Aa
What can I throw at the doctor??
Ok, not physically but mentally? This is the homework assignment for the weekend! I don't have all the answers and I am going to need them before my appointment on the 6th.
I was told by the neuro at my appointment in December that she will not be seeing me on a regular basis, I will have to deal with my g.p. (p.c.p.). I figure ok but I hope that my g.p. is prepared to be bombarded this time!
What I want to know is, what has my neuro missed as far as testing is concerned? I have had 2 MRI which confirm numerous lesions on my brain, the last one being in November of 2007. I have had an LP in 1993 which confirmed oglioclonal banding...the MS diagnosis was confirmed at that time. I have had numerous thorough in-office neurological examinations the latest being in November 2007.
My Neurologist has stated that she does not feel that I have had an MS relapse despite the neuropathic pain, muscle spasms, heat sensitivity, parasthesia, dysphagia, severe vertical double vision, balance issues, deteriorating eyesight, memory issues and a diagnosis of Paratrigeminal Neuralgia. However, she has also not come up with any other reason for these symptoms other than perhaps I was overmedicated by my last neurologist. This is why she will not give me the DMD's that I feel I have every right to have to slow the progression of the disease!
My g.p. has since lowered my dosage of meds and I am feeling better. However, I was not on the high dose of meds when these symptoms occured. I am feeling less like I am living in a fog since the meds have been decreased however, the pain in my temple and the ptosis has increased due to the decrease in my meds. I have also had increased neuropathic pain in my legs and heels but I am only going into my 3rd week of decreased meds so I will give it more time.
Can someone explain to me what an evoked response test is? I also believe that there are a few other tests that I have not had and I can't remember the name of that may help me out? As I said, I need to have all my ducks in a row prior to going to see my g.p. as she always lets us know that she is stretched for time and only has a few minutes to see me! (makes me sick, why keep taking on new patients then if you can't look after the ones you have!)
Any information on these other tests would be GREATLY appreciated my friends and I am looking forward to hearing what you have to say! I know sometimes we all sound like a broken record with our posts but sometimes our questions have been answered in another post but it was the other answer we were looking for! Hope that wasn't too confusing! ha ha ha
Just plain old Hugs!
Rena705
I was told by the neuro at my appointment in December that she will not be seeing me on a regular basis, I will have to deal with my g.p. (p.c.p.). I figure ok but I hope that my g.p. is prepared to be bombarded this time!
What I want to know is, what has my neuro missed as far as testing is concerned? I have had 2 MRI which confirm numerous lesions on my brain, the last one being in November of 2007. I have had an LP in 1993 which confirmed oglioclonal banding...the MS diagnosis was confirmed at that time. I have had numerous thorough in-office neurological examinations the latest being in November 2007.
My Neurologist has stated that she does not feel that I have had an MS relapse despite the neuropathic pain, muscle spasms, heat sensitivity, parasthesia, dysphagia, severe vertical double vision, balance issues, deteriorating eyesight, memory issues and a diagnosis of Paratrigeminal Neuralgia. However, she has also not come up with any other reason for these symptoms other than perhaps I was overmedicated by my last neurologist. This is why she will not give me the DMD's that I feel I have every right to have to slow the progression of the disease!
My g.p. has since lowered my dosage of meds and I am feeling better. However, I was not on the high dose of meds when these symptoms occured. I am feeling less like I am living in a fog since the meds have been decreased however, the pain in my temple and the ptosis has increased due to the decrease in my meds. I have also had increased neuropathic pain in my legs and heels but I am only going into my 3rd week of decreased meds so I will give it more time.
Can someone explain to me what an evoked response test is? I also believe that there are a few other tests that I have not had and I can't remember the name of that may help me out? As I said, I need to have all my ducks in a row prior to going to see my g.p. as she always lets us know that she is stretched for time and only has a few minutes to see me! (makes me sick, why keep taking on new patients then if you can't look after the ones you have!)
Any information on these other tests would be GREATLY appreciated my friends and I am looking forward to hearing what you have to say! I know sometimes we all sound like a broken record with our posts but sometimes our questions have been answered in another post but it was the other answer we were looking for! Hope that wasn't too confusing! ha ha ha
Just plain old Hugs!
