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Do I have MS or don't I?
I had surgery on my neck-an anterior cervical discectomy and fusion-three levels-(C3-6) on Dec. 18,07. One week later I was admitted back into the hospital.. my symptoms varying..
*my legs from the calf down to my toes were severely swollen(pitting edema-I couldn't even get my socks on!)
*double vision/blurry vision.. but if I closed one eye I could see okay.. still a bit blurry
*leg weakness, stumbling (as if I was intoxicated)
*incontinence (couldn't urinate- when they did the catheter I filled the bag.. so I was holding ALOT of urine)
*difficulty swallowing at times still
They did an MRI, found several lesions including a cyst of some sort..which they didn't seem too concerned about.. So now I have had bloodwork, a lumbar puncture (inconclusive), and now another MRI and more bloodwork. The Neurologist office I started to see was affiliated with the DR who saw me at the ER. I have yet to see that DR, only his PA several times. I decided to go for a second opinion.. this Neuro is convinced I have MS, wants to start me on meds.. but I have been reluctant, still following the other Neuro's office. The first Neuro's office has now sent me to a place that specializes in MS.. they are the ones ordering more tests. They tell me the neck surgery is throwing them off.. because some of the symptoms come from that.. (but the freakin' lesions don't!!!) I have had another 'episode' of this and went to the ER again. I told the ER about the testing for MS.. so they contacted the DR on call from my Neuro's office.. This DR tells the ER doc that I do have MS, but doesn't want to override the other doctor by putting me on meds.. THEN THEY JUST SENT ME HOME!! Still feeling like that, no help at all... I haven't mentioned the pain in my legs.. I was thinking it was related to them removing bone from my L hip for the surgery.. but its in both legs now. I never had ANY problems with my legs before this. So do I have it, or don't I? How do I not find this out until AFTER I have surgery.. nothing indicated this before? The 2nd opinion neuro said if I have no answers by the time I see him again he is starting me on meds.. copaxone?
*my legs from the calf down to my toes were severely swollen(pitting edema-I couldn't even get my socks on!)
*double vision/blurry vision.. but if I closed one eye I could see okay.. still a bit blurry
*leg weakness, stumbling (as if I was intoxicated)
*incontinence (couldn't urinate- when they did the catheter I filled the bag.. so I was holding ALOT of urine)
*difficulty swallowing at times still
They did an MRI, found several lesions including a cyst of some sort..which they didn't seem too concerned about.. So now I have had bloodwork, a lumbar puncture (inconclusive), and now another MRI and more bloodwork. The Neurologist office I started to see was affiliated with the DR who saw me at the ER. I have yet to see that DR, only his PA several times. I decided to go for a second opinion.. this Neuro is convinced I have MS, wants to start me on meds.. but I have been reluctant, still following the other Neuro's office. The first Neuro's office has now sent me to a place that specializes in MS.. they are the ones ordering more tests. They tell me the neck surgery is throwing them off.. because some of the symptoms come from that.. (but the freakin' lesions don't!!!) I have had another 'episode' of this and went to the ER again. I told the ER about the testing for MS.. so they contacted the DR on call from my Neuro's office.. This DR tells the ER doc that I do have MS, but doesn't want to override the other doctor by putting me on meds.. THEN THEY JUST SENT ME HOME!! Still feeling like that, no help at all... I haven't mentioned the pain in my legs.. I was thinking it was related to them removing bone from my L hip for the surgery.. but its in both legs now. I never had ANY problems with my legs before this. So do I have it, or don't I? How do I not find this out until AFTER I have surgery.. nothing indicated this before? The 2nd opinion neuro said if I have no answers by the time I see him again he is starting me on meds.. copaxone?
Hi,
Just stopping in to say Hi, I am a single mom too with an extremely horrid donor (not qualified to be called father) for my youngest child. I get the mommy piece, guilt, family all of it we are such great multi taskers and then we get sick. I don't know what I have either found this site. but being here makes me feel better, saner, and ya know kids need to learn that life is not always easy, mom's can't do everything all the time. This really can be a good learning experiance for them and this whatever is happening to us is clearly not the end of us or the end of being good mom's. Hey maybe it will be one of your kids that grows up to solve the issues of dxing MS??
Guilt and motherhood it's tough I face it daily we will get through this. Honesty is the best way and this group is awesome!
Mary
Just stopping in to say Hi, I am a single mom too with an extremely horrid donor (not qualified to be called father) for my youngest child. I get the mommy piece, guilt, family all of it we are such great multi taskers and then we get sick. I don't know what I have either found this site. but being here makes me feel better, saner, and ya know kids need to learn that life is not always easy, mom's can't do everything all the time. This really can be a good learning experiance for them and this whatever is happening to us is clearly not the end of us or the end of being good mom's. Hey maybe it will be one of your kids that grows up to solve the issues of dxing MS??
