krbuerg
02-14-2009, 09:55 PM
Well, my brain MRI came back normal. I am on Cymbalta and have been since Christmas Eve. My next nuero appt is in April. With MS, do you usually have lesions on the brain and elsewhere? I know you can have an MRI of the spine, but not sure if you also have to see evidence on the brain in order to get the second one.
The cymbalta does not help the pain at all. Has anyone else been on this? I am dx with FM, but I have a hard time accepting this. I had seen a rheumatologist who ran blood work on autoimmune diseases and they all came back neg.
I am working on getting my records transferred to an MS clinic at the University for a second opinion. I have also started a daily journal, writing EVERYTHING I feel and when. My arms and legs hurt so bad!! I can handle the pins and needles, numbness, weakness-but the pain is unbearable at times.
And...do you have to "black out" with vision problems in order to be diagnosed?
Thank you for your time and expertise!
The cymbalta does not help the pain at all. Has anyone else been on this? I am dx with FM, but I have a hard time accepting this. I had seen a rheumatologist who ran blood work on autoimmune diseases and they all came back neg.
I am working on getting my records transferred to an MS clinic at the University for a second opinion. I have also started a daily journal, writing EVERYTHING I feel and when. My arms and legs hurt so bad!! I can handle the pins and needles, numbness, weakness-but the pain is unbearable at times.
And...do you have to "black out" with vision problems in order to be diagnosed?
Thank you for your time and expertise!
Sponsor
Carol72
02-14-2009, 10:11 PM
Yes, you can have lesions on your spine and NOT your brain and still have MS. Having lesions on both your spine and brain just makes for a more definitive (and probably quicker) diagnosis.
In your case, an LP may be helpful in leading you in the right direction. Although as I've learned here, not all patients with MS get a positive LP result.
In your case, an LP may be helpful in leading you in the right direction. Although as I've learned here, not all patients with MS get a positive LP result.
monkey5
02-15-2009, 08:54 PM
Carol, if i may ask what is LP?
Thanks! Monkey
Thanks! Monkey
Carol72
02-15-2009, 09:27 PM
LP = Lumbar Puncture (or spinal tap). It involves removing and testing spinal fluid.
praying4change
02-17-2009, 12:55 PM
Hi, my name is Amanda. I am new to this group. I have a question. Is it true that MS does not always show up in the spinal. The reason why I am wondering is because ever since May of 2003, I have been told I have possible MS. I even went to Shand's in Jacksonville, FL and they said I had definate MS because the lesions on my brain were multiplying and I was having flare-ups and remissions on my symptoms. They said the bear hug feeling around my chest when I have flare-ups was a trademark symptom of MS. They were gonna start me on Copaxone shots, but then my insurance cancelled so I had to go to a different dr. He ordered a optic nerve test and a spinal both of wich came up neg. so he said that means I didn't have it and there was nothing else they could do. I haven't been to a neurologist since 3 years ago. I have a 8 year old little boy and a 4 year old little girl. My little girl has seizures since she was 6 months and I always wonder if she got some neurological disease from me. I am stuck for answers. Thank you everyone. Amanda.
MSJayhawk
02-17-2009, 03:15 PM
Welcome to the board. You might wish to start your own thread, but I will try to help you here. Your trepidations regarding possible effects on your daughter are only natural and only a medical doctor should address your daughter's case objectively.
As to your doctor saying you never had MS, SEEK ANOTHER OPINION. Not all MS patients get a LP, of those who do get a LP, only 85% show a positive sign for MS. I have had MS for at least 30 years and my first LP was about 26.5 years ago. My first test was negative, 20 years later I was tested yet again and the result was, again, negative. Any doctor relying solely upon the LP for diagnosis is not properly diagnosing (in my opinion).
Nowadays neurologists have the McDonald Criteria to follow. There are many tests to assist the doctor in rendering a diagnosis. I would make an appointment with a different neurologist who has MS experience using the criteria and take you daughter with you. Her seizures could be related or could be something different. About 5% of MS patients have experienced seizures. I went through a period of seizures. Again, seek a different doctor. Contact your local MS society or association if you need assistance. :angel:
As to your doctor saying you never had MS, SEEK ANOTHER OPINION. Not all MS patients get a LP, of those who do get a LP, only 85% show a positive sign for MS. I have had MS for at least 30 years and my first LP was about 26.5 years ago. My first test was negative, 20 years later I was tested yet again and the result was, again, negative. Any doctor relying solely upon the LP for diagnosis is not properly diagnosing (in my opinion).
