Aa
A positive note...
You guys might not realize this, but I live in Fort Worth, Texas. Over in Dallas there's a top-notch MS facility at the UTSW campus. This is the center where Dr. Eliot Frohman does his research.
I've asked my neurology office to send over a physician-to-physician referral so that I can be seen by the center. So keep your fingers crossed, guys!
I'm slightly aggravated by the notes from my last visit from the current neuro. (They sent the stuff to me after they faxed it to the clinic.) Obviously this guy isn't listening to me. It says no sensory loss on the report - every time he runs the p rick test on me, he's in such a hurry he never stops to ask me if I can actually feel it. And if that's not the sensory loss they're talking about, I also have high-frequency hearing loss and optic nerve problems in my right eye. So it's definitely past time for me to see an actual MS specialist.
I've asked my neurology office to send over a physician-to-physician referral so that I can be seen by the center. So keep your fingers crossed, guys!
I'm slightly aggravated by the notes from my last visit from the current neuro. (They sent the stuff to me after they faxed it to the clinic.) Obviously this guy isn't listening to me. It says no sensory loss on the report - every time he runs the p rick test on me, he's in such a hurry he never stops to ask me if I can actually feel it. And if that's not the sensory loss they're talking about, I also have high-frequency hearing loss and optic nerve problems in my right eye. So it's definitely past time for me to see an actual MS specialist.
I agree. Some sort of a service agency/non-profit that could work on coordinating patient care. It wouldn't even have to be local to the patient as long as contact via phone or internet could be made. Could you imagine how nice it would be to call one person and say "I need an appointment made here, a copy of these MRIs, approval for this from my insurance company..."
Melissa
Melissa
I've noticed that there is a lot of work for me, the patient. If I was having the cognitive problems I had last year, or a couple of years ago, I would never have been able to manage it. Keeping track of records, medication, following up with the Betaseron people to get financial assistance, then calling the neuro's office to get a scrip for Betaseron to my Aetna pharmacy... all that takes some organization and phone skills and even language skills!
I wish that there was a resource for MS patients, so that those who weren't really able to handle it could hand off their paperwork to somebody who could.
I wish that there was a resource for MS patients, so that those who weren't really able to handle it could hand off their paperwork to somebody who could.
I'm so sorry about having to go through all of this. It's terrible that on top of being sick, you have to be on top of everything asking for certain meds and tastes. It's really sad.
I think by the time the doctor dictates his or her notes they have forgotten so much. They have an impression at the beginning and that's it. As far as the p___is test, I don't know why they do it like that. I have had dthe same thing. I had a doctor that tested maybe 5 or 6 areas in 3 seconds. Strange.
I hope you get in to the MS clinic soon!!!
Hugs, Red
I think by the time the doctor dictates his or her notes they have forgotten so much. They have an impression at the beginning and that's it. As far as the p___is test, I don't know why they do it like that. I have had dthe same thing. I had a doctor that tested maybe 5 or 6 areas in 3 seconds. Strange.
I hope you get in to the MS clinic soon!!!
Hugs, Red
That rocks! (that they received your records and are emailing the questionnaire to you) Sounds like things are moving quickly, and that this MS Clinic is really on top of things - at least paperwork-wise. I have my fingers crossed that you get an appointment soon!
I know what you mean about feeling like things must be about to go wrong since everything seems to be going right. Stay positive! You deserve to have an attentive dr who really listens to you, and it's great that you are doing what you need to to find one.
Melissa
I know what you mean about feeling like things must be about to go wrong since everything seems to be going right. Stay positive! You deserve to have an attentive dr who really listens to you, and it's great that you are doing what you need to to find one.
Melissa
Yeah, it's all looking good so far - which makes me worried! For things to be going so well, something must have gone wrong that I don't know about.
I don't think I could have handled this craziness a year ago. It's good to be in remission.
