bhmomof2
05-27-2009, 08:46 PM
I have posted once before on here, but with new test results I am even more lost. I had multiple leisons in the brain on an MRI, negative LP, negative evoked potential. Also blood test for something else came back normal.
I am actually feeling better than I have in a while. Still have problems with numbness and tingling but it is bearable. Stilll have pain at times but no sunburn feeling lately. ,I no longer walk oddly and the Provigil has helped my confusion and I am able to make it a while longer without being exhausted.
So I guess what I am asking is what do I have. My last neuro visit I asked her if not MS, then what? She said nothing else. But wants to continue treating me by my symptoms. She said you tell me what bothers you most and I will try and help. I am supposed to go back this summer but should I?
Is something wrong with me? Do I have MS? I feel so lost.
When friends and family ask me how are the results and I share they say is that good? Well I don't know the answer...can some one out there tell me. Please
I am actually feeling better than I have in a while. Still have problems with numbness and tingling but it is bearable. Stilll have pain at times but no sunburn feeling lately. ,I no longer walk oddly and the Provigil has helped my confusion and I am able to make it a while longer without being exhausted.
So I guess what I am asking is what do I have. My last neuro visit I asked her if not MS, then what? She said nothing else. But wants to continue treating me by my symptoms. She said you tell me what bothers you most and I will try and help. I am supposed to go back this summer but should I?
Is something wrong with me? Do I have MS? I feel so lost.
When friends and family ask me how are the results and I share they say is that good? Well I don't know the answer...can some one out there tell me. Please
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MSNik
05-27-2009, 09:39 PM
None of us unfortunately are going to be able to tell you if you have MS or any other disease. Im sorry. I feel your pain. However, what you describe certainly does sound MS like....
should you go back to the doctor this summer? Absolutely YES! And, if possible you should repeat your MRI to look for any changes. I have MS. I have many lesions on my brain. I have a normal LP and my Evoked potentials are not very conclusive. However, I have numbness, tingling, weakness on one side- many MS symtoms.....what it sounds like you need, more then anything is a second opinion OR a very clear answer on what is stopping your doc from giving you a diagnosis.
The mcDonald criteria is what is used to dx MS...you have most of it from your description; however it might take a separate episode for her to be sure, or it might take additional lesions on your MRI...whatever it is, Id want to know. Is your doctor an MS Specialist? Can you possibly find one for another opinon? They too, might want to give you 6 months to look for changes, but then again, maybe not...it might be something she is uncomfortable labeling you with for a reason.
Remember, once you get that dx, there is no going back. The drugs are very expensive, insurance companies will start watching everything you do and take--But at this point, youre either going to have to fight for a dx, or keep seeing docs until you get answers....you mentioned blood work...Im not sure what they were looking for, but if NOTHING showed up, thats another pointer towards MS...with MS, there is no blood test to confirm it, however, they use blood tests to confirm that it ISNT a deficiency, a thyroid problem or an infection.
It sounds like you are otherwise healthy...so, keep pushing. And, your not alone or crazy. Remember that!
Nikki
should you go back to the doctor this summer? Absolutely YES! And, if possible you should repeat your MRI to look for any changes. I have MS. I have many lesions on my brain. I have a normal LP and my Evoked potentials are not very conclusive. However, I have numbness, tingling, weakness on one side- many MS symtoms.....what it sounds like you need, more then anything is a second opinion OR a very clear answer on what is stopping your doc from giving you a diagnosis.
The mcDonald criteria is what is used to dx MS...you have most of it from your description; however it might take a separate episode for her to be sure, or it might take additional lesions on your MRI...whatever it is, Id want to know. Is your doctor an MS Specialist? Can you possibly find one for another opinon? They too, might want to give you 6 months to look for changes, but then again, maybe not...it might be something she is uncomfortable labeling you with for a reason.
Remember, once you get that dx, there is no going back. The drugs are very expensive, insurance companies will start watching everything you do and take--But at this point, youre either going to have to fight for a dx, or keep seeing docs until you get answers....you mentioned blood work...Im not sure what they were looking for, but if NOTHING showed up, thats another pointer towards MS...with MS, there is no blood test to confirm it, however, they use blood tests to confirm that it ISNT a deficiency, a thyroid problem or an infection.
