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Pelvic pain, leg pain, and hand/feet tingling. Any possibility of MS?
I have been suffering with pelvic pain and pain down my legs for 4 years now. I have seen several doctors and I seem to go in circles. Every doctor I see has referred me to a specialist I have already seen. But more importantly, the pain I am experiencing is so intense at times that it is absolutely unbearable. I would describe this pain as a 10 on a pain scale. It is so severe that I would give anything for it to go away. Fortunately, my pain is episodic so I know eventually it will go away, even if it doesn’t feel like it at the time. I have many pain episodes throughout the day which are less severe, but I would say the majority of them are no less than a 6 on a pain scale. It is still quite painful but I have been dealing with it for so long that I have learned to appear that I am in less pain than I actually am. This pain I am experiencing has disrupted all aspects of my life.
The following is the account of how my symptoms progressed chronologically from the best I can remember. Some of these symptoms may or may not be related to each other. It mainly focuses on the pain, because the constant on and off tingling of my hands, feet, and calves is completely bearable compared to the pain.
About 4 years ago I developed a dull ache in my rectum that was on the left side. The pain would only last a couple minutes to a half an hour at the most and I would have about two episodes a day. Over the course of a year the problem gradually got worse. Not only did the intensity of the pain get severely worse, but the pain spread to other areas in my pelvic region and the episodes became much more frequent (anywhere from 3 a day to about 85 a day) and lasted anywhere from 2 minutes to an hour. The pain became very intense behind my tailbone, behind my left ilium, and also on the left side of my abdomen, in the area near my left ovary.
After dealing with the pain for a year and not being able to handle the intensity of the pain episodes, I finally went to the hospital. They did blood work and a pelvic exam. My blood work and test results came back fine. I was released with “pain of unknown origin.” I was told to come back if the pain came back. This was highly discouraging since I had had the pain for a year and it ALWAYS came back.
I followed up with my primary care whom ordered an ultrasound of my pelvis and kidneys. The ultrasound only showed a very small cyst on my right ovary. At this point in time I had absolutely no pain on the right side. All my pain was on the left side, with the exception of my tailbone. The cyst did not seem to be the culprit.
Over the following three years, I got much worse. About 2 years into the pain, I developed severe pain in my bladder.. I still had pain in all the other areas I had previously mentioned, but the intense bladder pain was new. Sometimes I would only have pain in my bladder, sometimes just the tail bone, sometimes just my left side, sometimes just in my left ilium and sometimes it was in all places at once and other times it would be in different combinations of the areas. I went back to my doctor and informed her about the bladder pain. She told me to see an urologist.
About six months later I started getting severe pain running down both my legs. I also started to develop other symptoms. Tingling in my hands and both feet and calves. Severe fatigue at times where I would get tired just washing my hair or putting clothes in the dryer. I could not deal with any type of heat. Standing next to the stove top or a running copying machine would make me feel that cognitively I could not function. I could not make a clear thought in my mind, could couldn’t even speak without stuttering, it’s hard to describe but I felt like my brain wasn’t functioning right. I would turn bright red, I could not cool down and it seemed like some sort of heat stroke even from the smallest bit of heat exposure. I noticed that when I was exposed to heat, that the pin and needles feeling I would get in my hands and legs would always happen. One day, I was driving home from work and my car air conditioning broke, I began to feel tingling in my pinky fingers and started feeling odd so I started to pull over. At first my hands started to contract and then my whole body started to tingle and then my whole body tensed up. I could not speak and could not even get out of my car. My hands were so severely, clamped up that I could not even grab the phone to call 911. I was able to pry my hand open and press send to call my last call. Slowly after about 15 min my hands untensed enough that I could make a call and speak clearly enough to get help.
I finally went and saw the urologist. I told him about all of my symptoms, including the tingling and my cognitive issues, which at this point included having major memory issues as well. I’m 34. At this point a new symptom developed which was that I felt a hot poker feeling the area of my pancreas and the pain was now developing on my right side. He told me he did not think that my issues were urological and thought I could have multiple sclerosis and referred me to a neurologist. He also gave me a prescription for Gabapentin.
I saw a neurologist and he looked in my eyes, checked my reflexes, had me hop on one foot and told me he did not think I had MS or anything neurological and told me it may be psychosomatic. He gave me a prescription for amitriptyline.It is hard for me to accept that all of my suffering is psychosomatic.
Over time, I was able to see a pattern with my pain. I never ever have my pain 2 days before I start menstruating, during the week of my period and a few days after. Also, my pain episodes do not have a clear cut pattern once they start happening. I seem to get them whenever….sitting, standing, walking, laying down, but, I have them slightly more frequently and intensely in the middle of the night, in the mornings, when I have transitioned from sitting to standing.
