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MS symptoms or I am crazy?
Hello everyone, I hope someone can help me.
I have always had a high threshold for pain, having been born with bilat club foot and have gotten used to hip, leg, back pain which I had always attributed to that. The foot specific pain has been become severe enough in the last few years (I am 41) that I take a large dose of a cox2inhibitor. I believe that is where my problem started in that the cox2i masks ALL pain (dose is necessary to not walk with a limp and get throgh the day) and I think I have had my head in the sand for the last few years about the following symptoms. I tend to blame all pain on the feet and move on. The last few months I have had severe left hip pain, in the joint, associated with electrical back jolts of pain on both sides. I can't get sleep through the night and often need a vicodin to get some rest. I have some clicking and the hip feels like I need to support it with my hand or it will give out. On the left side I have numbness, 24/7 in a several inch band from thigh to ankle. The left foot has gotten very cold to the touch, a few times. I hae had sciatica in the past and some of these symptoms are similiar but this is not just sciatic.I am usually HOT, hate the heat and freeze my family out, but sometimes I get chilled and have a very difficult time warming up. Other things: I woke up with my left arm and hand clenched and unusable until my chiropractor used electric stimulation and manipulation to open up my arm. My left foot and leg cramps (usually from a lying down and changing position) and my big toe goes up and my toes splay out. This has happened many times. I am fatigued, feel disoriented, dizzy just sitting and when in the shower and I close my eyes to rinse my hair.) Had some very significant dizziness a few years ago which was diagnosed as BPPV and treated, but has never gone away completely. I have crs disease (can't remember ****) lately and forget where I put everything including my diamond ring. My neck often cramps up, requires visit to the chiropractor or massage therapist. I get shooting pain down my back on both sides that burns then goes away quickly. My arms and hand go to sleep easily while sitting on a chair with arms, and my legs and feet esp. on the left, require constant position changes to adjust the tingling and numbness. I feel like hell most days but I manage to work and raise a family, but I am dragging on the ground by late afternoon.
I finally went to the orthopaedic surgeion about the hip and he told me I have clonus/hyper reflexes and is sending me for an MRI of the neck and hip (not for 2 weeks). He thinks it is spinal cord/neuro and not the hip joint. . My grandmother had MS (but I am adopted and that is all I know). I used to be a ski patroller and professionsl whitewater raft guide; play hockey and do everything my feet would tolerate. Now it hurts to bend my leg to clip my tonenails.
My husband thinks I am wacko and a hypochondriac and I am beginning to believe him. Would anyone like to agree? I am scared.
I have always had a high threshold for pain, having been born with bilat club foot and have gotten used to hip, leg, back pain which I had always attributed to that. The foot specific pain has been become severe enough in the last few years (I am 41) that I take a large dose of a cox2inhibitor. I believe that is where my problem started in that the cox2i masks ALL pain (dose is necessary to not walk with a limp and get throgh the day) and I think I have had my head in the sand for the last few years about the following symptoms. I tend to blame all pain on the feet and move on. The last few months I have had severe left hip pain, in the joint, associated with electrical back jolts of pain on both sides. I can't get sleep through the night and often need a vicodin to get some rest. I have some clicking and the hip feels like I need to support it with my hand or it will give out. On the left side I have numbness, 24/7 in a several inch band from thigh to ankle. The left foot has gotten very cold to the touch, a few times. I hae had sciatica in the past and some of these symptoms are similiar but this is not just sciatic.I am usually HOT, hate the heat and freeze my family out, but sometimes I get chilled and have a very difficult time warming up. Other things: I woke up with my left arm and hand clenched and unusable until my chiropractor used electric stimulation and manipulation to open up my arm. My left foot and leg cramps (usually from a lying down and changing position) and my big toe goes up and my toes splay out. This has happened many times. I am fatigued, feel disoriented, dizzy just sitting and when in the shower and I close my eyes to rinse my hair.) Had some very significant dizziness a few years ago which was diagnosed as BPPV and treated, but has never gone away completely. I have crs disease (can't remember ****) lately and forget where I put everything including my diamond ring. My neck often cramps up, requires visit to the chiropractor or massage therapist. I get shooting pain down my back on both sides that burns then goes away quickly. My arms and hand go to sleep easily while sitting on a chair with arms, and my legs and feet esp. on the left, require constant position changes to adjust the tingling and numbness. I feel like hell most days but I manage to work and raise a family, but I am dragging on the ground by late afternoon.