It sounds like you are otherwise healthy...so, keep pushing. And, your not alone or crazy. Remember that!
Nikki
bhmomof2
05-27-2009, 09:57 PM
Thank you for replying Nikki. I have been sitting here with tears waiting for a reply. I am trying so hard to be strong. I keep telling my family I feel fine and that it's just mind over matter. My motto has been just keep acting healthy and you will feel healthy. It's not that I want a diagnosis of MS but I am so tired of putting on a smile and acting like I am okay. Even good days aren't as good as I pretend they are. Anyways, thanks.
Mel52
05-27-2009, 11:00 PM
BHmomof2, I can understand your frustration as I am in the same situation. Believe in yourself is the best advice I can give and don't give up in finding answers.
I was sick for 5 years not knowing what was wrong. Rashes, overwhelming fatigue, itching, brain fog, severe allergic reactions, inability to sleep etc etc. Drs patted me on the head, sent me on my way and one told me I was depressed. I responded with an answer if I were depressed, then I wouldn't care about trying to find out what is wrong, I would lay on the couch and eat bon-bons. Besides, do depressed people have fevers? That shut him up. It wasn't until the media broke the news about breast implant problems and I knew then I had an answer. I was right I had a rupture. I improved so much for almost 20 years until I was injured at work 4 years ago and so now I too am having undignosed problems. I wont give up either. So we can lean on each other and keep searching. Thankfully, there are wonderful people who have been down this road before us and are kind enough to share their knowledge. We'll be ok.
My family and friends know I am having issues. My husband is in remission with hemolytic anemia and he has had 4 hip replacement surgeries. We do the best we can. We have off days and we have good days. It is the reality of the situation. We do the best we can. If they can't understand it after we explained what we know, then it becomes their problem. It took alot of pressure off pretending to be just fine all the time.
I was sick for 5 years not knowing what was wrong. Rashes, overwhelming fatigue, itching, brain fog, severe allergic reactions, inability to sleep etc etc. Drs patted me on the head, sent me on my way and one told me I was depressed. I responded with an answer if I were depressed, then I wouldn't care about trying to find out what is wrong, I would lay on the couch and eat bon-bons. Besides, do depressed people have fevers? That shut him up. It wasn't until the media broke the news about breast implant problems and I knew then I had an answer. I was right I had a rupture. I improved so much for almost 20 years until I was injured at work 4 years ago and so now I too am having undignosed problems. I wont give up either. So we can lean on each other and keep searching. Thankfully, there are wonderful people who have been down this road before us and are kind enough to share their knowledge. We'll be ok.
My family and friends know I am having issues. My husband is in remission with hemolytic anemia and he has had 4 hip replacement surgeries. We do the best we can. We have off days and we have good days. It is the reality of the situation. We do the best we can. If they can't understand it after we explained what we know, then it becomes their problem. It took alot of pressure off pretending to be just fine all the time.
MSJayhawk
05-28-2009, 12:11 AM
When you are not feeling fine and you tell your family you are- you are hurting yourself. When you are hurting, tell your family you are hurting. Putting on a healthy facade does not deal with your personal pains. Everyone wants to see you get better.
I agree that thinking healthy helps you. You need not attend pity parties, but on days when you are "bummed-out", you need to take a rest and make sure your family knows that you cannot be Superwoman 100% of the time.
I hope you are able to achieve a diagnosis soon- whatever the diagnosis. In the meanwhile, you are in my prayers. :angel:
I agree that thinking healthy helps you. You need not attend pity parties, but on days when you are "bummed-out", you need to take a rest and make sure your family knows that you cannot be Superwoman 100% of the time.
I hope you are able to achieve a diagnosis soon- whatever the diagnosis. In the meanwhile, you are in my prayers. :angel:
MSNik
05-28-2009, 06:41 AM
Thank you for replying Nikki. I have been sitting here with tears waiting for a reply. I am trying so hard to be strong. I keep telling my family I feel fine and that it's just mind over matter. My motto has been just keep acting healthy and you will feel healthy. It's not that I want a diagnosis of MS but I am so tired of putting on a smile and acting like I am okay. Even good days aren't as good as I pretend they are. Anyways, thanks.
Honey, dont sit there with tears. Its not going to do you any good! If you are feeling this overwhelmed, its time to talk to your doctor about possibly trying some anti-anxiety drugs. I know in the beginning of my dx, I was taking Xanax whenever the tears started! I only used it for a short time, but it did help me.