Because of the pattern with my menstrual cycle I decided to see a gynecologist. Could it me endometriosis? I saw the gynecologist and he told me he did not think I had endometriosis. He thought maybe I had myofascial pelvic pain syndrome. After pelvic examination, he determined that he did not think I had myofascial pelvic pain syndrome. He thought the urologist was correct in his Multiple Sclerosis suspicions, but if I already saw a neurologist then he said I should see a physical therapist. He prescribed me 800 mg ibuprofen and birth control.
I started taking the birth control and the week I started it was the only time I had my pain during the week of my period. It was just the first week and only this week since. Also, I noticed that after my period, when I would begin taking the pill it was always the following day I would be in pain again. Before I was on birth control, the days would vary from 2-4 after I stopped menstruating. Being on birth control I could almost exactly predict when I would and would not be in pain. Could hormones be influencing my pain? After being on birth control for a few months I decided to stop taking it. My first period not being on the pill, after I stopped menstruating, I did not have any pain for a full week. This was the longest I have been without pain, with the exception of the week I’m menstruating, in a very very long time. During this same week I had short sharp stabbing pains about 4 times during this same week near my tailbone and vaginal area, also I had an electric shock feeling up my left leg coupled with my leg giving out when I would try to get out of bed or off the couch.
I am seeing a new primary care on March 7th if I can make it till then. I am just afraid this cycle will continue and I will have no relief, no diagnosis, and no hope in sight.
Thank you for reading if you made it to the end!
The following is the account of how my symptoms progressed chronologically from the best I can remember. Some of these symptoms may or may not be related to each other. It mainly focuses on the pain, because the constant on and off tingling of my hands, feet, and calves is completely bearable compared to the pain.
About 4 years ago I developed a dull ache in my rectum that was on the left side. The pain would only last a couple minutes to a half an hour at the most and I would have about two episodes a day. Over the course of a year the problem gradually got worse. Not only did the intensity of the pain get severely worse, but the pain spread to other areas in my pelvic region and the episodes became much more frequent (anywhere from 3 a day to about 85 a day) and lasted anywhere from 2 minutes to an hour. The pain became very intense behind my tailbone, behind my left ilium, and also on the left side of my abdomen, in the area near my left ovary.
After dealing with the pain for a year and not being able to handle the intensity of the pain episodes, I finally went to the hospital. They did blood work and a pelvic exam. My blood work and test results came back fine. I was released with “pain of unknown origin.” I was told to come back if the pain came back. This was highly discouraging since I had had the pain for a year and it ALWAYS came back.
I followed up with my primary care whom ordered an ultrasound of my pelvis and kidneys. The ultrasound only showed a very small cyst on my right ovary. At this point in time I had absolutely no pain on the right side. All my pain was on the left side, with the exception of my tailbone. The cyst did not seem to be the culprit.
Over the following three years, I got much worse. About 2 years into the pain, I developed severe pain in my bladder.. I still had pain in all the other areas I had previously mentioned, but the intense bladder pain was new. Sometimes I would only have pain in my bladder, sometimes just the tail bone, sometimes just my left side, sometimes just in my left ilium and sometimes it was in all places at once and other times it would be in different combinations of the areas. I went back to my doctor and informed her about the bladder pain. She told me to see an urologist.
About six months later I started getting severe pain running down both my legs. I also started to develop other symptoms. Tingling in my hands and both feet and calves. Severe fatigue at times where I would get tired just washing my hair or putting clothes in the dryer. I could not deal with any type of heat. Standing next to the stove top or a running copying machine would make me feel that cognitively I could not function. I could not make a clear thought in my mind, could couldn’t even speak without stuttering, it’s hard to describe but I felt like my brain wasn’t functioning right. I would turn bright red, I could not cool down and it seemed like some sort of heat stroke even from the smallest bit of heat exposure. I noticed that when I was exposed to heat, that the pin and needles feeling I would get in my hands and legs would always happen. One day, I was driving home from work and my car air conditioning broke, I began to feel tingling in my pinky fingers and started feeling odd so I started to pull over. At first my hands started to contract and then my whole body started to tingle and then my whole body tensed up. I could not speak and could not even get out of my car. My hands were so severely, clamped up that I could not even grab the phone to call 911. I was able to pry my hand open and press send to call my last call. Slowly after about 15 min my hands untensed enough that I could make a call and speak clearly enough to get help.
I finally went and saw the urologist. I told him about all of my symptoms, including the tingling and my cognitive issues, which at this point included having major memory issues as well. I’m 34. At this point a new symptom developed which was that I felt a hot poker feeling the area of my pancreas and the pain was now developing on my right side. He told me he did not think that my issues were urological and thought I could have multiple sclerosis and referred me to a neurologist. He also gave me a prescription for Gabapentin.