I finally went to the orthopaedic surgeion about the hip and he told me I have clonus/hyper reflexes and is sending me for an MRI of the neck and hip (not for 2 weeks). He thinks it is spinal cord/neuro and not the hip joint. . My grandmother had MS (but I am adopted and that is all I know). I used to be a ski patroller and professionsl whitewater raft guide; play hockey and do everything my feet would tolerate. Now it hurts to bend my leg to clip my tonenails.
My husband thinks I am wacko and a hypochondriac and I am beginning to believe him. Would anyone like to agree? I am scared.
Hello River and welcome to the forum. I am sorry that you are feeling scared and unbelieved, it amazes me how anyone could think that of such someone who was once such an active person. ((hugs))
(I know the feeling, I used to do it all also). I also believe that you know your body and no one else does. You know when something is not right, and know how you used to be. It is amazing that you are still managing to work, you are a strong woman. I absolutely do not think you are wacky or a hypochondriac.
Hang in there
Jazzy
(I know the feeling, I used to do it all also). I also believe that you know your body and no one else does. You know when something is not right, and know how you used to be. It is amazing that you are still managing to work, you are a strong woman. I absolutely do not think you are wacky or a hypochondriac.
Hang in there
Jazzy
My husband does'nt have MS but about 13 years ago he hurt his back. He was playing football with our son and was kicking the ball. The next day he could not move. We finally got him to the hospital and he wa paralyzed for over a week before the feeling started comeing back. When it did come back so did the pain. Boy do I mean pain.
A few weeks later he had back surgery and actually made him worse. So for all of those years I had to listen to him complain and moan and groan. I thought that he made it worse than it was. I would get so mad at him. I resented him so much. I would tell him that if all he's gonna do is lay around and complain then at least go out side and do it cause I was tired of hearing it.
I did'nt like being around him because I had to do everything. I had to take care of the yard, the house, full time job, 3 children, (1 was a newborn) ballgames and practices, and anything else you can think of. I really thought that he was faking most of it to not have to work.
Then in 2004 my MS took hold. I then knew what pain was. By this time he was well enough to be working and doing everthing, he just learned to live with the pain. To this day I feel so guilty for the way I treated him and resented him. I will never be able to make all that up to him. I do make sure now when he says his back or legs are hurting that I rub them for him and sympathize with him.
The really bad part is because he knows what pain is like he has babied me from day 1. He does'nt question me when I complain. He understands.
We are not perfect. We will always make mistakes, but we need to be very careful about doubting someone in pain. It is a horrible life to live in it everyday but we must go on.
Keep everything in God's hands
Carol
A few weeks later he had back surgery and actually made him worse. So for all of those years I had to listen to him complain and moan and groan. I thought that he made it worse than it was. I would get so mad at him. I resented him so much. I would tell him that if all he's gonna do is lay around and complain then at least go out side and do it cause I was tired of hearing it.
I did'nt like being around him because I had to do everything. I had to take care of the yard, the house, full time job, 3 children, (1 was a newborn) ballgames and practices, and anything else you can think of. I really thought that he was faking most of it to not have to work.
Then in 2004 my MS took hold. I then knew what pain was. By this time he was well enough to be working and doing everthing, he just learned to live with the pain. To this day I feel so guilty for the way I treated him and resented him. I will never be able to make all that up to him. I do make sure now when he says his back or legs are hurting that I rub them for him and sympathize with him.
The really bad part is because he knows what pain is like he has babied me from day 1. He does'nt question me when I complain. He understands.