Keeping it in isnt healthy, but also dwelling on it and repeatedly having a "poor me" party isnt either. Talking to your family is important, but they arent going to understand. You dont have a dx! I know that. What you should be able to say to your family is "I am having an off day. I dont feel well. Im going to go lay down, read a book, take a walk, pet the cat". Whatever it is you do....Then, you need to be able to depend on your family to understand that you need some "you time" and they need to be ok with that. If you go the other route and continuously cry about this to them, not only will they get frustrated because they cant help you, but they will also stop knowing when its time to really be afraid for you.
You need to keep in mind that MS is not a death sentence and your life isnt going to change all that much....for some of us, its a wake up call; a warning to slow down and listen to our bodies- but none of us are out here falling apart because we have MS.
What you have is a serious case of limbo land and all the frustration that goes along with it. You need to find a support group (hello!!) maybe in person so you have others to talk to, but also US- we are always around! And, you need to talk to your doctor about possibly starting some anti anxiety for awhile...not depression, anxiety!! IT will help you get over the hump!
Please keep us posted on how you are doing...and seriously think about a second opinion.
Hugs
Nikki
Honey, dont sit there with tears. Its not going to do you any good! If you are feeling this overwhelmed, its time to talk to your doctor about possibly trying some anti-anxiety drugs. I know in the beginning of my dx, I was taking Xanax whenever the tears started! I only used it for a short time, but it did help me.
Keeping it in isnt healthy, but also dwelling on it and repeatedly having a "poor me" party isnt either. Talking to your family is important, but they arent going to understand. You dont have a dx! I know that. What you should be able to say to your family is "I am having an off day. I dont feel well. Im going to go lay down, read a book, take a walk, pet the cat". Whatever it is you do....Then, you need to be able to depend on your family to understand that you need some "you time" and they need to be ok with that. If you go the other route and continuously cry about this to them, not only will they get frustrated because they cant help you, but they will also stop knowing when its time to really be afraid for you.
You need to keep in mind that MS is not a death sentence and your life isnt going to change all that much....for some of us, its a wake up call; a warning to slow down and listen to our bodies- but none of us are out here falling apart because we have MS.
What you have is a serious case of limbo land and all the frustration that goes along with it. You need to find a support group (hello!!) maybe in person so you have others to talk to, but also US- we are always around! And, you need to talk to your doctor about possibly starting some anti anxiety for awhile...not depression, anxiety!! IT will help you get over the hump!
Please keep us posted on how you are doing...and seriously think about a second opinion.
Hugs
Nikki
bhmomof2
05-28-2009, 09:08 AM
Thank you all for your support. I was really feeling overwhelmed last night, but today is a new day. This "limboland" is so hard. I am always the care giver in our family and tend to take control. Give a problem and I will fix it! But with this it is so hard. When the doc first suspected MS (blindsiding me), I began reading up and trying to come up with the game plan. Now with the negative LP and negative VEP I am not sure what I am fighting.
I am going to make my summer appt. with the neuro today. I was feeling like whats the point, but I know I need to keep following through with this. I will ask her if she is a MS specialist. She has been very willing to support me, I guess I am just asking for the impossible at this point.
I have tried Lexapro for anxiety a while back. My primary doc thought maybe some of the problems I have with speech and memory could be stress related. It didn't help. I still tend to stutter over words or even say the wrong things, but I have noticed that it is mostly when I am tired. The provigil has helped more than anything with this.
Yesterday was exhausting but I am ready for today. Thanks you guys. It helps having others who understand. My family is very supportive, I am just not good at admitting I need anything. It was easier last night to complain to faceless people that don't see my weakness. I am sure this won't be the last post from me. Again...THANKS!
I am going to make my summer appt. with the neuro today. I was feeling like whats the point, but I know I need to keep following through with this. I will ask her if she is a MS specialist. She has been very willing to support me, I guess I am just asking for the impossible at this point.
I have tried Lexapro for anxiety a while back. My primary doc thought maybe some of the problems I have with speech and memory could be stress related. It didn't help. I still tend to stutter over words or even say the wrong things, but I have noticed that it is mostly when I am tired. The provigil has helped more than anything with this.
