Aa
So I Went To The Neuro...
...and I liked him. He's not an MS specialist, per se (I'm seeing one at the MS clinic in April), but he has lots of patients with MS and actually seemed to have a clue. Which was nice since I, frankly, wasn't optimistic. This is what happened.
I gave him my history and whatnot and he tested all my reflexes which seemed ok. He looked at the MRI's from 2003 and from this year and said that he cannot see any lesions on either. However, he said the quality of the recent one was poor in his opinion and he wants to do a better MRI - one with a double amount of contrast. He also wants a 15 minute delay between the no contrast MRI and the with contrast MRI because he feels that's better for it to be absorbed in your system and gives a better reading.
He said that lots of MRI places don't want to do that because it essentially takes up 2 timeslots, but that he'll talk to people he knows to schedule something for me at a place where he knows the quality is very high. He said it's really hard to tell for sure with the other MRI at this point and he wants more info. He also wants to wait until next month so there will be a full 3 months between MRI's which he believes will give more of a chance for any new lesions to show up if they're there. I like that he wants a better reading and isn't just assuming no lesions so that made me instantly like him even better.
He said he cannot officially diagnose me based on the McDonald criteria without any lesions on my MRI, at least not yet. He did say that some people have MS and have clean MRI's (which I know, but I also know many docs won't even consider it), but he said it's rare so he wants to do more testing before he considers meds. He did say, however, that if he could diagnose based purely on symptoms, he would diagnose me with MS and offered no other possible diagnoses at this point for what's happening.
I'm viewing the lack of lesions as a very good sign, which he told us it was, but he seemed to give the impression that it was basically a matter of time before we can see them. I already had bloodwork done and he really didn't seem to think it could be anything else causing this. I think the ON (which, I realized just yesterday is in a different eye this time than it was the first time - I had just assumed it was the same eye because I didn't actually remember) is the clincher for him. But he needs more scientific evidence before making it official. I figure, I'll give him the benefit of the doubt for now since he is willing to do more tests.
Next Thursday I have to have a spinal tap too which I'm sooooooo not happy about I just can't begin to tell you. But, if it will give them more info then I guess I need to suck it up.
All in all, he was a cool doc and had a good bedside manner who also seemed to know what he was talking about. I think it's a rare combo. He was clearly very smart, but talked to us like people and spent alot of time with us. All in all, I definitely left feeling better than when I went in, even though I didn't get the official diag.
Any tips on the LP next week? How bad is it?
So that's about it for now. Thanks to everyone for your support and input. It's greatly appreciated!
I gave him my history and whatnot and he tested all my reflexes which seemed ok. He looked at the MRI's from 2003 and from this year and said that he cannot see any lesions on either. However, he said the quality of the recent one was poor in his opinion and he wants to do a better MRI - one with a double amount of contrast. He also wants a 15 minute delay between the no contrast MRI and the with contrast MRI because he feels that's better for it to be absorbed in your system and gives a better reading.
He said that lots of MRI places don't want to do that because it essentially takes up 2 timeslots, but that he'll talk to people he knows to schedule something for me at a place where he knows the quality is very high. He said it's really hard to tell for sure with the other MRI at this point and he wants more info. He also wants to wait until next month so there will be a full 3 months between MRI's which he believes will give more of a chance for any new lesions to show up if they're there. I like that he wants a better reading and isn't just assuming no lesions so that made me instantly like him even better.
He said he cannot officially diagnose me based on the McDonald criteria without any lesions on my MRI, at least not yet. He did say that some people have MS and have clean MRI's (which I know, but I also know many docs won't even consider it), but he said it's rare so he wants to do more testing before he considers meds. He did say, however, that if he could diagnose based purely on symptoms, he would diagnose me with MS and offered no other possible diagnoses at this point for what's happening.
I'm viewing the lack of lesions as a very good sign, which he told us it was, but he seemed to give the impression that it was basically a matter of time before we can see them. I already had bloodwork done and he really didn't seem to think it could be anything else causing this. I think the ON (which, I realized just yesterday is in a different eye this time than it was the first time - I had just assumed it was the same eye because I didn't actually remember) is the clincher for him. But he needs more scientific evidence before making it official. I figure, I'll give him the benefit of the doubt for now since he is willing to do more tests.
