Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
OK! HERE'S HOW THAT VISIT WENT & WHAT HE SAID:
As I said, I did NOT go to her looking for, or asking for any neuro... Done gave up! Didn't care!! BUT/HOWEVER..... Since she brought it up & told me that he was new to that area & that he was in the same office as my stupid RA, which I have had it with..... I said, what the hell!? Might as well give it one more shot, see what happens!? I've come this far! Maybe there's a reason that I am suddenly being sent to one that I didn't even want or ask for!? GOD IS FUNNY THAT WAY!!!! HA! HA! LOL :)
So I take a chance & go just to see what will happen & what he will say! So here's how it went! And what he said!
I couldn't remember where my old lists of symptoms & episodes where! And a lot has happened since then anyway! So I made out a new list & also listed episodes in order of happening. I felt that this, hand written, one was much more through!! So I went with that in hand, determined that he was going to read that 1st, before we even got started. I figure I've wasted entirely enough time so!?
Anyway, I had a LONG talk with the nurse up front! She went over why I was there in great detail! I did NOT tell them about any other neuros!! I don't want their horrible attitudes to be carried there! I want his decision or thoughts to be his own! However... I did tell her about my symptoms & episodes somewhat, & did tell her about the 1st family doc that told me point blank that it was MS, & I just needed to go home & deal with it, because my life was going to be SHIT from there on out!
I told her that I had seen him a LOT over the yrs & that he was super intelligent & usually spot on! And that up to this point there had been a total of 6 docs, 1 being him & 2 being Dr. Kouser, my RA, who had told me this!! And how I needed to be seeing a neuro... because I had MS...etc.... Then, I also told her, that my BFF, who was also a PT & my X-PT at that! That she also stood firm in THINKING that!! She used to work with many many MS patients!! That was one of her specialties!!! She is super intelligent & excellent at what she does & up til now has been 100% spot on in her thoughts & beliefs, on pretty much everything, medically speaking!!
IN FACT!!! SHE HAS HAD INTELLIGENCE & IDEALS THAT NONE OF MY DOCTORS HAVE HAD THE GOOD SENSE TO HAVE! SHE'S BEEN SMARTER THEN ALL OF THEM SO FAR!! AND I'D TRUST HER OVER ANY DAMNED DOC!!! Anyway! I told her that she had been my PT, & had known me for years! And had worked with many MS patients as her specialty!! And that as such, she knew a heck of a lot! About MS! AND ME!! And that over all of them I trusted her opinion the most! And that she is firm in her belief that I have MS also!
BUT!? THAT I WAS HERE NOW TO TRY TO FIND OUT 100% FOR SURE! AND THAT THAT WAS I HOPED TO DO WITH THIS DOCTOR!? I also told her that I had written all of the MS related things down & that I fully expected the doctor to go over them well BEFORE he talked with me!!
SHE WAS GREAT!! I LIKED HER!! AND SO SHE DID!! SO!? VISIT WITH HIM NOW!
When I saw him, HE DID HAVE THE LIST WITH HIM & APPARENTLY HE HAD READ IT/THEM!! HOWEVER..... He did NOT say or ask anything about anything on the list! He just started in on instantly going rt into telling me about several MS treatments! Said it was much better to have MS now then it used to be & then he went ON & ON & ON & ON & ON & ON about several specific treatments, all of the injectable ones & then the IV one!
So!? I assumed from that he was saying MS! So I told him that YES! I had had much time to research things & that I had considered all of that just in case, so that my mind would be made up if or when that time came, as to what I wanted to do!? I told him that, for me... it was NOT the avenue that I wanted to pursue!! That I wanted to pursue a much more organic one!!! LIKE.... Diet! Exercise! Groups! Etc....
So then HE TELLS ME..... THAT I NEED TO LEARN TO LISTEN TO MY DOCTOR!!!! AND THAT AS MY DOCTOR HE WAS RECOMMENDING, OR TELLING ME.... THAT I HAD TO TREAT IT IN ONE OF THE FASHIONS THAT HE HAD LAID OUT!!! AND THAT I WAS GOING TO DO ONE OF THEM!!!!! So the fact that he was now ORDERING ME TO DO ONE OF HIS PICKS OR ELSE, DID NOT SET WELL WITH ME!!!
