Aa
What now? Call from new neuro's office, cried, then came here.
Dr. M, my new MS specialist, great at diagnosing atypical cases, has the great opportunity to head up a new MS Center in CA and will be leaving. My case has been transferred to a general neuro just getting started with MS. He's in a different clinic, but works closely with Dr. C., the head of the clinic that Dr. M. was a part of
His office is in the same building. I suppose Dr. C. couldn't accept me as a patient, what with transferring so many patients.
I was crying on the phone with the lady who called to let me know, and explained that I had such high hopes since I'd been to 3 previous neurologists and heard many good things about Dr. M. She sympathized; said that part of the time she's happy for him, and part of the time wants to strangle him, lol. BTW, laughing while crying can be messy. :o)
So, now what the heck do I do? My appt. with the new guy is Sept. 17, one day after I would have seen Dr. M. They will transfer the paperwork and MRIs that I already delivered, and I can call and see what else they would like to have prior to my appt.
Should I look for someone else, stick with this guy and see what happens, and if all else fails, attempt to get in the new clinic at UCLA when it's ready?
WAAAAAHHHHHHH!!!!!!!!!!!!!!
Deep breath. I'll take a shower, call the new neuro's office after I research his education and background, organize my paperwork, update my timeline, etc.
Then I'll go to the dentist and see why the two new crowns aren't working right; still a lot of pain; hot, cold, and pressure sensitivity. I'll remember to ask her about the letter she was going to write months ago about the likelihood of my upper left sided mouth pain attacks being trigeminal neuralgia, as there was no dental explanation for it.
Accepting suggestions and hugs....
Kathy
His office is in the same building. I suppose Dr. C. couldn't accept me as a patient, what with transferring so many patients.
I was crying on the phone with the lady who called to let me know, and explained that I had such high hopes since I'd been to 3 previous neurologists and heard many good things about Dr. M. She sympathized; said that part of the time she's happy for him, and part of the time wants to strangle him, lol. BTW, laughing while crying can be messy. :o)
So, now what the heck do I do? My appt. with the new guy is Sept. 17, one day after I would have seen Dr. M. They will transfer the paperwork and MRIs that I already delivered, and I can call and see what else they would like to have prior to my appt.
Should I look for someone else, stick with this guy and see what happens, and if all else fails, attempt to get in the new clinic at UCLA when it's ready?
WAAAAAHHHHHHH!!!!!!!!!!!!!!
Deep breath. I'll take a shower, call the new neuro's office after I research his education and background, organize my paperwork, update my timeline, etc.
Then I'll go to the dentist and see why the two new crowns aren't working right; still a lot of pain; hot, cold, and pressure sensitivity. I'll remember to ask her about the letter she was going to write months ago about the likelihood of my upper left sided mouth pain attacks being trigeminal neuralgia, as there was no dental explanation for it.
Accepting suggestions and hugs....
Kathy
Kathy,
So glad you're getting in to see Dr. C. I have friends who see him who say he's great. I've had thoughts of trying to get in to see him myself. So sorry that Dr. M is leaving and you might have to wait longer to get in to see Dr. C because of that. But glad you don't have to see a doc in the other practice. (FWIW, my neuro just "released" me because my LP was normal. No interest in pursuing a cause for any of my neurological symptoms that, while I agree probably aren't MS, are still neurological. Sigh.)
Anyway, I hope Dr. C is able to diagnose you! And soon!!
So glad you're getting in to see Dr. C. I have friends who see him who say he's great. I've had thoughts of trying to get in to see him myself. So sorry that Dr. M is leaving and you might have to wait longer to get in to see Dr. C because of that. But glad you don't have to see a doc in the other practice. (FWIW, my neuro just "released" me because my LP was normal. No interest in pursuing a cause for any of my neurological symptoms that, while I agree probably aren't MS, are still neurological. Sigh.)
Anyway, I hope Dr. C is able to diagnose you! And soon!!
Today is better. Things will work out; they always do, even if it's not exactly how you might expect.
