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Continuous pain in left leg

Posted In: Medical Stories 10 Replies
  • Posted By: MTNUTHOUSE
  • March 9, 2009
  • 04:17 PM

I have been experiencing a number of symptoms in my left leg for about five years now. I have seen three neurologists, two family doctors, two bone specialists, and a chiropractor. I have Multiple Sclerosis (MS) so this is where it gets frustrating. The two bone specialists and one family doctor say it is due to my MS. The deciding factor here is that the bones and muscle are good with some arthritis and muscle weakness. They say I might have a lesion in my lumbar spine causing this. The three neurologists say it's not due to my MS. The deciding factor here is that the symptoms are unilateral and not bi-lateral and claim that a lesion would not be found in the lumbar spine because the spinal cord stops before your lumbar spine starts. They also state that although I have four new lesions in the past two years in my brain that all lesions at this time are inactive. The other two are undecided. My chiropractor says it's crazy that I should have to live in pain. My new family doctor is willing to look for an answer but admits it's way out off his league. The pain originally started in my left knee and hip. Leg would swell so bad it felt like it was going to bend the wrong way. It now starts in my left foot on the outside and bottom,( which I was told MRI showed a lot of inflammation) travels up the back of my leg through my hip and stops somewhere around my left kidney. My leg swells without warning at all times of the day. I sometimes am awakened in the middle of the night because the swelling cases me so much pain. My calf is rock hard and my hamstring feels really tight. The majority of the time when I walk I don't bend my left leg. Ironically I have no back pain. Have had MRI'S on my foot, hip, and lumbar back. My leg hurts constantly with pain, numbness, swelling, and a sensation problem of hot feels cold -cold feels hot and sensitivity issues. Have had x-rays on entire leg. Have had numerous blood tests. Had an arterial scan to check for blood clots. All tests come back negative or with minimal findings but not enough to explain the pain. Medication does not seem to help and the one that did left me incapacitate. I always hear there is a lot of swelling and it's obvious your in pain. They run a test and when they don't get any definite answer they give up or recommend me to someone else. Then the doctors argue about why that doctors is wrong and why his findings have no supporting evidence to his diagnosis. Really frustrated. Would greatly appreciate any input.

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  • 1. the information you have provided is very incomplete. please answer the following (brieflY) age/sex/your current meds/ at what age your MS was diagnosed/ did you have nerve biopsy done/did you have EMG and nerve conduction study done/ do you feel that your left calf is atrophic as comapred to right (smaller)/can you describe where the lesions are in your brain (if you dont know thats ok)/ do you think the symptoms are worsening even now or they have been same for some time/ do you have vision disturbance or bladder disturbance (like urgency)? when you flex your neck do you feel electric sensation on the back and thighs? 2. your symptoms are very suggestive of peripheral neuropathy although band like sansation on calf can also be 'characteristic' of MS. I will be surprised that you have no symptoms in other leg if indeed it was due to MS. the blood tests you mentioned, did they include specific antibody tests?I have been experiencing a number of symptoms in my left leg for about five years now. I have seen three neurologists, two family doctors, two bone specialists, and a chiropractor. I have Multiple Sclerosis (MS) so this is where it gets frustrating. The two bone specialists and one family doctor say it is due to my MS. The deciding factor here is that the bones and muscle are good with some arthritis and muscle weakness. They say I might have a lesion in my lumbar spine causing this. The three neurologists say it's not due to my MS. The deciding factor here is that the symptoms are unilateral and not bi-lateral and claim that a lesion would not be found in the lumbar spine because the spinal cord stops before your lumbar spine starts. They also state that although I have four new lesions in the past two years in my brain that all lesions at this time are inactive. The other two are undecided. My chiropractor says it's crazy that I should have to live in pain. My new family doctor is willing to look for an answer but admits it's way out off his league. The pain originally started in my left knee and hip. Leg would swell so bad it felt like it was going to bend the wrong way. It now starts in my left foot on the outside and bottom,( which I was told MRI showed a lot of inflammation) travels up the back of my leg through my hip and stops somewhere around my left kidney. My leg swells without warning at all times of the day. I sometimes am awakened in the middle of the night because the swelling cases me so much pain. My calf is rock hard and my hamstring feels really tight. The majority of the time when I walk I don't bend my left leg. Ironically I have no back pain. Have had MRI'S on my foot, hip, and lumbar back. My leg hurts constantly with pain, numbness, swelling, and a sensation problem of hot feels cold -cold feels hot and sensitivity issues. Have had x-rays on entire leg. Have had numerous blood tests. Had an arterial scan to check for blood clots. All tests come back negative or with minimal findings but not enough to explain the pain. Medication does not seem to help and the one that did left me incapacitate. I always hear there is a lot of swelling and it's obvious your in pain. They run a test and when they don't get any definite answer they give up or recommend me to someone else. Then the doctors argue about why that doctors is wrong and why his findings have no supporting evidence to his diagnosis. Really frustrated. Would greatly appreciate any input.