OK! FIRST OFF!!! I WANT TO GET CONFIRMATION OF THIS MS!? BEFORE I DO ANY DAMNED TREATMENTS OF ANY KIND!!!! NOW! Having said that!!! I AM SURE IN MY OWN HEAD!! AND I AM CONVINCED FULLY... IN ME OWN HEAD!!! AND SO IS MY BFF!!! WHO I JUST MET FOR LUNCH & TALKED WITH ABOUT ALL OF IT AGAIN! AND SHE STILL STANDS FIRM ON IT AS WELL!
Even though I do believe that it is that!? I STILL BELIEVE THAT WHATEVER I CHOSE TO DO ABOUT TREATMENT, VS NON-MEDICAL TREATMENT SHOULD BE MY CHOICE!!!! I SHOULD HAVE THE RT TO TO CHOSE ONE, OR TO CHOSE NONE!!! And further more!!! As far as medical treatment goes, I want them to make up their mind if I EVEN HAVE IT OR NOT... BEFORE... THEY GO ON ABOUT TREATMENTS!!!!!
Order the damned Brain & spine MRI's first!! Let's see what they say, & then go from there!!! If there are still no lesions, then I am NOT worried about any of that treatment!! Because whatever I am doing or not doing is working! As far as I am concerned! OR it's one of the 5000 other new things that are mimicing MS rt now!?
ALL I WANT TO DO OR KNOW IS THIS: I WANT TO KNOW IF HE THINKS & IS SET ON MS!? OR SOMETHING ELSE!? IF SO WHAT!? AND THEN I WANT TO DO ALL OF THE MRI'S!!! I DO NOT WANT TO DO ANY LPs!!! LET'S JUST START WITH WHAT HE THINKS MY DX IS & THEN DO THE MRI'S & THEN MEET FOR THAT DISCUSSION AGAIN AFTERWARD!! THEN TAKE IT FROM THERE!
THAT IS ALL I AM INTERESTED IN!!!
RT NOW!? HE IS CONVINCED IT IS MS!! THOUGH I HAD TO GET THAT OUT OF HIS NURSE!! THOUGH I DID GET THAT FROM HIM BY HIS CONTANT PERSISTANT SPENDING MY ENTIRE APPT... GOING OVER THE TREATMENT OPTIONS THAT HE HAD IN HIS OWN HEAD!
HE HAS ORDERED A BRAIN MRI! AND IT IS SCHEDULED ON TR, THE 25TH, THIS COMING WK! AT 4:45! I AM GOING! AND I AM DOING IT! AND I WILL DO THE SPINE, IF NECESSARY!? MRI SPEAKING!
So, in short!? He says I have MS rt now & that he is going to order me to have one of the treatments that he has in his head!! Like it or not! He did NOT talk to me about anything on the paper/s that I had written down! OR about MS verbally! Just the treatment! He did pretty much all of the talking!! NO LISTENING!!! HE DOES NOT WANT TO LISTEN TO ANYTHING OR ANYONE BUT HIMSELF!!! SO AFTER THE MRI'S ARE DONE & I HAVE THE NEW RESULTS I WILL BE DONE WITH HIM!!
I DO NOT WANT ANY DOCTOR WHO SPENDS HIS ENTIRE TIME LISTENING TO HIMSELF TALK & NOT LISTENING TO HIS PATIENT! NOR DO I WANT ANY DOCTOR WHO ORDERS ME TO DO THIS OR THAT, OR ELSE!! IT'S MY BODY!!! I GET A DAMNED SAY SO IN WHAT DOES OR DOES NOT GO INTO, OR HAPPEN TO IT!!
Oh ya! I told him that as soon as they got the results of the MRI could they please please let me know!? And he said: You need to be patient!!! You have waited & suffered all of these years MRS........ so what is a little while longer!!!??? So I got mad & said: EXACTLY!!! I HAVE SUFFERED BADLY & WAITED NEEDLESSLY ALL OF THESE STINKING YEARS!!!! AND THAT THAT IS EXACTLY WHY I DO WANT THE RESULTS OF THE MRI IN A SPEEDY FASHION!! Besides! I did ask very very nicely!! That should count for something!?