I saw a neurologist and he looked in my eyes, checked my reflexes, had me hop on one foot and told me he did not think I had MS or anything neurological and told me it may be psychosomatic. He gave me a prescription for amitriptyline.It is hard for me to accept that all of my suffering is psychosomatic.
Over time, I was able to see a pattern with my pain. I never ever have my pain 2 days before I start menstruating, during the week of my period and a few days after. Also, my pain episodes do not have a clear cut pattern once they start happening. I seem to get them whenever….sitting, standing, walking, laying down, but, I have them slightly more frequently and intensely in the middle of the night, in the mornings, when I have transitioned from sitting to standing.
Because of the pattern with my menstrual cycle I decided to see a gynecologist. Could it me endometriosis? I saw the gynecologist and he told me he did not think I had endometriosis. He thought maybe I had myofascial pelvic pain syndrome. After pelvic examination, he determined that he did not think I had myofascial pelvic pain syndrome. He thought the urologist was correct in his Multiple Sclerosis suspicions, but if I already saw a neurologist then he said I should see a physical therapist. He prescribed me 800 mg ibuprofen and birth control.
I started taking the birth control and the week I started it was the only time I had my pain during the week of my period. It was just the first week and only this week since. Also, I noticed that after my period, when I would begin taking the pill it was always the following day I would be in pain again. Before I was on birth control, the days would vary from 2-4 after I stopped menstruating. Being on birth control I could almost exactly predict when I would and would not be in pain. Could hormones be influencing my pain? After being on birth control for a few months I decided to stop taking it. My first period not being on the pill, after I stopped menstruating, I did not have any pain for a full week. This was the longest I have been without pain, with the exception of the week I’m menstruating, in a very very long time. During this same week I had short sharp stabbing pains about 4 times during this same week near my tailbone and vaginal area, also I had an electric shock feeling up my left leg coupled with my leg giving out when I would try to get out of bed or off the couch.
I am seeing a new primary care on March 7th if I can make it till then. I am just afraid this cycle will continue and I will have no relief, no diagnosis, and no hope in sight.
Thank you for reading if you made it to the end!
I have a very similar timeline as you and am experiencing very much the same symptoms especially the sharp pelvic pain and unexplained tingling in my legs. I am also on a medical whirlwind as I keep getting referred from one doctor to the next. My symptoms are getting progressively worse and I have also been put on amitryptilline which has helped but does not explain the root of the problem. Please keep in touch I think we have the same thing going on
1 Comments
Did you ever find out what the diagnosis was? I have a friend going through the same thing.
Thanks for suggesting those sites! Funny you brought up vulvodynia. I did not even mention in my post because I had already written so much, and I wanted to focus on the pelvic pain.
Actually, about 4 years prior to me getting this intense pelvic pain, I had been experiencing vaginal burning, well specifically burning on the labia minora and I saw 5 different gynecologist. All of them told me that they could find no biological reason for my burning, all test were negative. One brought up the possibility of IC, and one did bring up vulvodynia. He performed a q-tip test for the vulvodynia and told me that it was not vulvodynia. I just learned to deal with the burning. It used to be so much worse than it is now, especially also in comparison to the pelvic pain.
It wasn't until about a year ago that a light bulb went off I realized that maybe the vaginal burning I have been dealing with for the past 8+ years could be related to the pelvic pain/leg pain. But, then again it may not be.
My urologist does not think my issues are urological. My current gynecologist does not think it is gynecological, he did not even bring up vulvodynia. He actually recommended I see a physical therapist. The neurologist does not think it neurological...so round and round I go.
Thanks again for your input and the sites. Hopefully I can get this figured out one day.
Actually, about 4 years prior to me getting this intense pelvic pain, I had been experiencing vaginal burning, well specifically burning on the labia minora and I saw 5 different gynecologist. All of them told me that they could find no biological reason for my burning, all test were negative. One brought up the possibility of IC, and one did bring up vulvodynia. He performed a q-tip test for the vulvodynia and told me that it was not vulvodynia. I just learned to deal with the burning. It used to be so much worse than it is now, especially also in comparison to the pelvic pain.
It wasn't until about a year ago that a light bulb went off I realized that maybe the vaginal burning I have been dealing with for the past 8+ years could be related to the pelvic pain/leg pain. But, then again it may not be.
My urologist does not think my issues are urological. My current gynecologist does not think it is gynecological, he did not even bring up vulvodynia. He actually recommended I see a physical therapist. The neurologist does not think it neurological...so round and round I go.