I am pretty tired today, after running some errands this morning; I think that stress yesterday took a lot out of me.
huff, I had to chuckle about your description of my yesterday being like a movie; i was thinking like it was a nightmare and I was having a hard time waking up, but I like the movie better. The ending was fine; after all that stress, my roommate bought me a nice dinner out and Fluffy even behaved himself and let me get a fair night's sleep. :o)
Heather, this post has gotten so long, I think that some of the information is getting mixed up. The guy with 5 years experience is the one in a clinic with a my second neuro, who was dismissive, ignored my symptoms, and dismissed me when my LP was negative. I won't be seeing him.
I was going to see Dr. M., the MS specialist at the MS Center at St. V.'s hospital after he reviewed my MRIs and some records and accepted me as a patient, but he's the one who's moving to head up a new MS Clinic at UCLA.
I hadn't seen him yet; I have been waiting months to get in to see him after my last MS specialist dismissed me because I "didn't trust her opinion" because I questioned her for not responding to some questions I asked in writing 5 months before. She was also stuck on a diagnosis that didn't fit my history or symptoms.
I called the MS Center at St. V.'s, and after explaining my situation, they reviewed my chart, and called back and agreed to schedule me in with the head of the MS Clinic. He is supposedly really excellent, many years of experience and a great educational and research background.
I'm looking forward to a fresh opinion.
Alex, I wish you had a better situation, too. Any chance you could travel to a state that has more options? I was just talking to my dentist yesterday about how some areas have so many MS patients, but so few true specialists.
She told me she saw a huge billboard up in Seattle that asked "Why do we have so much more MS here?" or something like that, and gave a number to call for asking questions and accessing information and help. She also says that more and more of her patients are showing up with odd neurological conditions, and she had WAY too much to tell me about trigeminal neuralgia, though it was good to talk to a medical professional that understood it so well.
She said that doctor's rarely take a dentist's word about a patient having trigeminal neuralgia. She also hopes I find a really good neurologist. My last one didn't care if I had trigeminal neuralgia or some other kind of nerve pain, said it was all treated the same. She ignored the fact that it could be related to a lesion in an area of my brainstem, and therefore might possibly point towards MS.
Anyway, I'm trying to perk up enough to make a pasta dish for dinner, though I feel like taking a nap. I guess around 5 pm is too late to nap...
Thanks for all your comments and support.
Kathy
I am pretty tired today, after running some errands this morning; I think that stress yesterday took a lot out of me.
huff, I had to chuckle about your description of my yesterday being like a movie; i was thinking like it was a nightmare and I was having a hard time waking up, but I like the movie better. The ending was fine; after all that stress, my roommate bought me a nice dinner out and Fluffy even behaved himself and let me get a fair night's sleep. :o)
Heather, this post has gotten so long, I think that some of the information is getting mixed up. The guy with 5 years experience is the one in a clinic with a my second neuro, who was dismissive, ignored my symptoms, and dismissed me when my LP was negative. I won't be seeing him.
I was going to see Dr. M., the MS specialist at the MS Center at St. V.'s hospital after he reviewed my MRIs and some records and accepted me as a patient, but he's the one who's moving to head up a new MS Clinic at UCLA.
I hadn't seen him yet; I have been waiting months to get in to see him after my last MS specialist dismissed me because I "didn't trust her opinion" because I questioned her for not responding to some questions I asked in writing 5 months before. She was also stuck on a diagnosis that didn't fit my history or symptoms.
I called the MS Center at St. V.'s, and after explaining my situation, they reviewed my chart, and called back and agreed to schedule me in with the head of the MS Clinic. He is supposedly really excellent, many years of experience and a great educational and research background.
I'm looking forward to a fresh opinion.
Alex, I wish you had a better situation, too. Any chance you could travel to a state that has more options? I was just talking to my dentist yesterday about how some areas have so many MS patients, but so few true specialists.
She told me she saw a huge billboard up in Seattle that asked "Why do we have so much more MS here?" or something like that, and gave a number to call for asking questions and accessing information and help. She also says that more and more of her patients are showing up with odd neurological conditions, and she had WAY too much to tell me about trigeminal neuralgia, though it was good to talk to a medical professional that understood it so well.
