Aa
If it quacks like a duck...l
I laughed out loud when he said that while looking at my brain MRI, having read it so often here on the forum.
Looks like I'm in the "probable MS" category. I have definite MS lesions, as well as some non-specific ones. He said "classic MS, I don't know how they could miss it", then mentioned that the non-specific ones could be another source, or atypical MS, I could have a combination.
He made it clear, when taking my history (and having to interupt me when I said more that brief answers) that he thought my MS most likely started many years ago, perhaps as far back as the vertigo in 1988. He said that he doubted my bladder issues were interstitial cystitis, when I told him that my uro-gyno thought it was an incomplete diagnosis. He doubted I had meralgia parasthetica; it was most likely a part of the whole right-sided nerve pain thing I have going on, and so much more.
My neuro exam was pretty normal, I believe, except something about a pale disc in my right eye and my left pupil reacting differently, so that he had the intern test it, then showed her again his findings, I still have spots in front of my eyes from those lights, lol!
This man is crazy brilliant, professional, compassionate, but not pulling any punches. I was impressed and stunned. I'm still processing everything, but had to come on and post.
We went back to his (wonderfully decorated) office, and he layed things out for me. I apparently have non-specific symptoms, too, and I use hyperbole, that they are very busy, and much as it is his life to help people with MS, they don't have time to listen to every little thing. He hadn't even seen my Timeline, lol!
He told me my options; wait and watch, or start on a DMD, etc. He told me that Tysabri wasn't an option for me, that all but Copaxone were a difficult choice for me because of my history of depression; they can bring it back, worsen what i may be experiencing from time to time.
He told me to go and think about what he had told me, and that he would look forward to hearing from me. He didn't want me to make a decision right away.
I said "What?"
Apparently, there isn't enough evidence to diagnose me at this time, but he's willing to start Copaxone if I choose to. Of course, I can't do that without a diagnosis, so I was stunned. I asked him if I wasn't to make a follow up appointment, and he told me to go think about everything, and give him a call, and we would set up a time to meet. I had to wait 6 months for this appointment, so I'm flabbergasted, but thinking deeply.
I have been so burnt, I thought the worst, doubted myself, and went through all the stages of grief in an hour or so. I thought, gee, it is time to take a step back, stop pushing, take a deep breath, and practice some radical acceptance.
Maybe when he gets more accustomed to the OHSU software, he'll count up 9 MS lesions, or something.
BTW, the OHSU radiologists WERE wrong about my spinal lesions, just as my original neuro-radiologist said. Dr. C. seemed disgusted by the quality of the spinal portions of the MRIs, said they could have done better quality! At least he knows I wasn't exagerating about the quality issues; he thought there wasn't any thoracic films, then looked at my report when I told him it was all on the same CD, and said they were all there. So, he'll take a look at the thoracic, though he thinks it's the same mistake there as on the cervical that the OHSU radiologists made.
OK, enough for now. I was going to just write a short note!
Thanks for all of you concerned about me and eager for news. Kinda good news/bad news, but at least its news, and not same-old - same-old!
Kathy
Looks like I'm in the "probable MS" category. I have definite MS lesions, as well as some non-specific ones. He said "classic MS, I don't know how they could miss it", then mentioned that the non-specific ones could be another source, or atypical MS, I could have a combination.
He made it clear, when taking my history (and having to interupt me when I said more that brief answers) that he thought my MS most likely started many years ago, perhaps as far back as the vertigo in 1988. He said that he doubted my bladder issues were interstitial cystitis, when I told him that my uro-gyno thought it was an incomplete diagnosis. He doubted I had meralgia parasthetica; it was most likely a part of the whole right-sided nerve pain thing I have going on, and so much more.
My neuro exam was pretty normal, I believe, except something about a pale disc in my right eye and my left pupil reacting differently, so that he had the intern test it, then showed her again his findings, I still have spots in front of my eyes from those lights, lol!
This man is crazy brilliant, professional, compassionate, but not pulling any punches. I was impressed and stunned. I'm still processing everything, but had to come on and post.
We went back to his (wonderfully decorated) office, and he layed things out for me. I apparently have non-specific symptoms, too, and I use hyperbole, that they are very busy, and much as it is his life to help people with MS, they don't have time to listen to every little thing. He hadn't even seen my Timeline, lol!
He told me my options; wait and watch, or start on a DMD, etc. He told me that Tysabri wasn't an option for me, that all but Copaxone were a difficult choice for me because of my history of depression; they can bring it back, worsen what i may be experiencing from time to time.
