Discussions By Condition: I cannot get a diagnosis.

At the end of my rope and can't get diagnosed

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Thats Nacho Cheese
  • February 19, 2009
  • 00:43 AM

I am a 37 year old female who has been perfectly healthy until April of 2007. I started getting edema in my ankles and feet. At one point I gained 13 pounds of fluid in three days. I have had every imaginable test done with no findings. The Swelling went away about October, but then returned again the next April, within 2 days of the year before. Again, in October the swelling stopped. During this time, if I physically exherted myself too much my legs would hurt and I would have to stop and rest. I thought it was because I was out of shape and had not been to the gym in years. I went back to the gym and started using the treadmill. I started with 20 minutes. The pain has gotten worse and with much less activity. I cannot walk more than 50 feet now without having to stop and rest, and cannot walk up more than one flight of stairs. I feel I must add I am not grossly overweight. I have an average body weight. The pain I get is in my thighs and up through my buttocks and lower back. I went to the vascular surgeon the other day and told him I thought I had Intermittent Claudication. He looked at me like I was crazy but is sending me for a vascular walking test. I am hoping that someone who has experienced something similar or who knows what I might have will read this and tell me and end this for me. I sleep in fear every night that something is very wrong and that by the time they find out what it is it will be too late. Please...PLEASE if you have any questions about tests I have had, think you might be able to help or know someone who can PLEASE help. I will take ANY advice at this point. I am tired of crying myself to sleep at night.