    Anonymous 42,789 Replies Flag this Response
  • If you have a complete examination and your doctors can’t find any other cause for your symptoms, then here is a suggestion. It might be a vascular problem. There is a condition called May-Thurner syndrome. It is when the right iliac artery compresses the left iliac vein against the spine. This causes the blood to congest in the left leg because it can not normally pass the compression on its way back to the heart. It does not necessarily results in the pain at the compression site (if it does it gives a lower back pain); most often it causes pain or swelling or both in the left leg and/or buttock. (Sometimes the anatomical structures are different and this can happen on the right side). If you have a compression like this, after a while your circulatory system is trying to develop alternative veins. They are called collateral veins. Most often there are transpelvis collaterals (horizontal ones from left to right in pelvis), but some patients can develop them near the spine or even inside it. Then it can give pressure on nerves and give numbness and tingling sensation in legs. Another typical symptom is ambulating pain, the pain moves around depending on where the pressure is high at the moment. Also, the pain subsides when you lay down. This condition is vastly underdiagnosed. It is impossible to discover with ultrasound and even difficult to discover with venography (phlebography). It is definitely not discoverd through the evaluation of the arteries. The only certain way to discover it is by means of intravascular ultrasound (IVUS) where the probe is inside the vein. The best research has been done by Neglén and Raju in Jackson, Miss. The treatment is to put a stent inside the vein at the site of the compression. The typical patient is a young – middle-aged woman, previously healthy where the doctors have not found other explanation for the symptoms. If left untreated, there is a big risk of thrombosis either at the compression site in the left common iliac vein or in the left leg. Could this possibly help? The best of luck! :)
    Felsen 510 Replies Flag this Response
  • 1. the information you have provided is very incomplete. please answer the following (briefly) age/sex/your current meds/ at what age your MS was diagnosed/ did you have nerve biopsy done/did you have EMG and nerve conduction study done/ do you feel that your left calf is atrophic as compared to right (smaller)/can you describe where the lesions are in your brain (if you don't know thats OK)/ do you think the symptoms are worsening even now or they have been same for some time/ do you have vision disturbance or bladder disturbance (like urgency)? when you flex your neck do you feel electric sensation on the back and thighs? 2. your symptoms are very suggestive of peripheral neuropathy although band like sensation on calf can also be 'characteristic' of MS. I will be surprised that you have no symptoms in other leg if indeed it was due to MS. the blood tests you mentioned, did they include specific antibody tests? I would like to first thank you for your interest in my problem. I will try to answer all your questions to the best of my knowledge. I'm a 35 year old male. I was diagnosed with MS in August of 2002 at the age of 28. It started out I lost all feeling in my left side and the motor abilities in my right arm. Now I say feeling my doctors call it numbness. I was sent to emergency room by my family doctor who thought I might of had a stroke. All test came back fine, no stroke. Had an EMG two days later and found that left side was very week and that the nerves had a delayed response and were jumping twice. I still to this day have sporadic feeling in my left side. I'll give you an example of what I'm talking about. The first couple of minutes in a shower feels like someone is beating me with a wire brush. Then I go numb and don't feel it. Rain is the same way. I can pick up a hot cup of any beverage and it feels cold. I touch ice it feels hot like fire. This only happens on my left side, not on my right. I don't believe I had any nerve biopsy done. My left calf is bigger than my right. I have around fifteen lesions in my brain. I don't know where all of them are but do know the is one right on the top on the right side. Have none in my neck but do have one in my spine about one inch below my shoulder blades. The pain has periods were it gets extremely worse but it is always there and never goes away completely. My vision at this moment is fine. Did have a period were if I was reading the paper or computer monitor all the words would turn on an angle and would look 3-D but were not readable. I had to hold everything at an angle for this not to happen. Then one day it went away and hasn't come back. Knock on wood. My eye doctor did tell me that either a cone or disk in both my eyes are abnormal. This is not good news because my father is legally blind due to abnormal blood vessels in the back of the eye that ruptured. Theres a name for it but I