He told me to go and think about what he had told me, and that he would look forward to hearing from me. He didn't want me to make a decision right away.
I said "What?"
Apparently, there isn't enough evidence to diagnose me at this time, but he's willing to start Copaxone if I choose to. Of course, I can't do that without a diagnosis, so I was stunned. I asked him if I wasn't to make a follow up appointment, and he told me to go think about everything, and give him a call, and we would set up a time to meet. I had to wait 6 months for this appointment, so I'm flabbergasted, but thinking deeply.
I have been so burnt, I thought the worst, doubted myself, and went through all the stages of grief in an hour or so. I thought, gee, it is time to take a step back, stop pushing, take a deep breath, and practice some radical acceptance.
Maybe when he gets more accustomed to the OHSU software, he'll count up 9 MS lesions, or something.
BTW, the OHSU radiologists WERE wrong about my spinal lesions, just as my original neuro-radiologist said. Dr. C. seemed disgusted by the quality of the spinal portions of the MRIs, said they could have done better quality! At least he knows I wasn't exagerating about the quality issues; he thought there wasn't any thoracic films, then looked at my report when I told him it was all on the same CD, and said they were all there. So, he'll take a look at the thoracic, though he thinks it's the same mistake there as on the cervical that the OHSU radiologists made.
OK, enough for now. I was going to just write a short note!
Thanks for all of you concerned about me and eager for news. Kinda good news/bad news, but at least its news, and not same-old - same-old!
Kathy
Congrats on the good doctor! I'm envious. I am so glad that you are starting to get some validation and good care.
Keep us updated!
Heather
Keep us updated!
Heather
Ha ha!
Dr. C. doesn't know yet that I'm signed up for the meds through Shared Solutions; I asked them not to request a Rx since I had called to research the possibilites, and had not yet told the Dr. if I had decided to take it. If they do contact him, I hope he takes it with good humor. :o}
I think I'll call tomorrow to schedule an appointment. I was going to wait to see my chart notes, but I'm sure I'll get them before my appointment. so why wait to schedule it?
Hugs back at you!
Kathy
Dr. C. doesn't know yet that I'm signed up for the meds through Shared Solutions; I asked them not to request a Rx since I had called to research the possibilites, and had not yet told the Dr. if I had decided to take it. If they do contact him, I hope he takes it with good humor. :o}
I think I'll call tomorrow to schedule an appointment. I was going to wait to see my chart notes, but I'm sure I'll get them before my appointment. so why wait to schedule it?
Hugs back at you!
Kathy
Hey Kath,
Wow, what an appt. Sorry to chime in so late - I was wondering how you made out (and you already know I couldnt' find your update) and here now your already signed up for meds! My gosh!
But, good for you Kath. Glad you found the right Dr. and hopefully the copax will work magic on your lesions and if something else comes along to muddy the waters (those non-specifics) well, you'll cross that bridge when you get to it - I know you will! Don't worry, we'll not let you do any advance wondering..ha/ha.
(((big hugs))
-shell
Wow, what an appt. Sorry to chime in so late - I was wondering how you made out (and you already know I couldnt' find your update) and here now your already signed up for meds! My gosh!
But, good for you Kath. Glad you found the right Dr. and hopefully the copax will work magic on your lesions and if something else comes along to muddy the waters (those non-specifics) well, you'll cross that bridge when you get to it - I know you will! Don't worry, we'll not let you do any advance wondering..ha/ha.
(((big hugs))
-shell
I am sure you are anxious to get that follow up appt. I know I would be. Seems you have a big decision to make.
The good thing about that is there are a lot of ppl here to discuss it with.
way to go,
terry
The good thing about that is there are a lot of ppl here to discuss it with.
way to go,
terry
Thank you so much for your support, advice, experiences, information, hugs, welcome to the "probable" club, etc. :o)
I actually managed to sleep like a log last night; thought I'd be awake thinking. I guess getting this much validation and progress was relaxing in itself!
It was wonderful to turn on the computer this morning and find all your posts. I also wrote an e-mail to Dr. C.'s assistant about getting my chart notes, and got a quick reply that she had already mailed my release of information form, how to send it back to her, and that she would give me a call when the chart notes were ready. She is so nice!
Then I can see what was written about my lesions, exam, and all that: help reinforce my memory. Maybe help me in my decision - making process.
I called Shared Solutions today, just to ask a few questions, and I'm signed up, status pending, and I discovered that with my insurance and extra help from the State, my monthly co-pay for Copaxone should be around $6.00, $0 during the "donut hole", since the state covers that gap totally, 0 co-pays. OMG! OK, calmly assimilating this information....