I have suffered like hell all of these years!!! All by myself!!! And I have had to suffer at home alone!!! I have been in extreeme financial distress for yrs & am so rt now!!! I have lost my only family!!! My son! And my friends do their best to be nice & to understand, but the fact is, they don't!! And even they, who are wonderful, get really tired of all of it after a while!!
I TOLD HIM, LOOK! I ONLY AGREED TO COME HERE, JUST TO GET SOME ANSWERS! AND ANSWERS ONLY!! I AM NOT INTERESTED IN ANY MS TREATMENTS OF ANY KIND!! I AM NOT INTERESTED IN DOING ANY LP'S!! I AM ONLY INTERESTED IN KNOWING IF YOU THINK OR BELIEVE THIS IS MS OR NOT!! AND IN HAVING THE MRI'S DONE, TO CHECK FOR ANY ABNORMALITIES, OR LESIONS!!! THAT IS IT!!! END OF STORY!!!
So he said!? Well, then! What is the point of coming here if that is all you want!? BECAUSE IT IS MY BODY!!!! AND I HAVE THE RIGHT TO KNOW WHAT IS WRONG WITH IT!!! AND WHAT ALL THIS SHIT IS THAT HAS TOTALLY WRECKED & TORN MY LIFE COMPLETELY UPSIDE DOWN!!!! THAT'S WHY!!!
I'M SORRY FOLKS!! BUT IT'S LIKE SAYING TO A WOMAN; I AM ORDERING YOU TO LOP OFF YOUR BREASTS, BECAUSE I HAVE DECIDED THAT YOU HAVE CANCER & THIS IS WHAT I AM GOING TO DO ABOUT IT!!! AND I DON'T CARE IF YOU LIKE THAT OR NOT! OR WHAT YOU WANT TO DO ABOUT IT! OR HOW YOU WANT TO HANDLE IT!! AND IF YOU DO OR DID NOT WANT TO DO THIS, THEN YOU DON'T NEED TO KNOW IF YOU HAVE CANCER OR NOT & THERE IS NO POINT IN YOU COMING HERE!!
YOU HAVE A RT TO KNOW IF YOU HAVE CANCER OR NOT, REGARLESS OF WHETHER YOU DO CHEMO, OR LOP OFF YOUR BREAST, OR CHOSE TO GO SOME ORGANIC ROUTE!! IT IS YOUR BODY!! YOUR CHOICE!! AND TO SAY ANYTHING ELSE IS JUST TOTALLY REDICULOUS!!! IN MY OPINION!
SORRY THAT THIS WAS LONG! BUT IF I'M GOING TO TELL IT I WANT TO TELL THE WHOLE STORY, NOT JUST A PIECE OF IT!
Thanks guys!
As I said, I did NOT go to her looking for, or asking for any neuro... Done gave up! Didn't care!! BUT/HOWEVER..... Since she brought it up & told me that he was new to that area & that he was in the same office as my stupid RA, which I have had it with..... I said, what the hell!? Might as well give it one more shot, see what happens!? I've come this far! Maybe there's a reason that I am suddenly being sent to one that I didn't even want or ask for!? GOD IS FUNNY THAT WAY!!!! HA! HA! LOL :)
So I take a chance & go just to see what will happen & what he will say! So here's how it went! And what he said!
I couldn't remember where my old lists of symptoms & episodes where! And a lot has happened since then anyway! So I made out a new list & also listed episodes in order of happening. I felt that this, hand written, one was much more through!! So I went with that in hand, determined that he was going to read that 1st, before we even got started. I figure I've wasted entirely enough time so!?
Anyway, I had a LONG talk with the nurse up front! She went over why I was there in great detail! I did NOT tell them about any other neuros!! I don't want their horrible attitudes to be carried there! I want his decision or thoughts to be his own! However... I did tell her about my symptoms & episodes somewhat, & did tell her about the 1st family doc that told me point blank that it was MS, & I just needed to go home & deal with it, because my life was going to be SHIT from there on out!
I told her that I had seen him a LOT over the yrs & that he was super intelligent & usually spot on! And that up to this point there had been a total of 6 docs, 1 being him & 2 being Dr. Kouser, my RA, who had told me this!! And how I needed to be seeing a neuro... because I had MS...etc.... Then, I also told her, that my BFF, who was also a PT & my X-PT at that! That she also stood firm in THINKING that!! She used to work with many many MS patients!! That was one of her specialties!!! She is super intelligent & excellent at what she does & up til now has been 100% spot on in her thoughts & beliefs, on pretty much everything, medically speaking!!