Next Thursday I have to have a spinal tap too which I'm sooooooo not happy about I just can't begin to tell you. But, if it will give them more info then I guess I need to suck it up.
All in all, he was a cool doc and had a good bedside manner who also seemed to know what he was talking about. I think it's a rare combo. He was clearly very smart, but talked to us like people and spent alot of time with us. All in all, I definitely left feeling better than when I went in, even though I didn't get the official diag.
Any tips on the LP next week? How bad is it?
So that's about it for now. Thanks to everyone for your support and input. It's greatly appreciated!
Craig laid down in the back seat of the car on the way home. Be sure to drink some caffeinated beverages along with water.
Elaine
Elaine
WELCOME,
YOUR NEURO SOUNDS GREAT, A LOT LIKE MINE.I WAS ORIGINALLY DIAGNOSED WITHOUT LESIONS AND BY SYMPTOMS,THE LP AND THE BRAIN ATROPHY.
TEST HAVE SINCE THAT ORIGINAL DIAGNOSIS HAVE BEEN CONCLUSIVE FOR MS.
I AM HAPPY YOU HAVE AN AGGRESIVE NEURO AND HAS RECONIZED YOUR SYMPTOMS AND TREATING YOU.
T-LYNN
YOUR NEURO SOUNDS GREAT, A LOT LIKE MINE.I WAS ORIGINALLY DIAGNOSED WITHOUT LESIONS AND BY SYMPTOMS,THE LP AND THE BRAIN ATROPHY.
TEST HAVE SINCE THAT ORIGINAL DIAGNOSIS HAVE BEEN CONCLUSIVE FOR MS.
I AM HAPPY YOU HAVE AN AGGRESIVE NEURO AND HAS RECONIZED YOUR SYMPTOMS AND TREATING YOU.
T-LYNN
Thanks for the comforting words. I've already told my husband he'll probably need to cater to me for a little while and he said he's got no problem with that. Thank God I married a good one!
I'll let you all know how I make out next week. Think good thoughts for me, the big chicken that I am!
Hugs back,
Birdie
I'll let you all know how I make out next week. Think good thoughts for me, the big chicken that I am!
Hugs back,
Birdie
When I had mine we had to come home in our old bumpy truck and yes I did half lie down in the front seat of the truck! Your head basically has to be lower than your shoulders to alleviate the pain and my pain started while leaving the hospital! I was fine once I got into the truck and got my head down and then it was just the time to get from the truck to my bed.
Once in the bed....no problem! Like my hubby said...when I lifted my head 2" off of the pillow instant headache BUT put the head back down...headache gone!
You will be fine honey so don't go getting yourself all worked up ok? You have the pill to take beforehand so you won't even know what hit you and you will have a smile on your face to boot!
Lots of hugs,
Rena
Once in the bed....no problem! Like my hubby said...when I lifted my head 2" off of the pillow instant headache BUT put the head back down...headache gone!
You will be fine honey so don't go getting yourself all worked up ok? You have the pill to take beforehand so you won't even know what hit you and you will have a smile on your face to boot!
Lots of hugs,
Rena
Thanks everyone. I'm really happy with the neuro so far.
My husband has been doing a TON of research on treatment since he's a pharmacist. He really thinks LDN might be for real and he's not a big believer in snake oil. He essentially has a binder of information he's printed on LDN being used for other autoimmune diseases, etc. and brought it with him. He got into a good little debate with the neuro about it and I was impressed with the neuro. He didn't just shrug him off like most arrogant docs, but listened to what my husband was saying and took the copies of some research my husband had printed for him. We'll see if he actually reads it, but he didn't just roll his eyes and ignore him so that really sealed the deal for us as to whether or not we liked him as a doctor.