She said that doctor's rarely take a dentist's word about a patient having trigeminal neuralgia. She also hopes I find a really good neurologist. My last one didn't care if I had trigeminal neuralgia or some other kind of nerve pain, said it was all treated the same. She ignored the fact that it could be related to a lesion in an area of my brainstem, and therefore might possibly point towards MS.
Anyway, I'm trying to perk up enough to make a pasta dish for dinner, though I feel like taking a nap. I guess around 5 pm is too late to nap...
Thanks for all your comments and support.
Kathy
My first neurologist left after my first appointment. Telling me he thought I had MS and needed an LP, but gave me only a business card of another neurologist. She was only into headaches and never did an LP. Then I got in with the MS Specialist I have now. Word is he is leaving, but he will say nothing. He told me to make a six month follow up, but they told me he does not have any six month follow ups.
I am not sure what to do. Even though we have Duke and UNC. There are only three MS Specialists. My doctor, a doctor at Duke who is not taking anymore patients, and a researcher at UNC who does not see her patients at all ( you see a PA). There are 5,000 MS patients in the area.
I am sorry for your situation. It would be nice if we had more choices. It is hard to change especially if you are not diagnosed.
Of course it took me over fifty psychiatrists over thirty years before I found the great one I have now.
I have only had three neurologists. I only get to see a neurologist for 15 minutes twice a year so it really does not matter. He just is interested in the neurological exam not symptoms.
Take care,
Alex
I am not sure what to do. Even though we have Duke and UNC. There are only three MS Specialists. My doctor, a doctor at Duke who is not taking anymore patients, and a researcher at UNC who does not see her patients at all ( you see a PA). There are 5,000 MS patients in the area.
I am sorry for your situation. It would be nice if we had more choices. It is hard to change especially if you are not diagnosed.
Of course it took me over fifty psychiatrists over thirty years before I found the great one I have now.
I have only had three neurologists. I only get to see a neurologist for 15 minutes twice a year so it really does not matter. He just is interested in the neurological exam not symptoms.
Take care,
Alex
Did you ask your dr that's moving to pretty please explain what he thinks is going on in a written letter to the new doc? Maybe write him a cover letter to explain?
I guess I don't have any great ideas, but I really feel for you!
It could be a good thing that the newbie isn't so burnt out on patients after only 5 years.
You never know unless you try!
Be well,
Heather
I guess I don't have any great ideas, but I really feel for you!
It could be a good thing that the newbie isn't so burnt out on patients after only 5 years.
You never know unless you try!
Be well,
Heather
I've been reading this post on the edge of my seat, like watching a movie when the important part comes on when you try to get everyone to be quiet so you don't miss it. I feel bad for your day, I would of been pacing back and forth, never sitting down. Atleast the days almost over and tomorrow hopefully will be better for you.
Well, I was told that Dr. C. at this MS Center, the director or whatever his titile is, is thought of by many to be a saint, or words to that effect.
Once I found out that I could see him, even if I had to wait, I settled down. My roommate got home from work, and told me that there must be some reason why I'm seeing him instead of Dr. M., and then Shell and Lulu tell me basically the same thing.
When I didn't get the neuro I requested at OHSU, it was a disaster. Maybe my neuro disasters are used up for a while, and I'm on the right path.
Thanks to all of you who've helped me weather the storms.
Love and hugs,
Kathy
Once I found out that I could see him, even if I had to wait, I settled down. My roommate got home from work, and told me that there must be some reason why I'm seeing him instead of Dr. M., and then Shell and Lulu tell me basically the same thing.
When I didn't get the neuro I requested at OHSU, it was a disaster. Maybe my neuro disasters are used up for a while, and I'm on the right path.
Thanks to all of you who've helped me weather the storms.
Love and hugs,
Kathy
Kathy,
My neuro was not who I was referred to either - he was the new guy and I took the appt with him rather than wait 2-3 months for the other doctor. I am so thankful I said yes - I would not trade my neuro for anything and I hope he never, ever leaves the area.