We are not perfect. We will always make mistakes, but we need to be very careful about doubting someone in pain. It is a horrible life to live in it everyday but we must go on.
Keep everything in God's hands
Carol
Dear Karina, thanks for your comments. Try and forgive your self for the negative feelings you had toward your mom growing up; the correct perspective comes with maturity and I would venture to say most are not exceptionaly mature while in high school. I certainly wasn't! Is your mom still with you? If she is tell here how sorry you are. The empathy, even after all those years, would be a blessed thing.
Thanks for sharing your perspective--Melissa
Thanks for sharing your perspective--Melissa
Dear Wanna,
thanks for your encouragement and your suggestin to take him to an appointment is a great one. I too am supermom, (though not quite June Cleaver) and do everything for everyone or it doesn't get done. It is hard to not keep doing that even though my body so NO emphatically. Lately, I do actually lay down for a few when I am whipped and have let the laundrey sit a little longer and increased my threshold for the definition of a dirty kitchen floor.
Interestingly, my rheum. thinks I have some bursitis in my hip but acknowledged that there is something CNS going on and seems to be right on target. It is amazing how a physician who checks their ego at the door and really listens can not only provide better care, but leave the patient with a positive sense of well being (that is so easily shattered when they are dealing with a chronic illness.) I think we are going to wait on any kind of PT until the jury reports in. thanks for your support, being supermom is a hard habit to break even when your body is screaming for you to.
Take care, Melissa
thanks for your encouragement and your suggestin to take him to an appointment is a great one. I too am supermom, (though not quite June Cleaver) and do everything for everyone or it doesn't get done. It is hard to not keep doing that even though my body so NO emphatically. Lately, I do actually lay down for a few when I am whipped and have let the laundrey sit a little longer and increased my threshold for the definition of a dirty kitchen floor.
Interestingly, my rheum. thinks I have some bursitis in my hip but acknowledged that there is something CNS going on and seems to be right on target. It is amazing how a physician who checks their ego at the door and really listens can not only provide better care, but leave the patient with a positive sense of well being (that is so easily shattered when they are dealing with a chronic illness.) I think we are going to wait on any kind of PT until the jury reports in. thanks for your support, being supermom is a hard habit to break even when your body is screaming for you to.
Take care, Melissa
Carol, tanks for your "peace." Not being believed is especially bothersome because I have an extensive medical background and keep up on the latest science on a daily basis (though in cardiovascular, so this neuro thing is very new to me). At least my kids seem to sense when I am not feeling good and need to rest. Thanks for the advice and prayers. -Melissa
Thanks to everyone for welcoming me and making me feel a lot less crazy! Quix, thanks for the time you take in evaluating us "newbies" and offering your great and very welcomed advice. I am so sorry to hear that your own fatigue has been so bothersome, sleep is a beautiful thing but it is hard when you need so much of it! I saw a rheumatologist that I saw several years ago with the hip pain and he is referring me to a neurologist; the doc here is at an academic institution and is an MS specialist, thankfully. The rheum., who I had a great professional relationship with (I work in pharma trials) took lots of time to listen and definately agrees that these are two or more processes, and that he has a hunch MS is lurking somewhere. He did indeed order a brain, sc and hip MRI. I did forget to tell him that when I get fatigued my right hand has begun to get a tremor, sometimes very significant. I have one last question; I did a lit search and the consensus seems to be that a 3T vs a 1.5T MRI has a 25-30% greater specificity to detect MS. Should I push for one? There is only one in the city and it is at another institution. Thanks for all of your help, Melissa
Listen... you know your body. You know what you're feeling. My mom complained of symptoms and "Chipmunks gnawing at her bones" for years. She was diagnosed with MS 35 years ago, and I would get so frustrated with her. She also only felt good sometimes, and other times, she'd lay on a bed for days or weeks. If you look at her (a lot of the time), you'd never think anything was wrong with her. I resented her for never coming to my softball games and not being involved in my life like I thought she should be.