He said he couldn't prescribe something that didn't have a double blind placebo study behind it because there have been many crackpot so-called treatments over the years, but that he would look at the info and wouldn't rule anything out. He said he'd even consider prescribing it, but ONLY if my next MRI showed no lesions because as a physician he didn't feel comfortable gambling with my health on something that only had anecdotal evidence. I was impressed because he stuck to his guns, but actually listened to my husband and admitted that there could be things out there that he doesn't know. That's pretty rare in a doc, in my opinion.
Cosmo, the LP is being done in the neuro's office. Honestly, I don't want to know what guage needle would be used! LOL. I'm very needle phobic so this is a rough one for me. The doc actually asked if I wanted him to prescribe something to take beforehand to relax me and I wasn't sure, but my husband said YES so he did. The doc was entertaining and said "Bring 2. You take one and I'll take one. I'm sure it will go better that way!" LOL.
Rena, I will take your advice VERY seriously. Do you think the ride home will be problematic? I'm afraid it will be during rush hour and I'll be stuck in the car for a while. Do I need to lay down in the car on the way home? I'll do whatever I need to try to avoid that headache. Yikes!
My husband has been doing a TON of research on treatment since he's a pharmacist. He really thinks LDN might be for real and he's not a big believer in snake oil. He essentially has a binder of information he's printed on LDN being used for other autoimmune diseases, etc. and brought it with him. He got into a good little debate with the neuro about it and I was impressed with the neuro. He didn't just shrug him off like most arrogant docs, but listened to what my husband was saying and took the copies of some research my husband had printed for him. We'll see if he actually reads it, but he didn't just roll his eyes and ignore him so that really sealed the deal for us as to whether or not we liked him as a doctor.
He said he couldn't prescribe something that didn't have a double blind placebo study behind it because there have been many crackpot so-called treatments over the years, but that he would look at the info and wouldn't rule anything out. He said he'd even consider prescribing it, but ONLY if my next MRI showed no lesions because as a physician he didn't feel comfortable gambling with my health on something that only had anecdotal evidence. I was impressed because he stuck to his guns, but actually listened to my husband and admitted that there could be things out there that he doesn't know. That's pretty rare in a doc, in my opinion.
Cosmo, the LP is being done in the neuro's office. Honestly, I don't want to know what guage needle would be used! LOL. I'm very needle phobic so this is a rough one for me. The doc actually asked if I wanted him to prescribe something to take beforehand to relax me and I wasn't sure, but my husband said YES so he did. The doc was entertaining and said "Bring 2. You take one and I'll take one. I'm sure it will go better that way!" LOL.
Rena, I will take your advice VERY seriously. Do you think the ride home will be problematic? I'm afraid it will be during rush hour and I'll be stuck in the car for a while. Do I need to lay down in the car on the way home? I'll do whatever I need to try to avoid that headache. Yikes!
Hi,
I just got diagnosed last week. Your neuro sounds alot like mine - I really like him. I have to get an LP next Tuesday, and I'm not thrilled either! He is treating regardless of the results because he is very confident I have MS based on everything else. He said he wouldn't MAKE me get the LP, but he'd really like to know what it does or doesn't show for completeness sake - and I think maybe to have a comparison if I need another one for some reason later on down the pike. I will be starting the shots very soon....
Is yours being done in the office by the neuro or under flouro by a radiologist? Mine's going to be at the hospital, and I got to work with the radiologist who is going to do it yesterday, so I was able to ask her all about it. She was good and gave me all the details, down to what gauge needle she would use and why.
I'll let you know how it goes after mine....she said if I'm doing fine, I only have to hang around at the hospital for an hour or so, and then go home and take it easy and have somone wait on me, lol.
Rita
I just got diagnosed last week. Your neuro sounds alot like mine - I really like him. I have to get an LP next Tuesday, and I'm not thrilled either! He is treating regardless of the results because he is very confident I have MS based on everything else. He said he wouldn't MAKE me get the LP, but he'd really like to know what it does or doesn't show for completeness sake - and I think maybe to have a comparison if I need another one for some reason later on down the pike. I will be starting the shots very soon....
Is yours being done in the office by the neuro or under flouro by a radiologist? Mine's going to be at the hospital, and I got to work with the radiologist who is going to do it yesterday, so I was able to ask her all about it. She was good and gave me all the details, down to what gauge needle she would use and why.