Guilt and motherhood it's tough I face it daily we will get through this. Honesty is the best way and this group is awesome!
Mary
YOU HAVE HAD YOUR SHARE SWEETIE TO DEAL WITH.
I CAN RELATE TO THE SPINAL TRAIN WRECK.
BE HONEST WITH YOUR FAMILY ABOUT THE PAIN MANAGEMENT,YOU NEED THIS AND IT IS VERY IMPORTANT TO YOUR HEALING AND COPING THROUGH THE SURGERY.
PLEASE BE HONEST WITH YOUR CHILDREN,THEY ARE RESIDUAL AND THEY TRUELLY NEED TO KNOW THAT LEGAL MEDS COME IN INJECTION FORM.THEY TRUELLY NEED TO KNOW THE DIFFERENCE OF LEGAL NEEDLE MEDS AND ILLEGAL AND THEY WILL RESPECT YOU FOR YOUR HONESTY.
TRY NOT TO SIT AROUND THE HOUSE, A SPINAL WRECK AND THE POSSIBILITY OF MS IS ALL LIVEABLE.PLEASE REMEMBER THAT.
YOU WILL HAVE YOUR DOWN DAYS,BUT ON THE GOOD DAYS HAVE FUN WITH THEM AND HAVE FUN WITH YOUR CHILDTEN WITH THOSE GOOD DAYS.
PLEASE VENT HERE,THIS IS A GOOD GROUP HERE THATS LOVING CARING AND WE WILL WALK THIS PATH WITH YOU.
YOU'LL NEVER BE ALONE.
T
I CAN RELATE TO THE SPINAL TRAIN WRECK.
BE HONEST WITH YOUR FAMILY ABOUT THE PAIN MANAGEMENT,YOU NEED THIS AND IT IS VERY IMPORTANT TO YOUR HEALING AND COPING THROUGH THE SURGERY.
PLEASE BE HONEST WITH YOUR CHILDREN,THEY ARE RESIDUAL AND THEY TRUELLY NEED TO KNOW THAT LEGAL MEDS COME IN INJECTION FORM.THEY TRUELLY NEED TO KNOW THE DIFFERENCE OF LEGAL NEEDLE MEDS AND ILLEGAL AND THEY WILL RESPECT YOU FOR YOUR HONESTY.
TRY NOT TO SIT AROUND THE HOUSE, A SPINAL WRECK AND THE POSSIBILITY OF MS IS ALL LIVEABLE.PLEASE REMEMBER THAT.
YOU WILL HAVE YOUR DOWN DAYS,BUT ON THE GOOD DAYS HAVE FUN WITH THEM AND HAVE FUN WITH YOUR CHILDTEN WITH THOSE GOOD DAYS.
PLEASE VENT HERE,THIS IS A GOOD GROUP HERE THATS LOVING CARING AND WE WILL WALK THIS PATH WITH YOU.
YOU'LL NEVER BE ALONE.
T
Hi! My boys are 13, 10, 8 and 4.. great ages and they understand so much. I'm not sure if my insurance would cover a nurse coming to my house or not. I think that the medication my DR is planning to put me on comes in pre-filled syringes and he would direct me where to give myself the injections. I am a very small woman (5'4"..116lbs.), and from what I read you inject it into "fatty" tissue. The only place I can think of is my rear... LOL! This is all just so overwhelming.. and I just can't believe I had surgery on my neck to come out with all of that still hurting and my legs now too! Unbelievable! My mom tells me I use to wake up in the middle of the night alot with my legs aching so bad she'd have to rub them until any meds she had given me started to work, most of the time I would cry myself to sleep.. so I'm not sure if this has anything to do with MS but I will be sure to mention it to my Neuro DR. Do you have MS, if so.. when did you notice your "onset" of symptoms? How are things going for you? Are you on medication?
Hello, you have been through a lot, its ok to talk about anything here. I think I have an idea if you have to start having the injections, a nurse will usually come to your house and show you how to give yourself the shots, include your children in it and have the nurse explain to them why mommy has to give herself shots.
I know this takes so much out of a person, and your family is feeling it too. Kids always notice even the little things. How old are your boys?
Ada
I know this takes so much out of a person, and your family is feeling it too. Kids always notice even the little things. How old are your boys?
Ada
While going through all this, my DR thought maybe I herniated a disc in my thoracic spine or lumbar so I had MRI's done on both areas and found 2 herniations in my thoracic spine, bone spurs, 3 herniations in my lumbar spine and of course I have been diagnosed with degenerative disc disease and arthritis as well. I also am being evaluated for RSD (whatever that is??).. so it has been a rollercoaster straight down hill for me lately.. but I try to stay positive and know I need to get better for my boys.. I am all they have, and they are my life.. without them, I'd be lost right now.
