Aa
Should've listened to medhelpers
I went in to my 2nd neuro and a couple of you suggested I just stick with doc1 and wait it out.
This doc was a doozy: he told me ms didn't cause pain, that one of my two lesions was small, thus he wouldn't count it, and since my symptoms aren't only on one side, although still at the top of the list, ms usually doesn't cause symptoms in varied parts of the body.
I had balance issues again and decreased sensation on one side. He said I need permanent neuro deficits, whatever that means. He suspects I have lesions on my spine and ordered an mri but I'm just waking for the neuro I like...patience, it's something I need more of.
This doc was a doozy: he told me ms didn't cause pain, that one of my two lesions was small, thus he wouldn't count it, and since my symptoms aren't only on one side, although still at the top of the list, ms usually doesn't cause symptoms in varied parts of the body.
I had balance issues again and decreased sensation on one side. He said I need permanent neuro deficits, whatever that means. He suspects I have lesions on my spine and ordered an mri but I'm just waking for the neuro I like...patience, it's something I need more of.
I agree--if the person is genuine it makes all the difference. I have lupus, and if someone genuinely has a question about it, I will go out of my way to answer them--but if it is one of the work gossip boxes, I just shut down--which, unfortunately, probably makes them even more interested.
Thank you :) He and I have a very good working relationship and he is a nice guy. I didn't want to risk ruining that. There are certain people at work who are very nosy, especially about health related things. I don't want him to think I am one of them. Hopefully he knows me well enough to know I'm not that kind of person.
I would not be offended at all,, lilminnie. He probably gets how important a good neuro is. I'd ask.
I'm sticking with neuo1: I liked him a lot, I just didn't care for being left hanging with my lp results. I will see him on the 28th when he is back, and I am going to ask him if he still suspects ms or if my negative lp test makes him think otherwise. He is very well liked by many....I was just impatient and wanted to know if I had ms or not, I still want to know!
I think nuero1 will want a spinal MRI as nuero 2 (the "peach" as doublevision said :) suspects I have spinal lesions. I have an abnormal gait according to neuro 2 and parasthesia.
I'm sticking with neuo1: I liked him a lot, I just didn't care for being left hanging with my lp results. I will see him on the 28th when he is back, and I am going to ask him if he still suspects ms or if my negative lp test makes him think otherwise. He is very well liked by many....I was just impatient and wanted to know if I had ms or not, I still want to know!
I think nuero1 will want a spinal MRI as nuero 2 (the "peach" as doublevision said :) suspects I have spinal lesions. I have an abnormal gait according to neuro 2 and parasthesia.
Oh yes, I am definitely going to use the patient rating sites next time. I will have a follow up with Dr. Dufus after my MRIs and EMG and then look for someone else. I guess neurologists are like our first (or even fiftieth) boyfriends... we rarely end up being with them forever!
There is a gentleman at work who has MS. I have considered approaching him and asking where he goes. I just don't want to offend him or make him uncomfortable. What do you all think? Would any of you be offended if someone were to ask you?
Hugs,
Minnie :)
There is a gentleman at work who has MS. I have considered approaching him and asking where he goes. I just don't want to offend him or make him uncomfortable. What do you all think? Would any of you be offended if someone were to ask you?
Hugs,
Minnie :)
Well the good news, if we all listen to Ahabkara's new neurologist.. none of us have MS... yeah, party at my house... :)
Maybe its time for doctor number 3.... have you checked into patient ratings online for the doctor you went to? Use the various doctor rating sites. And post here where you are, someone might be close to you and have a suggestion for a wonderful neuro that can help.
I know 'wonderful neuro' seems like a conflict, but they do exist... don't give up, keep pushing forward... remember lots of toads out there, sometimes you gotta kiss a few to find one worth keeping... apparently this goes for husbands and neuros :)
Jen
COMMUNITY LEADER
ahh the neuro comes from "there is no pain in MS" school of medicine, same school who also taught no cognitive issues in MS, and there is no MS hug, hmmmm i wonder if its the same school that taught females are delicate, hysterical little creatures. lol My neuro said with a straight face mind you, that my double vision, nystagmus etc well that "vision had nothing to do with MS", I'd already had enough of him 5minutes into the appt.
lol My opinion of him didn't change after he let me fall twice and repeatedly tested my left leg (clonus) over and over, um he even had the cheek to keep telling me "to stop doing that" when my leg kept being abnormal. Dufus could even see the reactive muscle response, muscles from anckle to groin spasmed one after the other, it was like being tazerd, errr like i could ever stop that if i wanted, dufus!