The very cursory sensory tests that my neuro has done on me - well, it just makes me mad. What's the point of doing them if you're not going to wait for my answer?
I know we always say this, but it's VERY IMPORTANT to keep all your records. Including a copy of the MRI disc. Without the copies that I've kept of my tests and MRIs, then the UTSW guys wouldn't have had anything useful. And for some reason the only MRI on my clinic records is the one done on a .7T open bore machine - which was negative for MS. I think I'm going to call and ask if they'd take that off!
I called the UTSW guys today, and confirmed that they had the records I faxed over, including the LP results. And yes, they did - yay! So now they're going to e-mail me a questionaire.
I don't think I could have handled this craziness a year ago. It's good to be in remission.
The very cursory sensory tests that my neuro has done on me - well, it just makes me mad. What's the point of doing them if you're not going to wait for my answer?
I know we always say this, but it's VERY IMPORTANT to keep all your records. Including a copy of the MRI disc. Without the copies that I've kept of my tests and MRIs, then the UTSW guys wouldn't have had anything useful. And for some reason the only MRI on my clinic records is the one done on a .7T open bore machine - which was negative for MS. I think I'm going to call and ask if they'd take that off!
I called the UTSW guys today, and confirmed that they had the records I faxed over, including the LP results. And yes, they did - yay! So now they're going to e-mail me a questionaire.
I'm slow this morning and initially had a hard time recognizing the positive post promised by the title. Guess it would have been easier if I'd realized you had been so unhappy with your present arrangements. I realize now it's the proactive move you made to improve your care and treatment.
I agree that it doesn't matter how good a particular doc is. MS is a disease that requires frequent long-term contact with a health care team that will direct your care and in large part be responsible for helping you maintain independence. You owe it to yourself to find someone you can look forward to seeing and working with. We should never have to dread office visits.
Hope this turns out to be a place you can be filled with confidence.
Mary
I agree that it doesn't matter how good a particular doc is. MS is a disease that requires frequent long-term contact with a health care team that will direct your care and in large part be responsible for helping you maintain independence. You owe it to yourself to find someone you can look forward to seeing and working with. We should never have to dread office visits.
Hope this turns out to be a place you can be filled with confidence.
Mary
big groan reading your post on how your neuro has not been listening.
totally relate to the ridiculous 5 second ***** test...i've had lots of numbness but most of it is to dull touch, not sharp---have the high frequency hearing loss too--why do neuro's ignore this!?
fingers crossed for the referral to pan out!
totally relate to the ridiculous 5 second ***** test...i've had lots of numbness but most of it is to dull touch, not sharp---have the high frequency hearing loss too--why do neuro's ignore this!?
fingers crossed for the referral to pan out!
COMMUNITY LEADER
I think it sounds like a pretty good option, hope you get an appointment and that it happens sooner rather than later. I'm glad you said "It says no sensory loss on the report - every time he runs the p rick test on me, he's in such a hurry he never stops to ask me if I can actually feel it." i didn't realise this was incorrect practice, only been tested once.
That is the test where they use a sharp or blunt object, right? I was asked if it was sharp or blunt when he did it on the underside of my feet, but not asked after that, at the time i was a little confused at how to describe it, not sharp not blunt, just felt a scrape under my foot, i couldn't say if i felt all the places he touched because he didn't ask.
Same thing with the tuning fork, asked if i could feel it when he put it on my left big toe and i thought it was the same test but a blunt object, so told him it was blunt. He moved to my right big toe, and i again said blunt but he said "no can you feel the vibration", i looked down and saw it was a tuning fork and said "oh yes".
I know i didn't feel a vibration when he put it places on my left leg but i could with the right but again he didn't ask me after he did it on the toes. I did wonder why he wasn't asking me what if anything i could feel so I asumed he was looking for a reaction he could see, is that not right too?
I have to admit to not feeling confident in the neuro after i stated telling him about my sight issues (now confirmed R- nastagmus, pale optic disk and double vision) and he said he only wanted to know if i was blind or not, that was an oh carp moment!