The odds are good because he and his wife and toddler was from the area originally and he took this job to be close to their families. I'm just hoping their child never grows up! :-)
E verything happens for a reason - we'll just have to wait and see what good comes out of this for you.
my best,
L
PS - sorry about the continuing problem with the dental work - I feel your pain.
My neuro was not who I was referred to either - he was the new guy and I took the appt with him rather than wait 2-3 months for the other doctor. I am so thankful I said yes - I would not trade my neuro for anything and I hope he never, ever leaves the area.
The odds are good because he and his wife and toddler was from the area originally and he took this job to be close to their families. I'm just hoping their child never grows up! :-)
E verything happens for a reason - we'll just have to wait and see what good comes out of this for you.
my best,
L
PS - sorry about the continuing problem with the dental work - I feel your pain.
That is great news about the neuro! So sorry to hear your news about the root canal & crowns...I haven't ever had a root canal, but I do have 4 crowns - so I know how you feel about them not feeling right. I think it took about 6 months for my teeth to feel "right" after they were crowned.
Hope you can get that all sorted out.
Chrisy
P.S. My offer still stands if you need or decide to check out a neuro in Seattle!
Hope you can get that all sorted out.
Chrisy
P.S. My offer still stands if you need or decide to check out a neuro in Seattle!
Aw, dag nappit!!!!!!! This stinks!
You do like trips, Ms. Kath. CA?? You and the fluffster?
Seriously though, ou never know - maybe it's your fate to have this new guy. Stranger things have happened. It happened with me and my great urologist. I booked the head well known guy originally, only to finally get to appt. day and get the Jr. guy in the practice. He was no rookie though and was fab! Thank God!
-shell
You do like trips, Ms. Kath. CA?? You and the fluffster?
Seriously though, ou never know - maybe it's your fate to have this new guy. Stranger things have happened. It happened with me and my great urologist. I booked the head well known guy originally, only to finally get to appt. day and get the Jr. guy in the practice. He was no rookie though and was fab! Thank God!
-shell
Well, it's definitely a bad news/good news/bad news/kinda good news kind of day!
I called back to the MS Center that Dr. M. is leaving, and explained my situation to a very nice lady there. She wanted to know who had called me, why they wouldn't arrange an appt. with me for their clinic, etc. I told her I didn't write down the person's name.
She said that she needed to speak to her manager, and would call me back; if not shortly, then tomorrow, since she had a late afternoon appt. with her manager and could discuss my situation in depth.
She called back in less than 10 minutes, said that Dr. C. agreed that I shouldn't be sent to the other clinic, and that I would be worked into HIS schedule. It may take a while, since they are having to juggle a lot of patients, but I'm fine with that. She said that the manager was going over my file as we spoke, and they would let me know if they wanted more info. before my appointment, whenever that will be. :o)
I'll just get on with updating my timeline, reporting stuff to my PCP, and waiting.
As for bad news; the tooth that I just had a crown put on needs a root canal, another $1082. I can wait and see if it will calm down, but my dentist is pretty sure that it will need a root canal. There is a possibility that the root will die, and not need the root canal for 4 or 5 years, so I'm thinking "die, die!", lol!
Good news, sort of, is the tooth on the other side, where I had a root canal and crown, is most likely still painful because that is the side that I have trigeminal neuralgia on. She took a long time, telling me about her other patients with TN, and how they tend to have pain longer after a root canal, even if the TN doesn't flare up.
Bad news, there could still be some infection in the bone that could cause things to flare up again, that won't show up on X-ray until it's bad.
Other bad news; the tooth on the lower left side in the back that's cracked and will need a crown in the future hasn't had a root canal done, therefore may end up costing another $2000+. I'm seriously considering just having it pulled, though I'm already missing the tooth in front of it, and having two missing teeth might cause other issues.
I'm trying to figure out the financing for the upper right side root canal, hoping the darn tooth will just calm down. It hurts to eat salads, cold watermelon, hot food, hard food, sigh. I just take small bites and chew in a limited part of my mouth.