don't know what it is. Don't have any urination or bowel problems. Have no problem with my neck. I do have this thing I call the vibes. I have days were it feels like small electrical shocks run up and down my body. It's like a continuous shock that goes from my head to my toes and back continuously. Usually happens in the summer when the humidity is high. Now blood tests are another story. I was diagnosed about a year after my MS with a condition called Polycythemia Vera. Now remember I'm like 30 at this time and this problem usually exists in people around the age of eighty. They did three blood gas tests which is were they take blood directly out of the artery. All tests confirmed this diagnosis. They sent me to a medical college where I had a four hour RBC mass done. This test said the same thing. High red blood cells count, some what elevated white blood cells count, and my plasma level was severly depleted. This is where the confusion in this lies. I'm 5'7" and like 260 lbs. My hemoglobin count is between 46 - 50. My triglyceride level is normal. My LDL is 127. My HDL is 40. All other tests are normal. Now how is it my hemoglobin count is like four times higher than it should be and my cholesterol is excellent. The guy who did the test called me a LSB. He said anyone who is 260 lbs who's cholesterol is at that level is one lucky son of a b. Anyways have been tested for Rheumatoid Arthritis, Gout, Lyme Disease, and any other blood test they could think of. All come back negative. As far as meds go I'm currently on Neurontin. I take 600 milligrams three times a day. This is to relieve the swelling of the lesion in my back. does nothing for the pain in my leg. I never had any pain medicines or anti inflammatory really work for me. Ive taken the following meds with no success. Tylenol three, Vicodin, Darvocet, Percocet, Fentanyl patch 50mcg, Naproxen, Ibuprofen, Day pro, Voltaren, Celebrex, and Baclophen just to name a few. I currently do not take any maintenace meds for my MS. Had bad luck with everything including an allergic reaction to Tysabri. I Hope this answers some of your questions. Again thank you. I await your reply.
    MTNUTHOUSE 4 Replies Flag this Response
  • If you have a complete examination and your doctors can’t find any other cause for your symptoms, then here is a suggestion. It might be a vascular problem. There is a condition called May-Thurner syndrome. It is when the right iliac artery compresses the left iliac vein against the spine. This causes the blood to congest in the left leg because it can not normally pass the compression on its way back to the heart. It does not necessarily results in the pain at the compression site (if it does it gives a lower back pain); most often it causes pain or swelling or both in the left leg and/or buttock. (Sometimes the anatomical structures are different and this can happen on the right side). If you have a compression like this, after a while your circulatory system is trying to develop alternative veins. They are called collateral veins. Most often there are transpelvis collaterals (horizontal ones from left to right in pelvis), but some patients can develop them near the spine or even inside it. Then it can give pressure on nerves and give numbness and tingling sensation in legs. Another typical symptom is ambulating pain, the pain moves around depending on where the pressure is high at the moment. Also, the pain subsides when you lay down. This condition is vastly underdiagnosed. It is impossible to discover with ultrasound and even difficult to discover with venography (phlebography). It is definitely not discovered through the evaluation of the arteries. The only certain way to discover it is by means of intravascular ultrasound (IVUS) where the probe is inside the vein. The best research has been done by Neglén and Raju in Jackson, Miss. The treatment is to put a stent inside the vein at the site of the compression. The typical patient is a young – middle-aged woman, previously healthy where the doctors have not found other explanation for the symptoms. If left untreated, there is a big risk of thrombosis either at the compression site in the left common iliac vein or in the left leg. Could this possibly help? The best of luck! :) Thank you for your reply. Thats interesting what you stated because I had problems for years before they diagnosed me with MS. They always thought it might of been a vascular problem but never found anything wrong. My feet are always ice cold and I have no pulse in the top of either foot. By the way I'm not diabetic. I had a stress test at 25 and it came back wonderful. I know this has no relevance to the subject but I can bend all my toes either individually or together back to touch the top of my foot. Isn't that weird. no one else in my family can do it and everyone who sees it is amazed. Am also double jointed in my shoulders and hands. Anyways thank you and I'll go read up on that to see if it is something to talk to my doctor about. Appreciate you advise. Thank you.