I'll let you know how it goes after mine....she said if I'm doing fine, I only have to hang around at the hospital for an hour or so, and then go home and take it easy and have somone wait on me, lol.
Rita
Hi Birdie...sounds like you have a neuro with a conscience! That is rather rare around here and I congratulate you! He seems to have all his ducks in a row and an LP would be the next normal step when searching for an MS diagnosis.
The Lumbar Puncture for the most part is not so bad. You will feel pressure as they extract the spinal fluid but other than that it is pretty much painless.
The thing you have to worry about is the after effects. You really have to listen to all of us when we tell you that you have to take it really easy afterwards. The loss of the spinal fluid can give you the WORST headache that you can ever imagine! What you have to do is ensure that you drink lot's and lots' of fluids afterwards and lot's and lot's of caffeine! We are not sure why the caffeine makes a difference but it does and it can be in coffee, pop, whatever. Also VERY IMPORTANT is that you stay in a prone position with your head down! Once the procedure is done, you will be told to stay lying down for a while and do yourself a favor and stay there as long as you can! When you go home, don't plan on getting up for anything other than to relieve yourself! You should have someone there to tend to your other needs because you will find out very quickly that if you raise your head...you will get the worst pain you have ever felt! Just keep your head down and you will be fine!
This varies from person to person but on average you should plan on laying low (excuse the pun) for at least 2-3 days and then you are covered but it could extend to 4-5 days depending on how long it take to replenish the fluid in your spine, hence the need to drink all the fluids you can.
Well that's about it in a nutshell! If you have any other questions...just ask ok and I wish you lot's of luck with your LP! Let us know how you make out afterwards ok?
Lots of Hugs,
Rena
The Lumbar Puncture for the most part is not so bad. You will feel pressure as they extract the spinal fluid but other than that it is pretty much painless.
The thing you have to worry about is the after effects. You really have to listen to all of us when we tell you that you have to take it really easy afterwards. The loss of the spinal fluid can give you the WORST headache that you can ever imagine! What you have to do is ensure that you drink lot's and lots' of fluids afterwards and lot's and lot's of caffeine! We are not sure why the caffeine makes a difference but it does and it can be in coffee, pop, whatever. Also VERY IMPORTANT is that you stay in a prone position with your head down! Once the procedure is done, you will be told to stay lying down for a while and do yourself a favor and stay there as long as you can! When you go home, don't plan on getting up for anything other than to relieve yourself! You should have someone there to tend to your other needs because you will find out very quickly that if you raise your head...you will get the worst pain you have ever felt! Just keep your head down and you will be fine!
This varies from person to person but on average you should plan on laying low (excuse the pun) for at least 2-3 days and then you are covered but it could extend to 4-5 days depending on how long it take to replenish the fluid in your spine, hence the need to drink all the fluids you can.
Well that's about it in a nutshell! If you have any other questions...just ask ok and I wish you lot's of luck with your LP! Let us know how you make out afterwards ok?
Lots of Hugs,
Rena
GREAT FOR YOU, YOU HAVE A REAL GOOD
NEURO. IT SEEMS HE IS ON THE RITE TRACK.
AS FOR LP TEST, I NEVER HAD ONE. BUT I NO
AFEW PEOPLE HERE HAVE HAD THEM, I AM SURE
SOMEONE WILL POP UP AND GIVE YOU SOME
ANSWERS. YOU HAVE A GREAT DR., GOOD LUCK TO
YOU WITH YOUR LP. HOPE I HELPED.
HUGS
KITT
NEURO. IT SEEMS HE IS ON THE RITE TRACK.
AS FOR LP TEST, I NEVER HAD ONE. BUT I NO
AFEW PEOPLE HERE HAVE HAD THEM, I AM SURE
SOMEONE WILL POP UP AND GIVE YOU SOME
ANSWERS. YOU HAVE A GREAT DR., GOOD LUCK TO
YOU WITH YOUR LP. HOPE I HELPED.
HUGS
KITT
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