Thanks again for your input and the sites. Hopefully I can get this figured out one day.
Thanks Sarah. I'm hoping to convince my new doctor to order an MRI. Sorry about the paragraphs.I typed it up in Microsoft word and copied/pasted...it didn't keep the format. Thanks again :)
Thanks HVAC. I should probably get a second opinion with another gynecologist. I saw a new one a few months ago at University of Miami and he did not think my issues were gynecological, but you never know. Thanks again.
Here's another website that I think you'll appreciate:
http://www.msworld.org/forum/showthread.php?t=115924
http://www.msworld.org/forum/showthread.php?t=115924
Hi,
I'm going to take a stab (oops,no pun intended) at this;hopefully it will help.I noticed that the pain that ran up your legs sounded just like the pain I had this weekend,after alot of sitting.It was in the pelvic region.I had a relapse Monday and Tuesday.It sounds like vulvodynia.Then you also mention your bladder.Vulvodynia can co-exist with interstitial cystitis (IC).That's some pain!
Unfortunately getting a diagnosis for anything takes so long! But here's a website you can look at to get an idea as to whether this could be the problem.
http://www.ichelp.org/page.aspx?pid=329
And,btw,hormones can definitely affect relapses! My suggestion is to find a Dr that is willing to listen to you and do research if necessary!
I'm going to take a stab (oops,no pun intended) at this;hopefully it will help.I noticed that the pain that ran up your legs sounded just like the pain I had this weekend,after alot of sitting.It was in the pelvic region.I had a relapse Monday and Tuesday.It sounds like vulvodynia.Then you also mention your bladder.Vulvodynia can co-exist with interstitial cystitis (IC).That's some pain!
Unfortunately getting a diagnosis for anything takes so long! But here's a website you can look at to get an idea as to whether this could be the problem.
http://www.ichelp.org/page.aspx?pid=329
And,btw,hormones can definitely affect relapses! My suggestion is to find a Dr that is willing to listen to you and do research if necessary!
I'm surprised that no one has offered to do an MRI for you (with and without contrast). I agree with Alex, I don't think you have Ovarian Cancer.
I will tell you that MS is a "slow moving train" and it took me a long time to prove I had it, and I went thru several neurologists who gave me so many different diagnosis which were not even right. When I found the neurologist I have now, he said I have probably had it since 1981.
So keep trying and perhaps find a neurologist who specializes in MS to rule that out. Keep a time line of your symptoms!
One little request, break your posts up into paragraphs which makes it easier for us to read and comprehend. Many of us have a hard time with long paragraphs.
Welcome to our little corner of the world!
I will tell you that MS is a "slow moving train" and it took me a long time to prove I had it, and I went thru several neurologists who gave me so many different diagnosis which were not even right. When I found the neurologist I have now, he said I have probably had it since 1981.
So keep trying and perhaps find a neurologist who specializes in MS to rule that out. Keep a time line of your symptoms!
One little request, break your posts up into paragraphs which makes it easier for us to read and comprehend. Many of us have a hard time with long paragraphs.
Welcome to our little corner of the world!
Gynecological issues can be the hardest to be diagnosed.
I had constant vaginal bleeding for two years then I stopped all together, lower left abdominal pain ( I even had my gall bladder out and the pain was the same), weight loss,extended belly, constipation, diaphragm spasms which put me on the floor. I went to specialist and the ER for years. They did ultra sounds and CT Scans and endometrial biopsies. Finally they found I had Ovarian Cancer. The cancer was blocking my bowels so I finally just could not eat.
I do not think you have Ovarian Cancer but if it were me I would get a good gynecologist to rule out anything gynecological.
Alex
I had constant vaginal bleeding for two years then I stopped all together, lower left abdominal pain ( I even had my gall bladder out and the pain was the same), weight loss,extended belly, constipation, diaphragm spasms which put me on the floor. I went to specialist and the ER for years. They did ultra sounds and CT Scans and endometrial biopsies. Finally they found I had Ovarian Cancer. The cancer was blocking my bowels so I finally just could not eat.
I do not think you have Ovarian Cancer but if it were me I would get a good gynecologist to rule out anything gynecological.
Alex
Hi. I'm sorry, I couldn't read all of what you posted, because I have some problems with my eyes. I did see Amitriptyline. That's not a prescription for someone with a psychosomatic illness. This drug has been proven to help with real pain, and it sure sounds like you're in pain! I hope you give it a shot.
Hopefully someone else here can be more helpful than I am- but I just wanted you to know that your doctor was taking your pain seriously.
Tammy
Hopefully someone else here can be more helpful than I am- but I just wanted you to know that your doctor was taking your pain seriously.
Tammy
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