    MTNUTHOUSE 4 Replies Flag this Response
  • Just got the results of an MRI on my lumbar spine. Only thing that they found was that the last vertabre was pushed forward slightly but didn't show any nerve damage.
    MTNUTHOUSE 4 Replies Flag this Response
  • Funny thing you mention your cold feet. I forgot to mention that it's a typical symptom for a vascular problem in general and for May-Thurner's Syndrome in particular. I suffered ice cold feet since I was 20. My feet became wonderfully warm the day after I had the stent put in. And they have been warm ever since. I wish you all the best! :)
    Felsen 510 Replies Flag this Response
  • Michael,thanks for extra information. here are my observations:1. I believe you mean your HEMATOCRIT is 40-50 (not your HEMOGLOBIN). HEMOGLOBIN > 30 are not seen in humans in any disease. PV almost always involve either white blood cells or platelets or both with red cells. RED CELL MASS just tells you that indeed you have higher number of red cells rather than just dehydration (that can result in higher concentration of red cells). I am sure before diagnosing you with PV, your doctors did ERYTHROPOITIN levels and JAK-2 mutation testing. In any case HEMATOCRIT of 45-50 is not a great concern but a baby Aspirin should be used.2. The MS lesion in your spine can explain your leg pain. Other symptoms you have descibed appear more to be related to MS than peripheral neuropathy. I am also wondering if your neurologist has tried BETA-INTERFERON therapy.3. MS symptoms eventually cause symptoms in both legs UNLESS spinal lesions crop up, in that case the affected tract will cause symptoms in one extremity. I want you to imagine there is nothing wrong with your leg but the NERVE TRACTS taking impulses up to your brain are affeced by lesions in the spinal cord making your brain feel the symptoms are coming the leg. When you touch your calf what happens? I will imagine you feel numb rather then pain. 4. doctors will give up very early after teh diagnosis of MS. As of now there is not much is available for MS other than symptom control. 5. PLEASE TALK TO YOUR DOCTOR IF THESE COULD BE TRIED. Your night time Neurontin can be incrased to 1200 mg. Add Cymbalta 60 mg daily (after 30 mg x 4 days). Add Co-Q 10 100 mg twice a day with Vit B12 1000 mcg twice a day. Also add Vitamin D 1000 IU and Magnesium Gluconate 1000 mg at bedtime (last 4 are supplements and available over teh counter). I again stress let your doctor know before taking supplements. 6. Please stop smoking or using Nicotine in any form along with complete cessation of caffeine (including coffee, soda or tea). very occasional alcohol is ok although i would also advice against it. 7. having said that all MS patients respond differently to different treatments. I wish you good luck and let know if any of these worked. I would like to first thank you for your interest in my problem. I will try to answer all your questions to the best of my knowledge. I'm a 35 year old male. I was diagnosed with MS in August of 2002 at the age of 28. It started out I lost all feeling in my left side and the motor abilities in my right arm. Now I say feeling my doctors call it numbness. I was sent to emergency room by my family doctor who thought I might of had a stroke. All test came back fine, no stroke. Had an EMG two days later and found that left side was very week and that the nerves had a delayed response and were jumping twice. I still to this day have sporadic feeling in my left side. I'll give you an example of what I'm talking about. The first couple of minutes in a shower feels like someone is beating me with a wire brush. Then I go numb and don't feel it. Rain is the same way. I can pick up a hot cup of any beverage and it feels cold. I touch ice it feels hot like fire. This only happens on my left side, not on my right. I don't believe I had any nerve biopsy done. My left calf is bigger than my right. I have around fifteen lesions in my brain. I don't know where all of them are but do know the is one right on the top on the right side. Have none in my neck but do have one in my spine about one inch below my shoulder blades. The pain has periods were it gets extremely worse but it is always there and never goes away completely. My vision at this moment is fine. Did have a period were if I was reading the paper or computer monitor all the words would turn on an angle and would look 3-D but were not readable. I had to hold everything at an angle for this not to happen. Then one day it went away and hasn't come back. Knock on wood. My eye doctor did tell me that either a cone or disk in both my eyes are abnormal. This is not good news because my father is legally blind due to abnormal