Nowadays neurologists have the McDonald Criteria to follow. There are many tests to assist the doctor in rendering a diagnosis. I would make an appointment with a different neurologist who has MS experience using the criteria and take you daughter with you. Her seizures could be related or could be something different. About 5% of MS patients have experienced seizures. I went through a period of seizures. Again, seek a different doctor. Contact your local MS society or association if you need assistance. :angel:
monkey5
02-17-2009, 06:09 PM
msjayhawk, i don't get this ithier, how can a Neurologist test your reflexex, do a physical exam and say for one your not in pain two , not to say you do or don't have MS? I don't have MS but yet have some symtoms and was told by a pshychiatrist that i should possibly have a brain scan a few months back, but i quite going because i got frustuarated and confused. And my dr. basically stated that because i saw one that was a specialist wich really wasn't and did no tests and was based on yet another observation nothing. It makes no sense!
monkey
monkey
monkey5
02-17-2009, 06:18 PM
Welcome to the board. You might wish to start your own thread, but I will try to help you here. Your trepidations regarding possible effects on your daughter are only natural and only a medical doctor should address your daughter's case objectively.
As to your doctor saying you never had MS, SEEK ANOTHER OPINION. Not all MS patients get a LP, of those who do get a LP, only 85% show a positive sign for MS. I have had MS for at least 30 years and my first LP was about 26.5 years ago. My first test was negative, 20 years later I was tested yet again and the result was, again, negative. Any doctor relying solely upon the LP for diagnosis is not properly diagnosing (in my opinion).
Nowadays neurologists have the McDonald Criteria to follow. There are many tests to assist the doctor in rendering a diagnosis. I would make an appointment with a different neurologist who has MS experience using the criteria and take you daughter with you. Her seizures could be related or could be something different. About 5% of MS patients have experienced seizures. I went through a period of seizures.
: Again, seek a different doctor. Contact your local MS society or association if you need assistance. :angel:
How do you do this if you need your md's referral?
monkey
As to your doctor saying you never had MS, SEEK ANOTHER OPINION. Not all MS patients get a LP, of those who do get a LP, only 85% show a positive sign for MS. I have had MS for at least 30 years and my first LP was about 26.5 years ago. My first test was negative, 20 years later I was tested yet again and the result was, again, negative. Any doctor relying solely upon the LP for diagnosis is not properly diagnosing (in my opinion).
Nowadays neurologists have the McDonald Criteria to follow. There are many tests to assist the doctor in rendering a diagnosis. I would make an appointment with a different neurologist who has MS experience using the criteria and take you daughter with you. Her seizures could be related or could be something different. About 5% of MS patients have experienced seizures. I went through a period of seizures.
: Again, seek a different doctor. Contact your local MS society or association if you need assistance. :angel:
How do you do this if you need your md's referral?
monkey
MSJayhawk
02-17-2009, 07:28 PM
It is your right to request a second opinion. Even if it requires a referral, ask for a second opinion. Give your doctor a list of names of MS doctors and request a referral to one of them. No doctor has a monopoly over your well being. You have to take charge.
monkey5
02-17-2009, 08:22 PM
jayhawk, thanks but tried that today and it failed, because she said i had a spine MRI, and that another Neurologist wasn't going to be any different than the one i saw in the past , so what does one say to that? I actually have saw two but i swear on my life that not one of them did not even the littlest of blood work or anything. all that ithier one of them did was look at my prior MRI's(two different ones of the same thing mind you) Just like i at one time was even able to seek a Rheumatologist on my own without a referral and he didn't do anything ithier just looked at prior MRI and did say that possible it was due to me having an extra vertabrea partially fused with my sacrum wich not one dr. says thats related ither:dizzy: I can believe someone on the pm thread has sorta tried to state i was a seeker for pain meds if that was the case i would have went back to him or stayed with him because he didn't have a problem giving me any pain meds but i don't want to be on them i want answers. I just hope me giving me my pm doc one more benifiet of the doubt that he will maybe send me to further testing for possible MS, spine related tests like he said itial visit and you bet i am going to hol him to his word!
take care, monkey
take care, monkey
monkey5
02-17-2009, 08:24 PM
oops! Sorry i think i replied to someone elses post. It gets confusing, sorry.monkey
praying4change
02-19-2009, 03:13 AM
Yeah, let me tell you. I don't know what is wrong with me. I have had so many dr.'s tell me different things. I will not use a certain dr. in Pensacola ever again-he scared me and my mom both by telling us I would most likely be dead or in a wheelchair in 5 years, but now look, here it is almost 6 years later and still alive and walking. I don't think a dr. should be able to say those type of things without a deffinate diagnosis.
I know I have always had panic attacks and depression and heart palpitations and all kind of sort- even my pupils dialate unevenly at some times. It's so weird. But I know that the main things started happening when me, my husband, and our kids moved into an old wooden house and all of us got really ill with breathing problems, fevers, and paralysis spells. When we all moved out, all them seemed to get better. I stayed ill. They said there was black mold in the house. I don't know. Just filled with confusion, like most the other people on this site. Thank you to everyone for reading this. Amanda.
I know I have always had panic attacks and depression and heart palpitations and all kind of sort- even my pupils dialate unevenly at some times. It's so weird. But I know that the main things started happening when me, my husband, and our kids moved into an old wooden house and all of us got really ill with breathing problems, fevers, and paralysis spells. When we all moved out, all them seemed to get better. I stayed ill. They said there was black mold in the house. I don't know. Just filled with confusion, like most the other people on this site. Thank you to everyone for reading this. Amanda.