The last straw was the brilliant response he gave when i asked him about tremors, since he'd just said vision had nothing to do with MS, i knew it could be anything but his "anyone can shake their hand" had me grabbing my coat and bitting my tongue. Dufus!! All i need do is just stop stabbing my self in the face, poking people in the eye and throwing what ever's in my hand at people and i'll be apples lol!
What ever you do, dont let the dufuses of the world get you down!
Hugs............JJ
lol My opinion of him didn't change after he let me fall twice and repeatedly tested my left leg (clonus) over and over, um he even had the cheek to keep telling me "to stop doing that" when my leg kept being abnormal. Dufus could even see the reactive muscle response, muscles from anckle to groin spasmed one after the other, it was like being tazerd, errr like i could ever stop that if i wanted, dufus!
The last straw was the brilliant response he gave when i asked him about tremors, since he'd just said vision had nothing to do with MS, i knew it could be anything but his "anyone can shake their hand" had me grabbing my coat and bitting my tongue. Dufus!! All i need do is just stop stabbing my self in the face, poking people in the eye and throwing what ever's in my hand at people and i'll be apples lol!
What ever you do, dont let the dufuses of the world get you down!
Hugs............JJ
My first major flare was 6 years ago and was simply on the lower half of my body. My last one was left side only. Not only is each person different, but so is each episode. I'm sorry you had such a bad experience!
Chris
Chris
That neuro sounds like a real peach. Perhaps he's one of those who thinks Montel has no pain at all and uses his MS as an excuse to smoke pot. His comment was unprofessional and just dumb. He apparently doesn't stay abreast of the medical literature, as pain is a well established symptom in MS.
When a doctor says something assinine like that to me, I will, if I'm really on my toes, ask them if they could point me to the literature on that topic. However I think I would have been momentarily speechless at the Montel comment. I love your husband's reponse! I actually told my husband he doesn't have to accompany me to appts anymore because he sounds a lot like your husband, lol. At my first appt with my neuro when he dx'ed me, he said something about not assuming now that everything that goes wrong is necessarily due to MS, I suppose they probably see that a lot, especially in the newly dx'ed when we're freaking out about every little strange sensation and ache, pain and twitch and we're not sure what to expect. The remark made sense to me and I didn't take offense. But my husband pipes up and says in the snottiest tone of voice "yeah, don't worry Buddy, she won't call to bother you if she has the sniffles" or something along those lines. I shot him the look of death though my eyes were uneven from diplopia so he didn't even notice. I think that's their protective instinct kicking in to support us when we're at our most vulnerable and they perceive someone as patronizining or making light of our serious concerns.
When a doctor says something assinine like that to me, I will, if I'm really on my toes, ask them if they could point me to the literature on that topic. However I think I would have been momentarily speechless at the Montel comment. I love your husband's reponse! I actually told my husband he doesn't have to accompany me to appts anymore because he sounds a lot like your husband, lol. At my first appt with my neuro when he dx'ed me, he said something about not assuming now that everything that goes wrong is necessarily due to MS, I suppose they probably see that a lot, especially in the newly dx'ed when we're freaking out about every little strange sensation and ache, pain and twitch and we're not sure what to expect. The remark made sense to me and I didn't take offense. But my husband pipes up and says in the snottiest tone of voice "yeah, don't worry Buddy, she won't call to bother you if she has the sniffles" or something along those lines. I shot him the look of death though my eyes were uneven from diplopia so he didn't even notice. I think that's their protective instinct kicking in to support us when we're at our most vulnerable and they perceive someone as patronizining or making light of our serious concerns.
^^^ What she said. :)
The radiologist and neuro noted and counted the smaller lesion. I don't know if it was measured...it's there but small. The other is 7.7
He didn't listen either. I told him my back issues are new, and when he dictated, he said, "patient has a long history of back issues." He also said my spasms were stress related due to the uncertain diagnosis. I had to remind him my fascics started before all the m.s like symptoms began.