I think the good news outweighs the bad; I will be seeing a good MS specialist here locally, even if it takes a while. Woo hoo!
Hugs,
Kathy
I called back to the MS Center that Dr. M. is leaving, and explained my situation to a very nice lady there. She wanted to know who had called me, why they wouldn't arrange an appt. with me for their clinic, etc. I told her I didn't write down the person's name.
She said that she needed to speak to her manager, and would call me back; if not shortly, then tomorrow, since she had a late afternoon appt. with her manager and could discuss my situation in depth.
She called back in less than 10 minutes, said that Dr. C. agreed that I shouldn't be sent to the other clinic, and that I would be worked into HIS schedule. It may take a while, since they are having to juggle a lot of patients, but I'm fine with that. She said that the manager was going over my file as we spoke, and they would let me know if they wanted more info. before my appointment, whenever that will be. :o)
I'll just get on with updating my timeline, reporting stuff to my PCP, and waiting.
As for bad news; the tooth that I just had a crown put on needs a root canal, another $1082. I can wait and see if it will calm down, but my dentist is pretty sure that it will need a root canal. There is a possibility that the root will die, and not need the root canal for 4 or 5 years, so I'm thinking "die, die!", lol!
Good news, sort of, is the tooth on the other side, where I had a root canal and crown, is most likely still painful because that is the side that I have trigeminal neuralgia on. She took a long time, telling me about her other patients with TN, and how they tend to have pain longer after a root canal, even if the TN doesn't flare up.
Bad news, there could still be some infection in the bone that could cause things to flare up again, that won't show up on X-ray until it's bad.
Other bad news; the tooth on the lower left side in the back that's cracked and will need a crown in the future hasn't had a root canal done, therefore may end up costing another $2000+. I'm seriously considering just having it pulled, though I'm already missing the tooth in front of it, and having two missing teeth might cause other issues.
I'm trying to figure out the financing for the upper right side root canal, hoping the darn tooth will just calm down. It hurts to eat salads, cold watermelon, hot food, hard food, sigh. I just take small bites and chew in a limited part of my mouth.
I think the good news outweighs the bad; I will be seeing a good MS specialist here locally, even if it takes a while. Woo hoo!
Hugs,
Kathy
I think i just left a post on the other one....UCSF MS Specialists are the best. and they are # 3 for neurology in the country.....It was my first MS specialist and i couldn't be happier with them.
hugs, meg
hugs, meg
I am so sorry you are continuing on the frustration path. I am offering you a hug and some more kleenex. Seems, sometimes we just go round and round in circles with all the medical stuff. So much insanity..
As for your teeth, wow, again I am sorry. I know it was so much for you to go through and then to have to go back?! More frustration for you...
I do hope things will start to go the right direction for you and soon. You have been through enough...
Hugs,
Michelle
As for your teeth, wow, again I am sorry. I know it was so much for you to go through and then to have to go back?! More frustration for you...
I do hope things will start to go the right direction for you and soon. You have been through enough...
Hugs,
Michelle
Sorry Kathy I have no brain today. It just isn't working at all. I know you do not have a dx. I don't know what I thought I read. I just wanted to let you know I am with you. terry
I researched the new neuro; he's really new, 5 years experience. Unfortunately, he works in the same office as neuro #2, who was dismissive and suggested somatization.
He's not in a new practice, really; it's an expansion office for the one I went to in NW Portland. Dr. McM. (#2) is listed as a neuro at both facilities, too.
I'm afraid that would give me a bad start, as he would naturally want to discuss my case with someone who had seen me. Dr. M. didn't have my records from that neuro, so he wouldn't have known that the deck could be stacked against me.
Terry, I have a PCP and neuro-radiologist that believe I have an atypical presentation of MS, but they can't diagnose me.
Can I trust a new guy to ignore the history provided by his burnt-out (my PCP's words) co-worker?
I looked him up on the Vitals website, only one person had rated him; good rating, but he hadn't previously been seen by Dr. you-have-a-negative-LP-no-further-neurological-follow-up-neccessary.
Sigh!
I'll hang in there, do some brainstorming in between meditation time.