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  • I am a 37 year old female who has been perfectly healthy until April of 2007. I started getting edema in my ankles and feet. At one point I gained 13 pounds of fluid in three days. I have had every imaginable test done with no findings. The Swelling went away about October, but then returned again the next April, within 2 days of the year before. Again, in October the swelling stopped. During this time, if I physically exherted myself too much my legs would hurt and I would have to stop and rest. I thought it was because I was out of shape and had not been to the gym in years. I went back to the gym and started using the treadmill. I started with 20 minutes. The pain has gotten worse and with much less activity. I cannot walk more than 50 feet now without having to stop and rest, and cannot walk up more than one flight of stairs. I feel I must add I am not grossly overweight. I have an average body weight. The pain I get is in my thighs and up through my buttocks and lower back. I went to the vascular surgeon the other day and told him I thought I had Intermittent Claudication. He looked at me like I was crazy but is sending me for a vascular walking test. I am hoping that someone who has experienced something similar or who knows what I might have will read this and tell me and end this for me. I sleep in fear every night that something is very wrong and that by the time they find out what it is it will be too late. Please...PLEASE if you have any questions about tests I have had, think you might be able to help or know someone who can PLEASE help. I will take ANY advice at this point. I am tired of crying myself to sleep at night. Is your edema pitting?Is the pain in your inner thighs or outer? Is there equal pain on both sides? Have you had ultrasounds to rule out blood clots/DVT?Are you taking any meds? Are you on birth contol pills or an IUD?Do you have frequent urination? Any history of UTI's or incontenence?Have they ruled out reactive arthritis? DOM
    acuann 3080 Replies
    • February 19, 2009
    • 02:20 AM
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  • Yes, it was pitting edema. The pain is in the inner and outer thighs of both legs and it is equal pain. The only thing I can associate it with is if you are on a weight machine and have done 100 reps and cannot possibly do another one. Burning in the muscle with pain, but if I were standing in the middle of the street and a truck were coming I would not be able to lift my legs and move out of the way to save my life. I had a test done for Venous Insufficiency where they said there was no clotting, but they only looked at the area between my knee and groin.I am on no medication except an asprin a day after I read up on claudication. I have my tubes tied so no birth control. No frequent urination, no history of UTI's, but at one point I had incontinence issues during all of this but it cleared itself up with no action taken. I also have blood in my urine. They performed a cysto and found nothing. In addition to the formerly mentioned symptoms, I also have back pain, low and middle. Neck pain as well as migraine headaches. Also my legs, feet, arms and hands fall asleep very easily. Alot of mornings I wake up with both legs asleep. I really appreciate ANY help or advice you can give me.
    Thats Nacho Cheese 5 Replies
    • February 19, 2009
    • 03:34 AM
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  • what about your heart? have the listened to it well? if not, get an echo...if you haven't been an avid smoker, kind of rules out claudication by atherosclerosis.
    Anonymous 42789 Replies
    • February 19, 2009
    • 05:49 AM
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  • Have your docs checked out your heart, liver and kidney function? What is your salt intake/ over-all diet like? Many conditions of these organs can cause the pitting edema as well as the blood in your urine. Have you lost control of your bowels?The muscle pain.....is it on the front of your thighs or in the back (quads or hamstring area)? Does it go all the way to your toes? Which toes? This pain seems like sciatic pain to me...there are many causes and can be treated. The neck pain can cause migraines. You have very small muscles in the back of your head called suboccipitals. Many people hold stress here...if you can get them released, you should feel better. All in all, a massage therapist with experience in lymphatic drainage and sciatic disorders can help you. Because of the pitting edema, you must choose one carefully and may require your doctor's approval. I can't stress enough that the MT you find must be experience in this. You also need to rule out things like a bulging disk in the spine-- an MRI can do this. The good news is many of your symptoms can be treated effectively. Exactly what test have been run and what were the results? Push your docs on finding the reason for your edema and nerve pain. Don't discount the actual musculature (hypertrophy) of your muscles. They can clamp down on your sciatic nerve where passes through the obturator foramen in your rear end (entrapment by the piriformis muscle), but other medical issues need to be ruled out (heart, liver, kidneys, vertebral causes) before you decide on this for a cause. Best of luck to you--I feel for you and wish you well. You're right, this shouldn't be happening to you if you are 37 and not overweight. Dig deep, there is a cause.
    Harmonium 322 Replies
    • February 19, 2009
    • 04:34 PM
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  • Yes, heart liver and kidney function were amoung the first tests which they did. All normal. My salt intake is very minimal and I have never lost control of my bowels. The leg pain is mainly my thighs, buttocks and lower back when I walk more than 50 feet or so. It is my entire thigh, front back and side and does not travel down my legs. I had sciatica while pregnant and this is not what it is. I have had an MRI done of my back. It all looks pretty normal. That was about a year ago so I will talk to them about having another one. I can't possibly remember all of the tests run. Tons of blood work from Lymes disease to B12 to cancer screening. Kidneys and liver checked through blood. I had a whole cardiac workup as well as stress test done. They did say I had ventrical regurgitation, but that it was not to a degree to be concerned about. My blood pressure has always been fine. I had a vein study done on my legs. I went to an allergist. The vascular surgeon. I'm not quite sure who to go see next. All tests have come back normal or "within" normal limits. The swelling is gone as it always is from Oct - April. ONly the leg pain, back pain and headaches remain. I'm at a loss, but thank you for your help :)
    Thats Nacho Cheese 5 Replies
    • February 19, 2009
    • 06:16 PM
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  • Does the pain/swelling in the thighs, buttocks and lower back get better if you have your legs resting in a higher position? Do you ever have left flank pain? When it all started, was the pain and swelling equally bad in both legs? I mean in the very beginning of all this. Do you happen to have slim waist?
    Felsen 510 Replies
    • February 19, 2009
    • 08:47 PM
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  • I was an avid smoker up until recently, I also have high cholesterol and heart disease runs in my family. I have had an echo done already. As far as the pain and swelling in my legs...They are two seperate things. The swelling which is not present now was not accompanied by the pain. The pain is equal in both legs and the swelling is also when it happens. I took a diuretic for a while as well as support hose which only helped a small amount. I don't think my waist is thinner than normal. I'm not sure what my waist to hip ratio is or how to figure it out. I'm not sure what flank pain is.
    Thats Nacho Cheese 5 Replies
    • February 19, 2009
    • 11:28 PM
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  • Even though it doesn’t seems so, the swelling and the pain can be connected. I will explain, but first please answer the question below. The flank pain is in the back at the level of the kidneys. Does the pain/swelling in the thighs, buttocks and lower back get better if you have your legs resting in a higher position?
    Felsen 510 Replies
    • February 20, 2009
    • 00:28 AM
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  • I recently developed flank pain on both sides, but it was only recently, not the whole time, and it is not in conjunction with the leg pain or swelling. Elevating my legs did help with the edema, but with the pain as soon as a stop walking or exherting myself physically. So elevating them plays no part.
    Thats Nacho Cheese 5 Replies
    • February 20, 2009
    • 03:54 AM
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  • Do you live in an area that corresponds to first and last freeze of the year being the same as when your symptoms hit. What did the allergist say? Do you live on a farm?
    rad-skw 1605 Replies
    • February 20, 2009
    • 11:44 AM
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  • Do you live in an area that corresponds to first and last freeze of the year being the same as when your symptoms hit. What did the allergist say? Do you live on a farm? No, I tried keeping a log with my symptoms and what I ate as well as the weather and they don't match up. It might be the hottest most humid day of the year and I may get no swelling, but blow up like a balloon on the coolest day. Or I may eat some chips and deli meat one day and nothing happens. I do not live on a farm, and the allergist laughed at me. He said allergic reactions do not present themselves as swelling of the ankles and feet, that it would be more in my face, lips and/or throat.
    Thats Nacho Cheese 5 Replies
    • February 20, 2009
    • 11:57 AM
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  • There is a chance that your symptoms are due to venous disease. As I see it, something might be hindering your venous outflow in the inferior vena cava, possibly an undetected deep venous thrombosis (DVT). If the outflow problem is at the level of the renal veins, it would explain the blood in urine and flank pain. I think it’s a good idea that you continue with the aspirin until this is ruled out. A venous thrombosis is not always static. It can build up and be dissolved thus giving varying symptoms. The best way to examine this is by intravascular ultrasound (IVUS). A venography (phlebography) might discover it but doesn’t necessarily have to. A vascular evaluation of your legs will not show the condition. The best team in this field is Neglen & Raju at River Oaks Hospital in Jackson, Miss. They have the biggest experience of IVUS. As DVT is a serious condition and can result in embolism, it should be ruled out as soon as possible. I wish you the best of luck.
    Felsen 510 Replies
    • February 20, 2009
    • 03:09 PM
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