Now, I'm 35, and I am having MS-like symptoms. My MRI is normal, but I know something is wrong. I completely understand the "chipmunks gnawing at her bones" comment because I feel that horrible sensation now. I feel horrible for the feelings that I've had about her for all of these years. The comment from Wanna was so true. Have your husband go with you to a neurologist, especially if you are diagnosed with MS. It will put a whole new perspective in place for him.
Good luck to you. What Grannyhotwheels and Quixtoxic1 said are sooo true too. A person who was once as active as you have been does not suddenly become a hypochondriac. You know your body - don't let others sway you from finding out what's going on with you. Find the answers.
God bless, Karina
Now, I'm 35, and I am having MS-like symptoms. My MRI is normal, but I know something is wrong. I completely understand the "chipmunks gnawing at her bones" comment because I feel that horrible sensation now. I feel horrible for the feelings that I've had about her for all of these years. The comment from Wanna was so true. Have your husband go with you to a neurologist, especially if you are diagnosed with MS. It will put a whole new perspective in place for him.
Good luck to you. What Grannyhotwheels and Quixtoxic1 said are sooo true too. A person who was once as active as you have been does not suddenly become a hypochondriac. You know your body - don't let others sway you from finding out what's going on with you. Find the answers.
God bless, Karina
I am so sorry you are going through this. It is so difficult to go from being an active person to a pile of symptoms!
If your husband is having difficulty “believing” you, he’ll need a reality check by going with you to your doctor appointments. My husband had a problem with how my illness changed his life. I was extremely active (running and cycling), an impeccable house keeper (a June Cleaver so to speak), had my own business, belonged to the school organizations, bla, bla, bla, but slowly all that changed. My husband couldn’t handle it.
To make a long story short, he went with me to one of my neurologist visits and his eyes were opened when the doc explained my fatigue to him and why it was happening. Then my husband and I went to marriage counseling and the counselor told my husband he needed to lower his standards because I was no longer superwoman. (I loved that counselor!) Things have greatly improved around my home since then and he is helping make things easier for me.
Hip pain has been with me for years and initially, about 8 years ago, I was told it was bursitis, but this past summer my neuro said there was “no way” it could be bursitis. It comes from a nerve problem in my back.
Has anyone suggested PT for you?
There are so many things that your symptoms could be, and it will take a lot of time and testing to zero in on it. Like you, I ignored so much of what was happening to me, and it all came to a head this past year. As it turned out I didn’t have one specific thing wrong, it is actually four different things and it took what seemed like forever to get some answers.
It is hard waiting and wondering, but hang in there! This is a great forum for support and there are many undiagnosed souls here looking for answers. You are in good company.
Wanna
If your husband is having difficulty “believing” you, he’ll need a reality check by going with you to your doctor appointments. My husband had a problem with how my illness changed his life. I was extremely active (running and cycling), an impeccable house keeper (a June Cleaver so to speak), had my own business, belonged to the school organizations, bla, bla, bla, but slowly all that changed. My husband couldn’t handle it.
To make a long story short, he went with me to one of my neurologist visits and his eyes were opened when the doc explained my fatigue to him and why it was happening. Then my husband and I went to marriage counseling and the counselor told my husband he needed to lower his standards because I was no longer superwoman. (I loved that counselor!) Things have greatly improved around my home since then and he is helping make things easier for me.
Hip pain has been with me for years and initially, about 8 years ago, I was told it was bursitis, but this past summer my neuro said there was “no way” it could be bursitis. It comes from a nerve problem in my back.
Has anyone suggested PT for you?
There are so many things that your symptoms could be, and it will take a lot of time and testing to zero in on it. Like you, I ignored so much of what was happening to me, and it all came to a head this past year. As it turned out I didn’t have one specific thing wrong, it is actually four different things and it took what seemed like forever to get some answers.
It is hard waiting and wondering, but hang in there! This is a great forum for support and there are many undiagnosed souls here looking for answers. You are in good company.