Rena705
Thank you all for responding to my questions! Unfortunately, getting a new g.p. is virtually impossible in Alberta right now...due to the large influx of people coming to the province for work, we have NO EXTRA's around and it is extremely frustrating for all involved. Basically the message is don't get sick cause if you do you are screwed!
I am on my second neurologist now and she is an MS specialist but she doesn't seem to want to admit that I had a relapse and like Quix said she is looking for something else to blame my symptoms on. However, I am not going to settle with this attitude and trust me, this is not the end of it. I need the DMD's and I not taking no for an answer!
Thank you for explaining the evoked potential tests and what they conclude but as Quix said, new testing would probably do nothing to prove my point to her, I have MS, have had no new lesions, the neuro only sees that I have no new lesions, therefore she thinks I have not had a relapse.
Quix...as I have said before that even the criteria that has to be met in order that the government will pay for the DMD's doesn't matter as my insurance company has no criteria to follow and they will pay for the meds 100%. I am going to see if I and my husband can get the g.p. to see this for what it is...I am stuck with neurologist that is as you say "stuck in the world of counting lesions and counting relapses before she will offer treatment" and this is what I need my g.p. to know. This could be rather difficult as while I don't believe that my g.p. is wishy-washy but I don't believe that she knows sweet tweet about MS and that could be my downfall. If I asked her ANY questions about anything I am having problems with in the past, she would tell me to ask my neurologist even if it really had nothing to do with MS as far as I was concerned.
Quix, I would really appreciate it if you could send me that McDonald Criteria...I can then add it to me arsenal that I will be taking to my g.p. and every little extra bit of ammunition can't hurt right? (chairs excluded I guess)
Thanks again for all of your help and if you think of anything extra I can take to my appt. on Feb. 6th, please let me know...I truly do appreciate all the knowledge that you have shared with me and I will continue to soak it up as long as you keep pouring it on!
Lots and Lots and Lots of Hugs,
Rena705
I am on my second neurologist now and she is an MS specialist but she doesn't seem to want to admit that I had a relapse and like Quix said she is looking for something else to blame my symptoms on. However, I am not going to settle with this attitude and trust me, this is not the end of it. I need the DMD's and I not taking no for an answer!
Thank you for explaining the evoked potential tests and what they conclude but as Quix said, new testing would probably do nothing to prove my point to her, I have MS, have had no new lesions, the neuro only sees that I have no new lesions, therefore she thinks I have not had a relapse.
Quix...as I have said before that even the criteria that has to be met in order that the government will pay for the DMD's doesn't matter as my insurance company has no criteria to follow and they will pay for the meds 100%. I am going to see if I and my husband can get the g.p. to see this for what it is...I am stuck with neurologist that is as you say "stuck in the world of counting lesions and counting relapses before she will offer treatment" and this is what I need my g.p. to know. This could be rather difficult as while I don't believe that my g.p. is wishy-washy but I don't believe that she knows sweet tweet about MS and that could be my downfall. If I asked her ANY questions about anything I am having problems with in the past, she would tell me to ask my neurologist even if it really had nothing to do with MS as far as I was concerned.
Quix, I would really appreciate it if you could send me that McDonald Criteria...I can then add it to me arsenal that I will be taking to my g.p. and every little extra bit of ammunition can't hurt right? (chairs excluded I guess)
Thanks again for all of your help and if you think of anything extra I can take to my appt. on Feb. 6th, please let me know...I truly do appreciate all the knowledge that you have shared with me and I will continue to soak it up as long as you keep pouring it on!
Lots and Lots and Lots of Hugs,
Rena705
Well, I'd take that chair that Carol threw through the window and aim it directly at the neuro!
Isn't she the one that would only see you in the emergency if you transferred care to her and swore that you wouldn't see someone else? She has an ego the size of Everest, but, actually knows that she is sub-par and cannot tolerate a 2nd opinion. This is a very dangerous combination as you found out already. I do not think there is anything that you could say or show to her that would "teach" her anything.