Kathy
I actually managed to sleep like a log last night; thought I'd be awake thinking. I guess getting this much validation and progress was relaxing in itself!
It was wonderful to turn on the computer this morning and find all your posts. I also wrote an e-mail to Dr. C.'s assistant about getting my chart notes, and got a quick reply that she had already mailed my release of information form, how to send it back to her, and that she would give me a call when the chart notes were ready. She is so nice!
Then I can see what was written about my lesions, exam, and all that: help reinforce my memory. Maybe help me in my decision - making process.
I called Shared Solutions today, just to ask a few questions, and I'm signed up, status pending, and I discovered that with my insurance and extra help from the State, my monthly co-pay for Copaxone should be around $6.00, $0 during the "donut hole", since the state covers that gap totally, 0 co-pays. OMG! OK, calmly assimilating this information....
Kathy
It's so good to read some "Kinda good news/bad news, but at least its news"! I can sense the excitement of finally making some progress, so I am happy for you.
I am in the same exact place - not 100% sure that it's MS, but I have an understanding doctor who will approve a DMD if I so choose, just based on my non-specific MRI + symptoms. She has also ordered some more tests, so I have decided to proceed with them and then reevaluate where I am at.
I will be interested to know what you decide after it all sinks in.
Big hugs,
Laurel
I am in the same exact place - not 100% sure that it's MS, but I have an understanding doctor who will approve a DMD if I so choose, just based on my non-specific MRI + symptoms. She has also ordered some more tests, so I have decided to proceed with them and then reevaluate where I am at.
I will be interested to know what you decide after it all sinks in.
Big hugs,
Laurel
What a good doctor he sounds like. Straightforward, not fooling around, not dancing around...not in any way, about the good or the bad or the ugly. Talking to you like you're a rational adult who can process his information and act accordingly. Amazing. Let it sink in. Give it some time. Ask Quix and others a bunch of questions.
And welcome to the "probable" club.
Bio
And welcome to the "probable" club.
Bio
I'm so glad you have some answers, and found a Dr that will listen and explain things too you. It sounds like you have some decision to make now too... it will take a few days or more to sink in... but it will.
If you find it hard to make any decision, make an appt with him to discuss more.. Find out what is next .. I'm glad you have answers... and someone to listen
take care and let us know how things progress
wobbly
If you find it hard to make any decision, make an appt with him to discuss more.. Find out what is next .. I'm glad you have answers... and someone to listen
take care and let us know how things progress
wobbly
It sounds like you really made some progress with this latest appointment. If you do decide to choose a DMD and dealing with the prospects of depression, I WOULD recommend Copaxone. OR, if you want to take one of the Interferons, he could put you on an anti-depressant as a precautionery measure. Also keeping a close watch for mood problems that don't seem to be helped by the drug he puts you on (for depression) Sometimes it takes some experimenting with the anti-depressants, to find one that has the least side effects for you and does the job of keeping your depression in check.
Even though I do suffer from depression, I never have any problems with increased depression, while on Avonex for three years. I had zero progression in my lesions, while taking Avonex. I just couldn't deal with the flu-like side effects for 3-4 days after the injection. That's the only reason I gave it up. It was a good drug, in helping keep my MS at bay.
Let us know what you decide, dearheart. I am glad you at least have a doctor that is on top of things. He may sound "iffy" at times, but he does seem to be taking the interest in your case, like ALL doctor's should.
Big Forum Hugs,
Heather
Even though I do suffer from depression, I never have any problems with increased depression, while on Avonex for three years. I had zero progression in my lesions, while taking Avonex. I just couldn't deal with the flu-like side effects for 3-4 days after the injection. That's the only reason I gave it up. It was a good drug, in helping keep my MS at bay.
Let us know what you decide, dearheart. I am glad you at least have a doctor that is on top of things. He may sound "iffy" at times, but he does seem to be taking the interest in your case, like ALL doctor's should.
Big Forum Hugs,
Heather
Well it sounds like he is a keeper! Yay!!! Take some time to reflect on your appointment and think about all he said. Plus, it sounds like he still has some MRIs to look at, so there are still things for him to review.
I am glad that you finally have been heard by someone who sounds like a real winner!
Hugs,
Chrisy
I am glad that you finally have been heard by someone who sounds like a real winner!
Hugs,
Chrisy
I encourage you to think about Copaxone. My neuro put me on it and I do believe it has made a difference. He wrote me up as Possible MS as my leisions do not sit where Old McDonald says they should. Some day I hope that the McDonald criteria gets rewritten or thrown out. It's keeping a lot of people from getting the treatment they need for MS.