Thanks for your responses and welcoming me to the forum! I have learned alot by reading stories from others with MS.. and now it just makes me believe that they are going to confirm it on April 1st (MS). I do go for another MRI on Wednesday to see if there are any more lesions.. plus some blood work to rule out the other things that can mimic MS ( all of this bloodwork I have had already plus a LP). As far as the evoked potential.. the Neurologist I went to for the 2nd opinion did do that test (maybe that is why he is so conviced I do have it??) This Dr also thinks that the previous Neuro isn't taking my "case" seriously.. and should have seen me himself instead of having his PA see me.. especially after being hospitalized after the first episode (there could have been more.. but I didn't know the symptoms I have were linked to MS) I do have a twin sister and she has been having symptoms that are similar to mine.. so this makes me more concerned... and I would like to be treated as soon as possible. I have been to the ER again since the first admission.. and as I said before the ER doctor came in and told me I DO have it.. the doctor is just confirming it thru other testing? I have been so depressed since hearing all this news, as my name states.. I am a single mother of 4 beautiful boys.. and it just worries me.. how I am going to care for them during these episodes, especially if I am hospitalized again (that is why I want to know now, and get treatment now.. I don't need this to happen again) They already have lost a part of their mommy, the active.. go anywhere.. do anything kind for fear I may inflict more pain on myself.. so I just sit it my home scared and try to do the best I can. I have already had to explain to them my medications for my neck injuries, so they understand why mommy is in pain and why I take medicine. Now, I fear I may have to explain the injections (their father is a herion addict and has been incarcerated multiple times.. this time for 5 yrs.. and they only know of needles for illegal drugs.. like their father uses) Thank you again for your support.. sorry for just spewing some stuff out, I just really have no-one else to talk to about my illness (s) because my family is close minded and believes I can deal with my pain with some tylenol or motrin... anyone who takes pain medicine on a daily basis is an addict in their eyes. I have to lie about my visits to pain management and tell them I am going to physical therapy, or the store etc. I have never had a problem with drugs, alcohol..anything! But they were addicts while I was growing up, so I believe that is where this all comes from. Thanks for listening.. you guys are wonderful. Yolanda
THE ABOVE HAVE GIVEN YOU GREAT ADVICE.
WELCOME TO OUR CYBER FAMILY.
I WAS DIAGNOSED IN 1998 AFTER A LUMBAR SURGERY WITH IMPLANTS,YOU ASK WHY THIS DIDN'T COME OUT SOONER,WELL SOMETIMES IT CAN TAKE A STRESSOR ON THE BODY FOR IT TO MANIFEST ITSELF.
THESE ARE QUESTIONS FOR THE MS SPECIALIST.
PLEASE KEEP US POSTED,THIS IS A GREAT GROUP HERE.
T-LYNN
WELCOME TO OUR CYBER FAMILY.
I WAS DIAGNOSED IN 1998 AFTER A LUMBAR SURGERY WITH IMPLANTS,YOU ASK WHY THIS DIDN'T COME OUT SOONER,WELL SOMETIMES IT CAN TAKE A STRESSOR ON THE BODY FOR IT TO MANIFEST ITSELF.
THESE ARE QUESTIONS FOR THE MS SPECIALIST.
PLEASE KEEP US POSTED,THIS IS A GREAT GROUP HERE.
T-LYNN
Hello and Welcome to our Forum! I am so sorry for all of the pain and suffering you have been dealing with lately and I hope that we can get you on the road to a diagnosis for your symptoms.
I have to start off by saying that we are not physicians and we cannot diagnose any symptoms but we will try to point you in the right direction to ensure that you are getting the help you need ok?
I have to say that I agree with the first neurologists office sending you to see an MS Specialist. The reason why I say that is because unlike a neurologist, an MS Specialist is trained to look for the lesions that would indicate MS and they have the experience that a neurologist or radiologist do not to ensure that you are getting the tests that are required to diagnose MS.
Has this MS Specialist ordered a new MRI? What other sort of tests has he ordered? Has this MS Specialist gotten a complete history from you? Has this MS Specialist done a complete in-office examination of you? This examination is very important in the outcome of a possible MS diagnosis and it is imperative that this test is done. The test should last at least 30 minutes and it will tell the MS Specialist about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. If this test has not been done you need to ask the MS specialist why not?
Please remember snglmother that being pro-active is also very important and that is also why this information is so important...if you didn't have the information you wouldn't be able to ask why things are not being done!
You said that your LP results were inconclusive and I would think that the MS Specialist will find out as to why this was the result. If a second LP is required, if it was me, I would go for it to ensure that I was covering all my bases. The fluid that is removed during an LP is also tested for other diseases and I think that ruling other things out all at once is a rather simple way to do it.