New testing would not prove your point to her. If a new test showed additional evidence of MS, she would still probably deny that it indicated a relapse. I suspect that she ONLY diagnoses a relapse when the MRI shows enhancement. She is fixated on a false set of rules for following and treating MS. She is a stupid "lesion-counter" and stuck on herself, to boot! You have a Dodo-Doc!
The McDonald Critieria - which are accepted the world over for the diagnosis of MS, with some revisions in the last couple years - define a "relapse" by its clinical signs and symptoms. They make no mention of the need for an enhancing lesion to call a relapse. It is true that evidence of new inflammation does provide "support" that a person is having a relapse, but it IS NOT NECESSARY. The fact that you are having new neurological symptoms indicates you are in a relapse. Period. She really is a booby.
But, that is the secondary issue here. That's why she's working you up for something else!!!???????? ?????
At issue, is that she is stuck in the very old requirement that you must have 2 or 3 relapses before she will treat you with DMD's. She is rejecting the Consensus of the experts in the field in your own country that, having made the diagnosis of MS, you need to be on meds to slow it down. You don't NEED to be in another relapse to be on the meds!! It's irrelevant!
Do you think you can get the GP to see this? If so, take all the info, and some other people with you, preferably men, and pound this point across. You desperately need a new neuro. I don't know about the GP. I don't have a feeling for how wishy-washy she is. I think you need other people in the visit with the GP to demand her attention and to get her to see how important this really is.
Do you want a copy of the McDonald Criteria? I'm so frustrated for you!
Quix
Isn't she the one that would only see you in the emergency if you transferred care to her and swore that you wouldn't see someone else? She has an ego the size of Everest, but, actually knows that she is sub-par and cannot tolerate a 2nd opinion. This is a very dangerous combination as you found out already. I do not think there is anything that you could say or show to her that would "teach" her anything.
New testing would not prove your point to her. If a new test showed additional evidence of MS, she would still probably deny that it indicated a relapse. I suspect that she ONLY diagnoses a relapse when the MRI shows enhancement. She is fixated on a false set of rules for following and treating MS. She is a stupid "lesion-counter" and stuck on herself, to boot! You have a Dodo-Doc!
The McDonald Critieria - which are accepted the world over for the diagnosis of MS, with some revisions in the last couple years - define a "relapse" by its clinical signs and symptoms. They make no mention of the need for an enhancing lesion to call a relapse. It is true that evidence of new inflammation does provide "support" that a person is having a relapse, but it IS NOT NECESSARY. The fact that you are having new neurological symptoms indicates you are in a relapse. Period. She really is a booby.
But, that is the secondary issue here. That's why she's working you up for something else!!!???????? ?????
At issue, is that she is stuck in the very old requirement that you must have 2 or 3 relapses before she will treat you with DMD's. She is rejecting the Consensus of the experts in the field in your own country that, having made the diagnosis of MS, you need to be on meds to slow it down. You don't NEED to be in another relapse to be on the meds!! It's irrelevant!
Do you think you can get the GP to see this? If so, take all the info, and some other people with you, preferably men, and pound this point across. You desperately need a new neuro. I don't know about the GP. I don't have a feeling for how wishy-washy she is. I think you need other people in the visit with the GP to demand her attention and to get her to see how important this really is.
Do you want a copy of the McDonald Criteria? I'm so frustrated for you!
Quix
I COULD THINK OF MANY THINGS TO HURL AT A DR. BUT SINCE YOU WANT MENTAL AND NOT PHYSICAL I'LL PLAY NICE.
OKAY EVOKED POTENTIALS THERES 3 1.VISUAL 2.SOMATOSENSORY(THIS ONE DETECTS IF THE BRAIN AND SPINAL TRACT IS CORRELATING TO THE LIMBS---IF NOT THEN IT WILL DETECT A DELAY IN RESPONSE) 3.BAER---THIS ONE IS THE BRAIN AUDITORY(THIS ONE DETECTS IS THERE IS A DELAYED IN THE EARS ,BRAIN STEM AND SO FORTH)
HAVE YOU HAD A EMG/NCS ---CHECKS FOR MUSCLE AND NERVE ABNORMALITIES.