It took me about 2 months on the drug before I realized that I was no longer walking into walls, falling down, etc. While I'm not ready to celebrate yet, I have far more hope than I've had in a long time. I do remember symptoms that go back many years, but wanted to try Copaxone anyway. By the way, my brain fog has lifted and my memory is better..that's a big one for me. He told me that Copaxone wouldn't hurt me if I wanted to stay on it for a while and might do some good-he couldn't say. So far, so good. I've really had no side effects from it and so I'm doing the shots @ morning. I think it's possible that I am in a remission and hope that Copaxone will extend it for some time.
It sounds like you have a good neuro to help you. Charley
It took me about 2 months on the drug before I realized that I was no longer walking into walls, falling down, etc. While I'm not ready to celebrate yet, I have far more hope than I've had in a long time. I do remember symptoms that go back many years, but wanted to try Copaxone anyway. By the way, my brain fog has lifted and my memory is better..that's a big one for me. He told me that Copaxone wouldn't hurt me if I wanted to stay on it for a while and might do some good-he couldn't say. So far, so good. I've really had no side effects from it and so I'm doing the shots @ morning. I think it's possible that I am in a remission and hope that Copaxone will extend it for some time.
It sounds like you have a good neuro to help you. Charley
Wow! So you have been dealing with this as long as me without a dx. Mine also started in 88 with me going on LTD and SSDI in 89. Maybe there is hope that I will also get my Dx soon.
Take care and reflect on what the Dr. had to say. He sounds like a real keeper!
Dennis
Take care and reflect on what the Dr. had to say. He sounds like a real keeper!
Dennis
I'm glad you're getting answers, Kathy. It sounds like the doctor is good (even if a bit brusque) and you're getting the answers and treatment (!) you need.
I'm glad for you.
Stephanie
I'm glad for you.
Stephanie
I'm thrilled for you--I was so worried! I was so afraid to check the forum. I thought it was bad news . . . So much for positive thinking!
By the time I was diagnosed, I probably have had MS for years. I started Copaxone in March 2008, and I'm doing better (see disappearing lesions discussion). When I first saw the neurologist, he diagnosed me as having demyelinating disease. Six months later, it was an MS diagnosis. If he feels strongly enough to discuss Copaxone, I believe he's about 95% sure you have MS and that it may help you.
Have you had ON? The pale disc thing in your eye (with the unequal reaction of your pupils) sounds like it. It even sounds like you may have it now. My discs are no longer pale, after having had ON, but pretty and pink according to the opthamologist. Also, I did have unequal reacting pupils at the time of diagnosis of ON, but no longer have that either. So, my question is whether or not you're having trouble with your eyes right now . . .
I better go to work. I just wanted to check on what happened at your appointment.
Deb
By the time I was diagnosed, I probably have had MS for years. I started Copaxone in March 2008, and I'm doing better (see disappearing lesions discussion). When I first saw the neurologist, he diagnosed me as having demyelinating disease. Six months later, it was an MS diagnosis. If he feels strongly enough to discuss Copaxone, I believe he's about 95% sure you have MS and that it may help you.
Have you had ON? The pale disc thing in your eye (with the unequal reaction of your pupils) sounds like it. It even sounds like you may have it now. My discs are no longer pale, after having had ON, but pretty and pink according to the opthamologist. Also, I did have unequal reacting pupils at the time of diagnosis of ON, but no longer have that either. So, my question is whether or not you're having trouble with your eyes right now . . .
I better go to work. I just wanted to check on what happened at your appointment.
Deb
Wow, this appointment went very well all in all like you said. You finally found someone with a backbone. Let's see where this goes and when you can get back in to see him to discuss where to go from here. I trust this guy and I'm sure you do to and he is just what you needed right now.
I bet you won't have to wait that long for a follow-up appointment now that you are on his cae load.
Overall, very good appointment indeed. I hope you know that you found a good guy who will see you through this diagnosis. How are you handling all this?
Love and hugs to you brave lady,
Julie
I bet you won't have to wait that long for a follow-up appointment now that you are on his cae load.
Overall, very good appointment indeed. I hope you know that you found a good guy who will see you through this diagnosis. How are you handling all this?
Love and hugs to you brave lady,
Julie
Hi there,
I am so glad that your appointment went well, although I guess it gave you some stuff to digest as well.
So you have been dealing with all this for 21 years, wow, it must feel good to get some validation. I think I would be confused too about if to take the meds or not. Just do heaps of research and ask lots of questions and if you trust this Dr be guided by what he tells you. Sounds like you were lucky to get in.