IN FACT!!! SHE HAS HAD INTELLIGENCE & IDEALS THAT NONE OF MY DOCTORS HAVE HAD THE GOOD SENSE TO HAVE! SHE'S BEEN SMARTER THEN ALL OF THEM SO FAR!! AND I'D TRUST HER OVER ANY DAMNED DOC!!! Anyway! I told her that she had been my PT, & had known me for years! And had worked with many MS patients as her specialty!! And that as such, she knew a heck of a lot! About MS! AND ME!! And that over all of them I trusted her opinion the most! And that she is firm in her belief that I have MS also!
BUT!? THAT I WAS HERE NOW TO TRY TO FIND OUT 100% FOR SURE! AND THAT THAT WAS I HOPED TO DO WITH THIS DOCTOR!? I also told her that I had written all of the MS related things down & that I fully expected the doctor to go over them well BEFORE he talked with me!!
SHE WAS GREAT!! I LIKED HER!! AND SO SHE DID!! SO!? VISIT WITH HIM NOW!
When I saw him, HE DID HAVE THE LIST WITH HIM & APPARENTLY HE HAD READ IT/THEM!! HOWEVER..... He did NOT say or ask anything about anything on the list! He just started in on instantly going rt into telling me about several MS treatments! Said it was much better to have MS now then it used to be & then he went ON & ON & ON & ON & ON & ON about several specific treatments, all of the injectable ones & then the IV one!
So!? I assumed from that he was saying MS! So I told him that YES! I had had much time to research things & that I had considered all of that just in case, so that my mind would be made up if or when that time came, as to what I wanted to do!? I told him that, for me... it was NOT the avenue that I wanted to pursue!! That I wanted to pursue a much more organic one!!! LIKE.... Diet! Exercise! Groups! Etc....
So then HE TELLS ME..... THAT I NEED TO LEARN TO LISTEN TO MY DOCTOR!!!! AND THAT AS MY DOCTOR HE WAS RECOMMENDING, OR TELLING ME.... THAT I HAD TO TREAT IT IN ONE OF THE FASHIONS THAT HE HAD LAID OUT!!! AND THAT I WAS GOING TO DO ONE OF THEM!!!!! So the fact that he was now ORDERING ME TO DO ONE OF HIS PICKS OR ELSE, DID NOT SET WELL WITH ME!!!
OK! FIRST OFF!!! I WANT TO GET CONFIRMATION OF THIS MS!? BEFORE I DO ANY DAMNED TREATMENTS OF ANY KIND!!!! NOW! Having said that!!! I AM SURE IN MY OWN HEAD!! AND I AM CONVINCED FULLY... IN ME OWN HEAD!!! AND SO IS MY BFF!!! WHO I JUST MET FOR LUNCH & TALKED WITH ABOUT ALL OF IT AGAIN! AND SHE STILL STANDS FIRM ON IT AS WELL!
Even though I do believe that it is that!? I STILL BELIEVE THAT WHATEVER I CHOSE TO DO ABOUT TREATMENT, VS NON-MEDICAL TREATMENT SHOULD BE MY CHOICE!!!! I SHOULD HAVE THE RT TO TO CHOSE ONE, OR TO CHOSE NONE!!! And further more!!! As far as medical treatment goes, I want them to make up their mind if I EVEN HAVE IT OR NOT... BEFORE... THEY GO ON ABOUT TREATMENTS!!!!!
Order the damned Brain & spine MRI's first!! Let's see what they say, & then go from there!!! If there are still no lesions, then I am NOT worried about any of that treatment!! Because whatever I am doing or not doing is working! As far as I am concerned! OR it's one of the 5000 other new things that are mimicing MS rt now!?
