I haven’t posted much but I read everyone’s posts daily. And I have learned a lot from all of you! Here is what’s been going on with me...
For the past six years I’ve been traveling three hours to Albuquerque to see a neurologist at UNM (not an MS clinic). I have been seen by four different doctors, none of them MS specialists, because one by one, they leave the clinic for whatever reason. My current neuro is a nice enough man, but not being an MS specialist, doesn’t offer me any options.
He has now diagnosed me with SPMS. He spent time with me to go over my latest MRIs, and ended the visit by saying that I am doing “remarkably well” for someone that has had MS for 26 years.
Well, I don’t feel remarkably well!! In the past five years I have progressed quite a bit. It started with a slight limp, and now I use a rollator. I have fallen frequently (including off of my horse twice, so I no longer ride 😪). I have tremendous pain, spasticity, dystonia (curling toes), incontinence issues, numbness, blah blah blah. You get the picture - I’m starting to progress rapidly. And depression will be next, which I’m desperately trying to fight off.
So at my last visit I asked about Ocrevus. He very matter of factly replied I wasn’t a candidate for that because I am SPMS. But I shouldn’t worry because they are working on a lot of great things in MS research and there would probably be something coming for SPMS in the next TEN YEARS!!! Ten years is a long time for this evil disease to wreak havoc on my body! I don’t think I can wait that long.
After that visit, I went home pretty dejected, and immediately went online to research. I notice many of you with SPMS are on Ocrevus with good results so far. That’s when I decided to fire him and find an MS clinic with MS specialists. I just refuse to give up that easily - I’m sure many of you can understand!
I found a clinic up in Denver - Rocky Mountain MS Center. It will be a 4 1/2 hour drive instead of three, which means two overnight hotel stays, but I’ve decided it’s worth it and I have an appointment September 11th!
I’m very excited to hear what my new specialist has to say. It’s been a long time since I’ve had to “start over” with a new doctor though. If anyone has any advice or tips for me I very much welcome them! Thanks to all of you just for being here. I really need your support.
Sounds like you made the right decision to fire that dr. Sorry you have to drive so far though. I have to drive 2 hours to get to mine. I love my neuro, she takes all the time you need & doesn't rush through to the next patient. She's not an MS specialist but is a good neuro. She's the second one I've been to since my dx in 2005. My first neuro was an MS specialist but didn't take the time to listen to me cuz he knew all about MS. He didn't believe me when I told him I have spasms in my diaphragm that makes me breathe a few rapid breaths periodically. Then he asked me how I knew about pseudo-exacerbations. I told him I read a lot & have been doing a lot of research on the internet about MS. He told me not to believe what I read on the internet. The worst part of seeing him was the wait in the waiting room. If your appt. was at 10 am you are lucky if you get into a room by 11 am & see the dr by 12 pm. It was ridiculous. My current neuro I may have to wait 10 min. at the most before I'm called back. Good luck with your new neuro!
Wow - I would go crazy without the internet to look things up! In fact, when I was diagnosed back in 1992, the internet was pretty new and not much out there yet, so I had to go to the library to research my MS diagnosis. Boy, that makes me sound old - I’m only 53! Thanks for your response, and I’m glad you love your neuro!
Taosgirl you and I have very similar circumstances. My Neuro told me to go out and find a new Neurologist because he's retiring and that I would need someone who specializes in MS since I also have SPMS. I just turned 55 was never treated with a DMT until last year when all hell broke out but I was diagnosed with MS in 1991. Where I live there are no MS clinics unless I have someone drive me 4 hours. I'm overwhelmed with the progression. I desperately need guidance. Sorry about the rant on your post but reading your post was like a slap in the face that I need help really need help.
I truly wish you the very best!
I'm also going to try to get better MS care before I get distracted and do nothing.
KC0808 , feel free to rant if you need to! You and I do have a lot in common, and these boards are a good place to realize we are NOT alone. I’ve been feeling, as you said, overwhelmed with the progression, too. And, being the stubborn bitch that I sometimes am, decided to find a way to take care of myself while I still can. Do you know someone that can drive you the four hours to the clinic?
Sometimes we just need a little encouragement, which I find from the people that share here. I pray that you and I both get the help that we need! Like Fancy1959 always says, together we are stronger!!
We stubborn bitches must stick together I'm going to do everything I possibly can to take better care of me which of course means getting off my As* and just stop with not making myself a priority. I wish you the very best and I'm really glad you verbalized the way you did or I might have overlooked your post. You have motivated me.