Yesterday was exhausting but I am ready for today. Thanks you guys. It helps having others who understand. My family is very supportive, I am just not good at admitting I need anything. It was easier last night to complain to faceless people that don't see my weakness. I am sure this won't be the last post from me. Again...THANKS!
MSJayhawk
05-28-2009, 11:25 AM
When I stutter or slur words, I know I need to rest my mind and body. Under duress or when physically or mentally tired, I will start to stutter and slur words.
Being a care giver is admirable, but you need to let care givers give to you as well. It is hard to delegate responsibilities and duties when they have been our domain, but if you have MS or some other malady, you will need to delegate in order to remain rested and as healthy as you can be. Remember, you can start out by delegating a small percentage and then increase as needed. This way you remain independent and a contributing member of your family. :angel:
Being a care giver is admirable, but you need to let care givers give to you as well. It is hard to delegate responsibilities and duties when they have been our domain, but if you have MS or some other malady, you will need to delegate in order to remain rested and as healthy as you can be. Remember, you can start out by delegating a small percentage and then increase as needed. This way you remain independent and a contributing member of your family. :angel:
SPECIALFX
05-28-2009, 03:08 PM
Thank you for replying Nikki. I have been sitting here with tears waiting for a reply. I am trying so hard to be strong. I keep telling my family I feel fine and that it's just mind over matter. My motto has been just keep acting healthy and you will feel healthy. It's not that I want a diagnosis of MS but I am so tired of putting on a smile and acting like I am okay. Even good days aren't as good as I pretend they are. Anyways, thanks.
My good friend who was diagnosed with MS was greatly helped through some education. The education, was gleaned from a biochemistry textbook called Harper's Biochemistry. Very few MDs in practice are familiar with this information, yet it is certified as continuing medical education. If you seek out a doctor's advice make sure they are fluent in this -- because it could make all the difference in the world. * Instructions regarding locating commercial website removed by hb-mod, moderator *
Between this information and identification of various responses to toxins in the enviornment and food, most people, I believe, can rescue themselves from neurodegenerative auto-immune problems. To learn more you can also feel free to email me at * email address removed by hb-mod, moderator * . Nobody should suffer for a lack of information....in the information age.
My good friend who was diagnosed with MS was greatly helped through some education. The education, was gleaned from a biochemistry textbook called Harper's Biochemistry. Very few MDs in practice are familiar with this information, yet it is certified as continuing medical education. If you seek out a doctor's advice make sure they are fluent in this -- because it could make all the difference in the world. * Instructions regarding locating commercial website removed by hb-mod, moderator *
Between this information and identification of various responses to toxins in the enviornment and food, most people, I believe, can rescue themselves from neurodegenerative auto-immune problems. To learn more you can also feel free to email me at * email address removed by hb-mod, moderator * . Nobody should suffer for a lack of information....in the information age.
SPECIALFX
05-29-2009, 03:09 AM
My good friend who was diagnosed with MS was greatly helped through some education. The education, was gleaned from a biochemistry textbook called Harper's Biochemistry. Very few MDs in practice are familiar with this information, yet it is certified as continuing medical education. If you seek out a doctor's advice make sure they are fluent in this -- because it could make all the difference in the world. * Instructions regarding locating commercial website removed by hb-mod, moderator *
Between this information and identification of various responses to toxins in the enviornment and food, most people, I believe, can rescue themselves from neurodegenerative auto-immune problems. To learn more you can also feel free to email me at * email address removed by hb-mod, moderator * . Nobody should suffer for a lack of information....in the information age.
I'm still getting the hang of the rules in this forum so I'll try to do it right this time and hope I don't get censored. The chapter in Harper's is the one on glycobiology and the contuing medical education course is hosted by Proevity.
I encourage all doctors to seek out and take this course.
Between this information and identification of various responses to toxins in the enviornment and food, most people, I believe, can rescue themselves from neurodegenerative auto-immune problems. To learn more you can also feel free to email me at * email address removed by hb-mod, moderator * . Nobody should suffer for a lack of information....in the information age.
I'm still getting the hang of the rules in this forum so I'll try to do it right this time and hope I don't get censored. The chapter in Harper's is the one on glycobiology and the contuing medical education course is hosted by Proevity.
I encourage all doctors to seek out and take this course.