When I pressed him on the pain ms issue, and mind you, I never mentioned montell Williams nor do I know of his issues, he chirped, "if you believe montel, sure, pain happens." that's when I shut down. He thinks I have lesions in my cervical spine and ordered MRI but I said "no thanks.". My husband said, "yeah, what would montel know, he only has the disease. You read about it in a textbook so you know more.". My husband is kind of a badass. :)
When I pressed him on the pain ms issue, and mind you, I never mentioned montell Williams nor do I know of his issues, he chirped, "if you believe montel, sure, pain happens." that's when I shut down. He thinks I have lesions in my cervical spine and ordered MRI but I said "no thanks.". My husband said, "yeah, what would montel know, he only has the disease. You read about it in a textbook so you know more.". My husband is kind of a badass. :)
How is it possible that many of us seem to know more about MS than some neuros do? He is wrong on all three points you relayed.
1. MS DOES indeed cause pain. Why I have plenty of it right now, in my limbs, esp my left hand. Neuropathic pain, as in tight, burning, squeezing, electric, painful and abnormal sensations. Continuously for over 4 years.
2. 'Small' lesions (how does he define 'small'?) DO 'count.' I had one my neuro could just barely see, but it is there and he 'counts' it. Small lesions in the wrong sport can cause more trouble than larger lesions in the 'right' spot. Lesions of 3mm or more are considered significant and a sort of unofficial threshold but this does not exclude smaller lesions like mine from being one factor among many which may lead to a MS dx.
3. MS can cause symptoms all over the body, and can appear symmetrically. Often I hear it repeated here and elsewhere that in MS we don't or can't get symptoms at or around the same time on both sides of the body, but this is not true. When I was dx'ed, i had paresthesias in both of my hands and both feet. It started in my right pinky one morning, and by the end of that week it was not in all of four of my limbs. At the same time I had diplopia, nystagmus, MS Hug, plus a sensation of stiffness in my neck, and Lhermitte's, and vertigo, dizziness, numb right cheek, numb patches all over my back. My neuro calls these 'multifocal attacks.'
None of the above means that you have MS. It just doesn't mean that you don't. It is the entire picture that needs to be considered - clinical signs and symptoms, MRI of brain and usually spine, LP, evoked potentials, plus the differential diagnosis of ruling out of the vast number of conditions that mimic MS.
Yep, I'd say stick with neuro #1, for now at least. I'd dump the second guy just for his belief about MS and pain. The other misconceptions are just icing on the cake.
1. MS DOES indeed cause pain. Why I have plenty of it right now, in my limbs, esp my left hand. Neuropathic pain, as in tight, burning, squeezing, electric, painful and abnormal sensations. Continuously for over 4 years.
2. 'Small' lesions (how does he define 'small'?) DO 'count.' I had one my neuro could just barely see, but it is there and he 'counts' it. Small lesions in the wrong sport can cause more trouble than larger lesions in the 'right' spot. Lesions of 3mm or more are considered significant and a sort of unofficial threshold but this does not exclude smaller lesions like mine from being one factor among many which may lead to a MS dx.
3. MS can cause symptoms all over the body, and can appear symmetrically. Often I hear it repeated here and elsewhere that in MS we don't or can't get symptoms at or around the same time on both sides of the body, but this is not true. When I was dx'ed, i had paresthesias in both of my hands and both feet. It started in my right pinky one morning, and by the end of that week it was not in all of four of my limbs. At the same time I had diplopia, nystagmus, MS Hug, plus a sensation of stiffness in my neck, and Lhermitte's, and vertigo, dizziness, numb right cheek, numb patches all over my back. My neuro calls these 'multifocal attacks.'
None of the above means that you have MS. It just doesn't mean that you don't. It is the entire picture that needs to be considered - clinical signs and symptoms, MRI of brain and usually spine, LP, evoked potentials, plus the differential diagnosis of ruling out of the vast number of conditions that mimic MS.
Yep, I'd say stick with neuro #1, for now at least. I'd dump the second guy just for his belief about MS and pain. The other misconceptions are just icing on the cake.
I had a positive babinski too
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