blood vessels in the back of the eye that ruptured. Theres a name for it but I don't know what it is. Don't have any urination or bowel problems. Have no problem with my neck. I do have this thing I call the vibes. I have days were it feels like small electrical shocks run up and down my body. It's like a continuous shock that goes from my head to my toes and back continuously. Usually happens in the summer when the humidity is high. Now blood tests are another story. I was diagnosed about a year after my MS with a condition called Polycythemia Vera. Now remember I'm like 30 at this time and this problem usually exists in people around the age of eighty. They did three blood gas tests which is were they take blood directly out of the artery. All tests confirmed this diagnosis. They sent me to a medical college where I had a four hour RBC mass done. This test said the same thing. High red blood cells count, some what elevated white blood cells count, and my plasma level was severly depleted. This is where the confusion in this lies. I'm 5'7" and like 260 lbs. My hemoglobin count is between 46 - 50. My triglyceride level is normal. My LDL is 127. My HDL is 40. All other tests are normal. Now how is it my hemoglobin count is like four times higher than it should be and my cholesterol is excellent. The guy who did the test called me a LSB. He said anyone who is 260 lbs who's cholesterol is at that level is one lucky son of a b. Anyways have been tested for Rheumatoid Arthritis, Gout, Lyme Disease, and any other blood test they could think of. All come back negative. As far as meds go I'm currently on Neurontin. I take 600 milligrams three times a day. This is to relieve the swelling of the lesion in my back. does nothing for the pain in my leg. I never had any pain medicines or anti inflammatory really work for me. Ive taken the following meds with no success. Tylenol three, Vicodin, Darvocet, Percocet, Fentanyl patch 50mcg, Naproxen, Ibuprofen, Day pro, Voltaren, Celebrex, and Baclophen just to name a few. I currently do not take any maintenace meds for my MS. Had bad luck with everything including an allergic reaction to Tysabri. I Hope this answers some of your questions. Again thank you. I await your reply.
    Anonymous 42,789 Replies Flag this Response
  • Magubmd, But if there is nothing wrong with the leg itself, how can the leg be so swollen? :confused:
    Felsen 510 Replies Flag this Response
  • I was diagnosed about a year after my MS with a condition called Polycythemia Vera. Now remember I'm like 30 at this time and this problem usually exists in people around the age of eighty. They did three blood gas tests which is were they take blood directly out of the artery. All tests confirmed this diagnosis. They sent me to a medical college where I had a four hour RBC mass done. This test said the same thing. High red blood cells count, some what elevated white blood cells count, and my plasma level was severly depleted. This is where the confusion in this lies. I'm 5'7" and like 260 lbs. My hemoglobin count is between 46 - 50.I think you should Go for a second third whatever opinion .First off Why are you on Neurontin does it help with your pain. If you have Polycythemia Vera you Should be on more medication blood thinners and water pills. plus you could need potassium. And you should be having blood drawn quite often because your blood becomes to thick to pump. Are you sleeping with oxygen.The blood gas test that told them you have this disease told them you had to much co and not oxegen.They also say this disease is an older person problem the main thing is no one is tested for it until it causes a problem.Plus this runs in my family so I have delt with it before does anyone else in your family have it.I would realy suggest going to a whole new set of dr s and see if they find something Diff.Have you read up on the side effects of Neurontin it describes half your problems.
    bill72 32 Replies Flag this Response
  • Have you been tested for Factor V Leiden? Have they ruled this out? Have they ruled out reactive arthritis? I'm sorry I don't have any other ideas for you. As a Doctor of Oriental Medicine I have treated MS very successfully in my clinic. Please consider this form of medicine, or other CAM forms of medicine. High doses of protealytic enzymes are helpful for reducing inflammation - talk with your doctor about that. If your symptoms come and go, you may want to do a food diary for a month or two and see if any foods are contributing to your symptoms. There may not be a connection, but often there is with chronic diseases like MS. Best wishesDOM
    acuann 3,080 Replies Flag this Response
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