We have a lot in common too. I was dx in 1998 and now have SPMS. Was never offered a DMT. I'm curious as to what happened last year. Did you go on a DMT at that time? My MS is progressing too. I have an appt. with a MS specialist next week. I wonder if he'll offer me any sort of medication. Good luck to all of us! MRC
Hi Ikeeptrying . I was on several DMTs in the 1990s (betaseron, avonex, Rebif) but they all made me feel much worse than my RRMS. So I went off everything until 2012. My neuro at UNM at that time insisted I be on something - just pick one, she said! So I tried Aubagio, which made me feel so bad it ruined several months of my life, I felt. Then Rebif again, which again didn’t agree with me. Finally Copaxone, which I was doing fine with until after an injection several weeks in, I broke out in hives, so had to discontinue. So I haven’t been on anything for the past four years or so. And that’s around the time I started progressing - slight limp after activity at first, now using a rollator for any kind of distance. My limp is pretty bad now and I have tons of pain in my legs, feet, hips and back.
My balance is really bad and I’ve fallen a LOT! Now my left leg is getting weaker and weaker, so I’m seeking help before it gets worse, hopefully! I can still drive, and I do not want to give that up!
I was never offered any medication. Luckily I'm still mobile though, like you, my balance is rotten. I fell and broke my hip and still have pain from that and my vision is iffy. I don't know if this new neuro will offer me any Rxs. MS is such a mystery. Thank you for your reply.
I lost more feeling left hand, tripping, found out I have left foot drop they also found lesions in my brain that were new when I was dx in 1991 large lesions just on the cervical. Last year was totally crazy they started me with Copaxone a little late now but they figure better than nothing....but damn all those frigging years! Oh well don't look back they say... look to the future.... well the future is looking pretty scary.
Wishing You the Very Best please let me know how the Docs treat you.
I used to fall a lot because of foot drop, but my nuero prescribed an orthodic, and that prevents foot drop so I don't fall any more,except when my kitty runs under my feet and trips me, good tthing that she's so cute, or I might be tempted to kill her at times(not a child a feline).
My brace arrived only to cause extreme pain in my lower shin orthotics still messing with it needless to say my insurance covers crap because that's pretty much what I got.
Your lucky in love, you have a fur baby I'm envious take good care of the little tike and....
I diagnosed myself back in 07 using the internet. My husband said I was crazy but when I went to the dr. and had MRI's and spinal tap, guess what? I have PPMS. My "specialist" makes suggestions about treatments. Says Ocrevus is my best shot, Might help, might not, but, if you get PML (which is not likely, but possible) you WILL die. For me, I don't think I'll take it. Sorry for the negativity, having another bad sleepless night.
That's what is forum is here for. We understand. I have had a few of those bad sleepless nights lately. It's so easy to go negative when you are frustrated cuz you hit a brick wall at every turn. You know they do monitor you if you have the virus. There are a lot of people on Ocrevus with the virus. Hope you get some rest.
I tested positive for JC Virus about 3(?) years after starting Tysabri, my 3rd MS medication. Since then I’ve taken Copaxone, which I later discontinued for Ocrevus. I know a few other JC+ patients who have done well after starting CD20 antibodies like Rituxan and Ocrevus. Discuss it with your new neurologist!
I was diagnosed in 2005 also. I started with a neurologist that was there at the time of my MRI. I had another MRI in 2007. I was the the dx was correct but a good friend of mine insisted I should go for a 2nd opinion. So I did and the appt took 3 months to get with the top specialist around at the University. I waited in the waiting room for a LONG time. It was crowded. When I got to the room, I waited another maybe two hours. After over an hour a resident came into and maybe apologized for the long wait and if I remember correctly I waited another 45min to an hour. The exam took maybe 10 minutes or less. He looked at my MRI CD and asked me to walk up and down, and then he said Yep you have MS. That was it and I didn't want to go back. So I stayed with my neurologist that I started with til this year. He was a little "black and white" for me. When I mentioned some bladder problems his answer was, see your gyn.. not his expertise.I understand that but then I knew he wasn't a specialist for sure. He was though ok and he felt since the medication was working he felt no reason to have another MRI. I kind of agreed but with all the reading I do, I wasn't sure it was the best decision. This year he decided to get one after 11 years. Because there were no recent MRI's is was difficult to determine if any changes had occurred and all my lesions were inactive as they had been in 2005 and 2007 and walking was not problem. Nevertheless he thought some of the lesions might be different so he sent me to an MS specialist at the same University as before but not the same doctor (who is still the local guru there) and the MS clinic had changed a lot since my visit years ago. It was not a crowded site site like that last time and I did not wait long to be seen. My appointment was not rushed and she involve me in a study. I knew right away I would continue with her.
