him poking and prodding around. So Im really happy that he at least gave me some kind of answer instead of just scratching his head and sending me a bill with no answers like everyone else I have seen.Thank you so much for being there for me..My husband is happy to hear that I finally got some answers too....God bless and good nite
    Anonymous 42789 Replies Flag this Response
  • Hi Kristie,I am so glad you have found a doctor who is really paying attention to you, starting to get some answers for you, and treating your symptoms while working out how to proceed. Just awesome. And, yes, in order to do a really good exam, doctors often leave us feeling more pain than when we came in through the door. Nature of the beast, I guess. But he was able to figure stuff out, and that makes the pain worth it, I think, anyway.Keep me posted on the various follow-up tests. And if anything seems to get obviously worse before your next appointment with this new doc, call and tell him.Glad things are moving in the right direction.Shula
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.