There is another set of tests that can be done as well should the previous tests not conclude to a solid diagnosis...Evoked Potential testing whereby sensors are put on different areas of the body to measure nerve response to stimuli.
snglmother, even if you are not diagnosed with MS at this time, a good MS Specialist that has had good reason to suspect the possibility of MS will follow up with you every 3 to 6 months to ensure no changes in your situation. This can carry on for many years.
I hope that I have been a little help to you...I can see that you are feeling very frustrated and a little confused and I can understand where you are coming from! To come out of a surgery such as you did to be faced with the possibility of a diagnosis of MS is a HUGE step to make!
Please know that we are here to support you in any way that we can. We have a good bunch of people here and if you need to vent, rage, laugh, whatever, we are here 24/7 and will get back to you as soon as we can.
I hope that you will stay with us and let us know how you are making out...we care about what you are going through and we want to help.
Take Care and Lots of Hugs,
Rena
I have to start off by saying that we are not physicians and we cannot diagnose any symptoms but we will try to point you in the right direction to ensure that you are getting the help you need ok?
I have to say that I agree with the first neurologists office sending you to see an MS Specialist. The reason why I say that is because unlike a neurologist, an MS Specialist is trained to look for the lesions that would indicate MS and they have the experience that a neurologist or radiologist do not to ensure that you are getting the tests that are required to diagnose MS.
Has this MS Specialist ordered a new MRI? What other sort of tests has he ordered? Has this MS Specialist gotten a complete history from you? Has this MS Specialist done a complete in-office examination of you? This examination is very important in the outcome of a possible MS diagnosis and it is imperative that this test is done. The test should last at least 30 minutes and it will tell the MS Specialist about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. If this test has not been done you need to ask the MS specialist why not?
Please remember snglmother that being pro-active is also very important and that is also why this information is so important...if you didn't have the information you wouldn't be able to ask why things are not being done!
You said that your LP results were inconclusive and I would think that the MS Specialist will find out as to why this was the result. If a second LP is required, if it was me, I would go for it to ensure that I was covering all my bases. The fluid that is removed during an LP is also tested for other diseases and I think that ruling other things out all at once is a rather simple way to do it.
There is another set of tests that can be done as well should the previous tests not conclude to a solid diagnosis...Evoked Potential testing whereby sensors are put on different areas of the body to measure nerve response to stimuli.
snglmother, even if you are not diagnosed with MS at this time, a good MS Specialist that has had good reason to suspect the possibility of MS will follow up with you every 3 to 6 months to ensure no changes in your situation. This can carry on for many years.
I hope that I have been a little help to you...I can see that you are feeling very frustrated and a little confused and I can understand where you are coming from! To come out of a surgery such as you did to be faced with the possibility of a diagnosis of MS is a HUGE step to make!
Please know that we are here to support you in any way that we can. We have a good bunch of people here and if you need to vent, rage, laugh, whatever, we are here 24/7 and will get back to you as soon as we can.
I hope that you will stay with us and let us know how you are making out...we care about what you are going through and we want to help.
Take Care and Lots of Hugs,
Rena
Welcome to the forum. I am undiagnosed myself at this time and probably not much good for giving advice, but I think you need to follow through with this. It is possible that MS could be causing some of the problems as well as your other issues. It does sound though that the one Neuro is concerned about it and I think that you need to see where this goes.
As Kitt said, I too know that others will come on who know more and will be able to assist you better. I just wanted to say welcome and that you found a good place to come. There are some incredible people here who are so supportive and will help you through this.
Hugs
Moki
As Kitt said, I too know that others will come on who know more and will be able to assist you better. I just wanted to say welcome and that you found a good place to come. There are some incredible people here who are so supportive and will help you through this.
Hugs
Moki
WELCOME,
BOY YOU MUST BE CONFUSED.
I AM ALSO TO GO FOR MY DISKS, BUT I CHICKENED OUT.
I CAN NOT SAY IF IT IS FROM YOUR OPERATION
OR NOT. I HOPE YOU GET THE ANSWERS SOON.
GLAD YOU ARE HERE WITH US, SOMEONE WILL
HELP YOU HERE, I AM SURE. THEY HAVE HELPED
ME ALOT. GOOD LUCK AND GOOD BLESS
KITT
BOY YOU MUST BE CONFUSED.
I AM ALSO TO GO FOR MY DISKS, BUT I CHICKENED OUT.
I CAN NOT SAY IF IT IS FROM YOUR OPERATION
OR NOT. I HOPE YOU GET THE ANSWERS SOON.
GLAD YOU ARE HERE WITH US, SOMEONE WILL
HELP YOU HERE, I AM SURE. THEY HAVE HELPED
ME ALOT. GOOD LUCK AND GOOD BLESS
KITT
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