ALL I WANT TO DO OR KNOW IS THIS: I WANT TO KNOW IF HE THINKS & IS SET ON MS!? OR SOMETHING ELSE!? IF SO WHAT!? AND THEN I WANT TO DO ALL OF THE MRI'S!!! I DO NOT WANT TO DO ANY LPs!!! LET'S JUST START WITH WHAT HE THINKS MY DX IS & THEN DO THE MRI'S & THEN MEET FOR THAT DISCUSSION AGAIN AFTERWARD!! THEN TAKE IT FROM THERE!
THAT IS ALL I AM INTERESTED IN!!!
RT NOW!? HE IS CONVINCED IT IS MS!! THOUGH I HAD TO GET THAT OUT OF HIS NURSE!! THOUGH I DID GET THAT FROM HIM BY HIS CONTANT PERSISTANT SPENDING MY ENTIRE APPT... GOING OVER THE TREATMENT OPTIONS THAT HE HAD IN HIS OWN HEAD!
HE HAS ORDERED A BRAIN MRI! AND IT IS SCHEDULED ON TR, THE 25TH, THIS COMING WK! AT 4:45! I AM GOING! AND I AM DOING IT! AND I WILL DO THE SPINE, IF NECESSARY!? MRI SPEAKING!
So, in short!? He says I have MS rt now & that he is going to order me to have one of the treatments that he has in his head!! Like it or not! He did NOT talk to me about anything on the paper/s that I had written down! OR about MS verbally! Just the treatment! He did pretty much all of the talking!! NO LISTENING!!! HE DOES NOT WANT TO LISTEN TO ANYTHING OR ANYONE BUT HIMSELF!!! SO AFTER THE MRI'S ARE DONE & I HAVE THE NEW RESULTS I WILL BE DONE WITH HIM!!
I DO NOT WANT ANY DOCTOR WHO SPENDS HIS ENTIRE TIME LISTENING TO HIMSELF TALK & NOT LISTENING TO HIS PATIENT! NOR DO I WANT ANY DOCTOR WHO ORDERS ME TO DO THIS OR THAT, OR ELSE!! IT'S MY BODY!!! I GET A DAMNED SAY SO IN WHAT DOES OR DOES NOT GO INTO, OR HAPPEN TO IT!!
Oh ya! I told him that as soon as they got the results of the MRI could they please please let me know!? And he said: You need to be patient!!! You have waited & suffered all of these years MRS........ so what is a little while longer!!!??? So I got mad & said: EXACTLY!!! I HAVE SUFFERED BADLY & WAITED NEEDLESSLY ALL OF THESE STINKING YEARS!!!! AND THAT THAT IS EXACTLY WHY I DO WANT THE RESULTS OF THE MRI IN A SPEEDY FASHION!! Besides! I did ask very very nicely!! That should count for something!?
I have suffered like hell all of these years!!! All by myself!!! And I have had to suffer at home alone!!! I have been in extreeme financial distress for yrs & am so rt now!!! I have lost my only family!!! My son! And my friends do their best to be nice & to understand, but the fact is, they don't!! And even they, who are wonderful, get really tired of all of it after a while!!
I TOLD HIM, LOOK! I ONLY AGREED TO COME HERE, JUST TO GET SOME ANSWERS! AND ANSWERS ONLY!! I AM NOT INTERESTED IN ANY MS TREATMENTS OF ANY KIND!! I AM NOT INTERESTED IN DOING ANY LP'S!! I AM ONLY INTERESTED IN KNOWING IF YOU THINK OR BELIEVE THIS IS MS OR NOT!! AND IN HAVING THE MRI'S DONE, TO CHECK FOR ANY ABNORMALITIES, OR LESIONS!!! THAT IS IT!!! END OF STORY!!!
So he said!? Well, then! What is the point of coming here if that is all you want!? BECAUSE IT IS MY BODY!!!! AND I HAVE THE RIGHT TO KNOW WHAT IS WRONG WITH IT!!! AND WHAT ALL THIS SHIT IS THAT HAS TOTALLY WRECKED & TORN MY LIFE COMPLETELY UPSIDE DOWN!!!! THAT'S WHY!!!