I do hope you get a neuro who listens and who takes over leading your treatment, i'll keep my fingers and toes crossed for you.
Cheers........JJ
That is the test where they use a sharp or blunt object, right? I was asked if it was sharp or blunt when he did it on the underside of my feet, but not asked after that, at the time i was a little confused at how to describe it, not sharp not blunt, just felt a scrape under my foot, i couldn't say if i felt all the places he touched because he didn't ask.
Same thing with the tuning fork, asked if i could feel it when he put it on my left big toe and i thought it was the same test but a blunt object, so told him it was blunt. He moved to my right big toe, and i again said blunt but he said "no can you feel the vibration", i looked down and saw it was a tuning fork and said "oh yes".
I know i didn't feel a vibration when he put it places on my left leg but i could with the right but again he didn't ask me after he did it on the toes. I did wonder why he wasn't asking me what if anything i could feel so I asumed he was looking for a reaction he could see, is that not right too?
I have to admit to not feeling confident in the neuro after i stated telling him about my sight issues (now confirmed R- nastagmus, pale optic disk and double vision) and he said he only wanted to know if i was blind or not, that was an oh carp moment!
I do hope you get a neuro who listens and who takes over leading your treatment, i'll keep my fingers and toes crossed for you.
Cheers........JJ
Well, the guy may actually know what he's doing, but if you have to drag it out of him and everything's a struggle, well, he's not the only act in town. Let's face it, we're in this for the long haul, so we need someone we can work with. That guy isn't it.
ess
ess
It's been really difficult, because the guy actually diagnosed me. Hearing all the horror stories from everybody here, I find it remarkable that I fit into his little pigeonhole. But I don't need the constant adversarial attitude from him. I have to ask for everything - the Baclofen, the Aricept, the neuro-psych exam, the 3T MRI - and honestly I'm just doing online research.
Who knows what my treatment would be like if it were actually led by somebody who knows what they're doing!
Who knows what my treatment would be like if it were actually led by somebody who knows what they're doing!
Yes, it's definitely time to move on. Not so easy to make ourselves do sometimes, but necessary nevertheless.
As to p rick, this is is one of the strange MedHelp no-no's. Although its use here is totally appropriate, they *** it out all the time. I have noticed that if I use sux, it gets by, and maybe the form without the final s does too, but the usual way of saying something is awful, su*ks, does not. I wonder how this is gotten around when breast-feeding is being discussed!
ess
As to p rick, this is is one of the strange MedHelp no-no's. Although its use here is totally appropriate, they *** it out all the time. I have noticed that if I use sux, it gets by, and maybe the form without the final s does too, but the usual way of saying something is awful, su*ks, does not. I wonder how this is gotten around when breast-feeding is being discussed!
ess
Good luck and hope that you get better treatment, both personally and medically.
Hard to fathom that the dx would be taken away with your hx and test results.
I'll be thinking of you,
Audrey
Hard to fathom that the dx would be taken away with your hx and test results.
I'll be thinking of you,
Audrey
Sure sounds to me like you should be seeing a neuro specializing in MS! Did the office say they definitely are sending over the referral?
My fingers are crossed for you. I hope they schedule you an appointment, and schedule it for sooner rather than later!
On a light note, I had to read your comment about the p rick test about 5 times before I understood what test you meant. I kept reading p-rick, as in 2 separate words and thinking "What on earth is that? I've never had a p-rick test... What does she mean?" Sheesh. Can you say brain fog? lol
Melissa
My fingers are crossed for you. I hope they schedule you an appointment, and schedule it for sooner rather than later!
On a light note, I had to read your comment about the p rick test about 5 times before I understood what test you meant. I kept reading p-rick, as in 2 separate words and thinking "What on earth is that? I've never had a p-rick test... What does she mean?" Sheesh. Can you say brain fog? lol
Melissa
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