Kathy
He's not in a new practice, really; it's an expansion office for the one I went to in NW Portland. Dr. McM. (#2) is listed as a neuro at both facilities, too.
I'm afraid that would give me a bad start, as he would naturally want to discuss my case with someone who had seen me. Dr. M. didn't have my records from that neuro, so he wouldn't have known that the deck could be stacked against me.
Terry, I have a PCP and neuro-radiologist that believe I have an atypical presentation of MS, but they can't diagnose me.
Can I trust a new guy to ignore the history provided by his burnt-out (my PCP's words) co-worker?
I looked him up on the Vitals website, only one person had rated him; good rating, but he hadn't previously been seen by Dr. you-have-a-negative-LP-no-further-neurological-follow-up-neccessary.
Sigh!
I'll hang in there, do some brainstorming in between meditation time.
Kathy
This is so frustrating! I got frustrated for you - just reading how close you were to seeing this new neuro, only to have him move elsewhere...I agree with the others - I think you should see this new neuro too.
So sorry to hear that your teeth are still bothering you - hope you can get that sorted out quickly.
Sending you sympathetic hugs,
Chrisy
So sorry to hear that your teeth are still bothering you - hope you can get that sorted out quickly.
Sending you sympathetic hugs,
Chrisy
Well shoot, Kathy, I know how important this appt was to you and the hope that it would provide answers.
I'm with Terry to try the new neuro - perhaps this doctor will take a special interst in you as one of the first patients in the new practice?
I know Terry slipped when she said you have a dx - keep on pushing to get those answers.
hang in there and do some extra meditation time to get over this one,
Lulu
I'm with Terry to try the new neuro - perhaps this doctor will take a special interst in you as one of the first patients in the new practice?
I know Terry slipped when she said you have a dx - keep on pushing to get those answers.
hang in there and do some extra meditation time to get over this one,
Lulu
Sometimes Kathy, a neuro who is just getting his pratice started will listen to you more than someone who already has one and you did say he had worked closely with the other doctor. Also your dr. recommended him. That must mean he trusts this guy to look after his patients. I vote to give him a try. You can always change later.
Hang in there, I am sorry your teeth are still hurting. As you know I hate going to the dentist.
Take a deep breath. Count your blessing (you now have a dx) and go forward. You can do. You are one of the toughest ppl I know. You will get past this and land on the right side of the fence.
Hugs, terry
Hang in there, I am sorry your teeth are still hurting. As you know I hate going to the dentist.
Take a deep breath. Count your blessing (you now have a dx) and go forward. You can do. You are one of the toughest ppl I know. You will get past this and land on the right side of the fence.
Hugs, terry
Thanks for the sympathy; it's very frustrating indeed.
I live in Portland OR, so it would be difficult for me to go to UCLA. My roommate is willing to help with a flight and possibly a timeshare nearby, but it might be difficult and expensive to go to follow-up appointments there.
My PCP is willing to help with any referrals since she's watched what I've been going through and after reviewing my 3T MRIs with a neuro-radiologist, believes that what I have is an atypical presentation of MS. She was ready to send me to the Mayo Clinic in Rochester, though I've heard that they're not so good at atypical cases.
I'll do some research, call UCLA if neccessary, talk to others that are already seeing the neuro that's leaving and see what they are doing, see if they have any ideas.
I think I'll do some meditation, too, so I don't get my stress level to high about this.
I live in Portland OR, so it would be difficult for me to go to UCLA. My roommate is willing to help with a flight and possibly a timeshare nearby, but it might be difficult and expensive to go to follow-up appointments there.
My PCP is willing to help with any referrals since she's watched what I've been going through and after reviewing my 3T MRIs with a neuro-radiologist, believes that what I have is an atypical presentation of MS. She was ready to send me to the Mayo Clinic in Rochester, though I've heard that they're not so good at atypical cases.
I'll do some research, call UCLA if neccessary, talk to others that are already seeing the neuro that's leaving and see what they are doing, see if they have any ideas.
I think I'll do some meditation, too, so I don't get my stress level to high about this.
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