I'M SORRY FOLKS!! BUT IT'S LIKE SAYING TO A WOMAN; I AM ORDERING YOU TO LOP OFF YOUR BREASTS, BECAUSE I HAVE DECIDED THAT YOU HAVE CANCER & THIS IS WHAT I AM GOING TO DO ABOUT IT!!! AND I DON'T CARE IF YOU LIKE THAT OR NOT! OR WHAT YOU WANT TO DO ABOUT IT! OR HOW YOU WANT TO HANDLE IT!! AND IF YOU DO OR DID NOT WANT TO DO THIS, THEN YOU DON'T NEED TO KNOW IF YOU HAVE CANCER OR NOT & THERE IS NO POINT IN YOU COMING HERE!!
YOU HAVE A RT TO KNOW IF YOU HAVE CANCER OR NOT, REGARLESS OF WHETHER YOU DO CHEMO, OR LOP OFF YOUR BREAST, OR CHOSE TO GO SOME ORGANIC ROUTE!! IT IS YOUR BODY!! YOUR CHOICE!! AND TO SAY ANYTHING ELSE IS JUST TOTALLY REDICULOUS!!! IN MY OPINION!
SORRY THAT THIS WAS LONG! BUT IF I'M GOING TO TELL IT I WANT TO TELL THE WHOLE STORY, NOT JUST A PIECE OF IT!
Thanks guys!
Doctors are not gods. They call it practicing for a reason.
Also----it was amazing to read your story. I just had my primary care dr drop me because I would not do all these stupid bone scans to see if I have osteoporosis. I am MORE worried about the PD or MS. He said in his letter that I was not following his instructions----HELLO it is MY body. He also INSISTS I have diabetes and I test myself all the time and it is within normal range....he is a nutcase.
What in the world do these drs think they are doing telling us what to do----I changed drs and this one wanted me to add more meds and lower doses on the ones for my thyroid. I have done all my research and know what is working for ME----so I am standing firm this time too. She seems to be willing to work with me on it -- so far. I have no patience at all and am so sick of drs---I could write a book at all the craziness I have had happen to me. Including one tell me in the ER when I smashed my shoulder that if I didn't go to sleep from the meds they gave me I would die like Michael Jackson. I BLEW up at him big time.......LOL and told him I was going to sue his pants off unless he got me an orthopedic dr and anesthesiologist right away. My shoulder ended up with pins, mesh and much hardware during a long surgery......I know how you feel.
When I was DX of course I was scared and they got me right on copaxone. I changed Neuros because the previous one did not even mark in my records he put me on copaxone. He called me and said make an appointment we need to talk about a treatment. Never went back.
I was referred to a wonderful Neuro per everyone! Which she is, very smart with the brain. She looks at my MRI and said we need to be more aggressive and ordered tysabri I tested positive for jc virus and she still gave permission for 2 yrs of treatment. I decided to try it.
Well after 2 months I was so sad I mean really sad and I'm normally very upbeat. I cried all day was depressed & anxious it was HORRIBLE. My Family doctor added more meds for anxiety +.
We had to leave town and I missed my 4th infusion. Well I started feeling so well full of energy on and on. My Family noticed, wow look at you. So now I:m not sure what to do. In June I was scheduled for a mri, cancelled it.
I have been taking extra vitamins and not really sure what to do. If I get another MRI and it's worse I won't take those infusions I felt like it was poisoning me. Course there's more to that.
Just google biogen stock they are in the billions.
My Neuro has one building half is the Dr. other half is the infusion center. $$$$$$$$$$$$$$$$$$
And I'm just stating my feelings nothing against anyone who takes these, they just made me worse.
So now July 22 2013. ???? anyone who has been in my situation or has any advice please reply because I need it.
Hugs to you all
You have a right to your medical records. If you don't want to wait for the neuro to read your MR, simply fill out a records request at the place you had the MRI done. You should be able to get it within 24 hours or so. Don't mention the neuro who ordered it; just say you need the report to take to a consult. The report should say in pretty clear English if the scan confirms an MS diagnosis, does not support the diagnosis, or is uncertain.
Can your friend the PT recommend a neurologist? Maybe one her patients liked?
You are right -- you certainly don't have to do any MS therapies. The doctor can't "order" you do do anything. It's possible that something might make you feel better -- but the only way to find out is to try it. Nobody can make you do it. Maybe for now, all you want to do is some PT, or some yoga and stretching, or some meditation. All those things have been shown to have a positive impact on MS, too. Vitamins, like D and B-complex, might also help. You have a lot of choices -- make positive ones, that help YOU!