Thinking of you,
Udkas.
I am so glad that your appointment went well, although I guess it gave you some stuff to digest as well.
So you have been dealing with all this for 21 years, wow, it must feel good to get some validation. I think I would be confused too about if to take the meds or not. Just do heaps of research and ask lots of questions and if you trust this Dr be guided by what he tells you. Sounds like you were lucky to get in.
Thinking of you,
Udkas.
COMMUNITY LEADER
Hey Kathy,
Thats great good news / bad news, great news for the validation and excellent dr, the bad news speaks for its self. I was just reading about copaxone being aproved for people who only had 1 isolated insident not the mc 2 and those with probable MS because the stats indicate it does reduce the rate of a relapse, which in itself reduces the amount of disability. IF it holds off another relapse for you its worth taking in my humble opinion, i'm about ready to do anything if it meant i didn't have to go through the last 6 months all over again. I hear dancing nakid on a full moon night has little effect, pitty i was just about to try that :-)
Peace and Harmony whilst your brain catches up with the news, 21 years is a heck of a long wait!!!!
Cheers......JJ
Thats great good news / bad news, great news for the validation and excellent dr, the bad news speaks for its self. I was just reading about copaxone being aproved for people who only had 1 isolated insident not the mc 2 and those with probable MS because the stats indicate it does reduce the rate of a relapse, which in itself reduces the amount of disability. IF it holds off another relapse for you its worth taking in my humble opinion, i'm about ready to do anything if it meant i didn't have to go through the last 6 months all over again. I hear dancing nakid on a full moon night has little effect, pitty i was just about to try that :-)
Peace and Harmony whilst your brain catches up with the news, 21 years is a heck of a long wait!!!!
Cheers......JJ
He didn't come out and say that, just stuff about the McDonald Criteria, and how difficult it was to fulfill without losing your sight or use of a limb. I will give myself some time to process all this, do some meditation, then call about a follow-up. I'll ask about whether the DMD would be helpful if I've truly had MS this long. If so, I'll see if he can get it approved, if he's pretty sure. I want to try and stop it or slow it down, if possible.
I think he's still processing all my stuff, too; he mentioned how complicated it was by other issues, and how many of the other issues might be a part of this. He seems like the guy for the job of figuring it out.
Thanks Quix,
Kathy
I think he's still processing all my stuff, too; he mentioned how complicated it was by other issues, and how many of the other issues might be a part of this. He seems like the guy for the job of figuring it out.
Thanks Quix,
Kathy
Phrased that way, I would say that he feels pretty strongly that it is. This really is the kind of meeting you were hoping for. I'm glad it finally happened. Did he say that he can't give you an actual diagnosis yet? If not, he of all people should be able to write what is necessary to get approved for Copaxone.
A question I would put to him is whether he believes the use of the DMD would be useful if you are really 21 years into this disease.
You know I'm thinking about you.
Quix
A question I would put to him is whether he believes the use of the DMD would be useful if you are really 21 years into this disease.
You know I'm thinking about you.
Quix
I agree; he is an excellent doctor, and his honesty will do me some good.
He said that same things about the other docs as a preface to telling me some facts about me, which I accepted calmly, even if my eyes got a bit moist.
I asked him if he considered it "probable MS", and he said "yes".
Kathy
He said that same things about the other docs as a preface to telling me some facts about me, which I accepted calmly, even if my eyes got a bit moist.
I asked him if he considered it "probable MS", and he said "yes".
Kathy
Okay. What he is saying is that "statistically you have MS" but it is not a perfect slam dunk. It is normal to consider DMDs in this situation, but they can't promise 100% that this is MS. All in all, he is pretty sure that this IS MS, but is seeing all the atypical stuff also. He truly was being honest and not sugar-coating.
I agree with the discussion about DMDs re: Copaxone.
You do have a tendency toward hyperbole which makes you so entertaining to read, but it can be off-put to docs that are looking for just the facts. That may have stood in the way with some of your earlier doctors.
Still, I think he called it with the exact certainty he has. Did he say probable MS or was that your conclusion?
All in all I think you have your answers.
Quix
I agree with the discussion about DMDs re: Copaxone.
You do have a tendency toward hyperbole which makes you so entertaining to read, but it can be off-put to docs that are looking for just the facts. That may have stood in the way with some of your earlier doctors.
Still, I think he called it with the exact certainty he has. Did he say probable MS or was that your conclusion?
All in all I think you have your answers.
Quix
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