I HAVE BRAIN FOG SO I DON'T RECALL IF YOU HAVE HAD A C-SPINE AND THORACIC MRI'S.
I'D PERSONALLY TELL THAT GP THAT YOU WANT TO START THE DMD AS YOU FEEL THIS IS MS RELATED AND THAT YA GOTTA BE A TEAM AND WORK TOGETHER AND THAT SHE NEEDS TO COORALATE WITH THE NEURO SO YOU ARE AL ON THE SAME PAGE.
IF THIS DOESN'T WORK AND SHE DOESN'T AGREE THEN START PHYSICALLY THROWING THINGS AT THE GP,CHAIRS,DISHES,SCAPALS MAY MAKE HER GET THE POINT.
T
OKAY EVOKED POTENTIALS THERES 3 1.VISUAL 2.SOMATOSENSORY(THIS ONE DETECTS IF THE BRAIN AND SPINAL TRACT IS CORRELATING TO THE LIMBS---IF NOT THEN IT WILL DETECT A DELAY IN RESPONSE) 3.BAER---THIS ONE IS THE BRAIN AUDITORY(THIS ONE DETECTS IS THERE IS A DELAYED IN THE EARS ,BRAIN STEM AND SO FORTH)
HAVE YOU HAD A EMG/NCS ---CHECKS FOR MUSCLE AND NERVE ABNORMALITIES.
I HAVE BRAIN FOG SO I DON'T RECALL IF YOU HAVE HAD A C-SPINE AND THORACIC MRI'S.
I'D PERSONALLY TELL THAT GP THAT YOU WANT TO START THE DMD AS YOU FEEL THIS IS MS RELATED AND THAT YA GOTTA BE A TEAM AND WORK TOGETHER AND THAT SHE NEEDS TO COORALATE WITH THE NEURO SO YOU ARE AL ON THE SAME PAGE.
IF THIS DOESN'T WORK AND SHE DOESN'T AGREE THEN START PHYSICALLY THROWING THINGS AT THE GP,CHAIRS,DISHES,SCAPALS MAY MAKE HER GET THE POINT.
T
I've always found that dishes, dishes are best for throwing.
Carol and Essie-- you girls cracked me up!
Zilla*
Carol and Essie-- you girls cracked me up!
Zilla*
If I may suggest: don't only get a new neuro, get one who **specializes** in MS!!
If time/distance allow that option for you........
Suzanne
If time/distance allow that option for you........
Suzanne
I would throw a chair from the nearest window, climb out, and run to a new neuro and a new GP as fast as I could go. In my case I would have to put my hot wheels in over drive but you get the picture.
Rena, you need to first find a new GP. Find someone that you feel comfortable with and who treats you like they care. Trust me they are out there. I've got a great one. Second, have your new GP set you up with a neuro. Chances are if you have a good GP they will know a good neuro. Just please, don't be unhappy with your health care workers. We go through way too much with our own problems to deal with them too.
I'm not sure I've read this before but are you diagnosed yet or no? Even without further testing I would think they would be diagnosing you with MS. Anyway I really hope that you will consider what I've said about new doctors.
I'll be praying,
Carol
Rena, you need to first find a new GP. Find someone that you feel comfortable with and who treats you like they care. Trust me they are out there. I've got a great one. Second, have your new GP set you up with a neuro. Chances are if you have a good GP they will know a good neuro. Just please, don't be unhappy with your health care workers. We go through way too much with our own problems to deal with them too.
I'm not sure I've read this before but are you diagnosed yet or no? Even without further testing I would think they would be diagnosing you with MS. Anyway I really hope that you will consider what I've said about new doctors.
I'll be praying,
Carol
Hi there. Evoked response is the same as evoked potentials. Quix has explained this recently, very succintly and understandably. If you can't find it, just Google evoked potentials.
I've been reading about all your travails with this impossible neuro for some time. I think you need to find a new neuro, and a new primary, ASAP. Is this workable??
ess
I've been reading about all your travails with this impossible neuro for some time. I think you need to find a new neuro, and a new primary, ASAP. Is this workable??
ess
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