Wanna
I just had to jump in and say my peace. It's your body and nobody but you knows when it hurts and when something is'nt right. DO NOT let anyone talk you into thinking this is all in your head. IT'S NOT. Okay I said my peace.
I'll be praying,
Carol
I'll be praying,
Carol
One, you are not wacko. Two, active, purpose-driven people do not "become" hypochondriac's in my experience (23 years in medical practice). Three, your lower back, hip and foot problems will not cause hyper reflexes and clonus. Period. Good pick up on the part of the ortho guy! Those are signs of disease in the spinal cord or above. Given the tingling in the arms and hands, I would highly (read that HIGHLY) recommend adding an MRI of the brain to the MRI's you are already doing.
The cognitive problems (CRS), the heat intolerance, and the severe fatigue speak to a brain process and not just the spinal cord. It is totally possible, and in your situation, likely that you have more than one thing going on. Probable degenerative disease (arthritis) in your back and hips, but very possibly some other thing (and it does sound MSish) going on in addition. The teasing out of what hurts and why will have to be done with some muscle and nerve studies.
I recommend that you call the ortho and let him know of the fatigue, the heat intolerance and the cognitive issues, along with the arm symptoms and request that he add a brain MRI (w and w/o contrast) to your order. It might delay the appointment (becasue it would need a longer slot of time) but I consider it well worth it.
I am so sorry your husband does not "buy" that you are fatigued and hurting so bad. I'm hopeing you were sort of exaggerating. Stay with us here. MAny of us have all been through the same thing, and you really need people to talk to that have suffered from invisible symptoms. Deep down you KNOW that there is something very wrong, don't you?
Even though we didn't get a timely answer to you, this is the right place for you to be. Please see about adding on the brain MRI and also get a referral to a good neurologist, preferably someone with a lot of MS experience. Even if it is not MS, you need a thorough work up for the causes of all these things. Your hips, feet and lower back are not related to the other stuff that is causing you such disability. Again, people who were extremely athletic, active and who routinely overcame pain and discomfort do not morph into "wimps" and hypochondriacs. (They also do not get psychosomatic hyperreflexia and clonus!)
I hope this helps and that you will stay around. The forum got slow over the holiday and p[eople do expect me to give an evaluation of the complicted new posts, and I just haven't been here. My own fatigue has been getting in the way.
I hope you see this, Quix
The cognitive problems (CRS), the heat intolerance, and the severe fatigue speak to a brain process and not just the spinal cord. It is totally possible, and in your situation, likely that you have more than one thing going on. Probable degenerative disease (arthritis) in your back and hips, but very possibly some other thing (and it does sound MSish) going on in addition. The teasing out of what hurts and why will have to be done with some muscle and nerve studies.
I recommend that you call the ortho and let him know of the fatigue, the heat intolerance and the cognitive issues, along with the arm symptoms and request that he add a brain MRI (w and w/o contrast) to your order. It might delay the appointment (becasue it would need a longer slot of time) but I consider it well worth it.
I am so sorry your husband does not "buy" that you are fatigued and hurting so bad. I'm hopeing you were sort of exaggerating. Stay with us here. MAny of us have all been through the same thing, and you really need people to talk to that have suffered from invisible symptoms. Deep down you KNOW that there is something very wrong, don't you?
Even though we didn't get a timely answer to you, this is the right place for you to be. Please see about adding on the brain MRI and also get a referral to a good neurologist, preferably someone with a lot of MS experience. Even if it is not MS, you need a thorough work up for the causes of all these things. Your hips, feet and lower back are not related to the other stuff that is causing you such disability. Again, people who were extremely athletic, active and who routinely overcame pain and discomfort do not morph into "wimps" and hypochondriacs. (They also do not get psychosomatic hyperreflexia and clonus!)
I hope this helps and that you will stay around. The forum got slow over the holiday and p[eople do expect me to give an evaluation of the complicted new posts, and I just haven't been here. My own fatigue has been getting in the way.
I hope you see this, Quix
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