Susan, Timothy Vollmer, now of of the Rocky Mountain MS Clinic, was my neurologist for a few years. He came to Phoenix to set up an MS Clinic at Barrows. Not only is he a great neurologist, he is a researcher and MS speaker. I truly believe the trip is well worth your while.
Thanks! Yes, I know of Dr. Vollmer. He was a colleague of my neuro back in Connecticut at Yale School of Medicine. My appointment is with Dr. Teri Schreiner, but it looks like all the docs at Rocky Mountain are involved in clinical trials and research, so I think I’ll be in good hands.
Bravo Hidden ! 10 years when you are progressing might as well be a lifetime so it’s great that you are being proactive!
The Rocky Mtn MS Center is well known as a great place for MS treatment as they are on the leading edge of MS research. And, as you know, Dr. Vollmer is phenomenal. I wish there were more MS specialists like him. I read their publication because it always has good info. Let us know how your appt goes!
Thanks for the confidence boost! I’ll let you know how it goes...
Taosgirl, i too live in good ol'colorady! & i have had a Referral for a Dr. John Carboy in Aurora, @ the M.S. center in Denver! But don't know bout Schreiner, glad it is a good Denver Neuro. Blessings for your appntmt Sept.!! 💗❤💚💙💛 & Prayers👏💪 u'll be okay. I really miss Riding horses too, very much!!🐎🐎🐎 Bound to get back soon! Much Love!--Jazmine🌹💜Rose
Yah, the Nuro should have known about a new drug coming out in 2019 or 2020. It's for SPMS, but I'm on Ocrevus until we find out more about it. It's Called Siponimod..I may have spelled that wrong. Sorry. I am also SP. Happy you found a new place to go. Hopefully you'll get some good news!
I read that there is a similar drug called Rituxin (tinyurl.com/ycr3kbfj) supposed to be less expensive. However it is a drug prescribed for other diseases although effective in MS but your doctor may not be able to subscribe it. Anthother article says "Rituximab, sold by Roche as Rituxan to treat non-Hodgkin's lymphoma, chronic lymphocytic leukemia, and rheumatoid arthritis, outperformed newer MS drugs from Biogen and Novartis. ... Drugs to treat MS have proliferated as more effective treatments have been approved, with some half dozen options now available.Jan 8, 2018". Something to look into anyway.
Yes, itasara , it’s amazing how many options are out there! That’s why I’m hoping a specialist at the clinic can help me, and why I just can’t take no for an answer from my current neuro! Thanks for the info.
I’m so sorry your neurologist wasn’t a good listener. From what I understand, as soon as the doc says it’s spms, insurance won’t cover it because it’s apparently not meant for that- HOWEVER, an MS specialist should just say you have rrms and push it through (that’s what mine did- even though all of the signs are there that I have spms, it’s a gray zone so as far as all are concerned, I have rrms.) I would definitely ask if they are willing to work with you on this and get it pushed through. Here’s a great article on the national ms society page nationalmssociety.org/Treat...
I’m glad you found a new doctor, one who specializes in MS. I recently went to a consultation at Johns Hopkins. I typed up a one pg summary with bulleted points that gave an overview of my disease: symptoms, relapses, and medications. It included the year I was diagnosed and my original symptoms, which yrs I was on which medications, which years I had relapses. He said he found that to be helpful (since there are pages of notes and records from my local neurologist office). Just an idea for how to prepare for the appointment. Good luck!
Great idea! I will definitely do this! I’ve been on so many different meds and DMTs over the years, it’s hard to remember unless I write it all down. All that information will also be fresher in my mind, like preparing for a test! Thanks, Elizt3 !
Start writing down a list of your questions and concerns so that you don't forget to talk them over with the Neurologist. Also bring with you everything you have done so far so the neurologist can look it over.
Susan, I have PPMS, and my neurologist in Golden Valley, MN put me on Ocrevus, as the Gilenya was no longer working. So far, the Ocrevus seems to be working, but I will not know for certain until my next appointment at my Neurologist's office with his nurse, Jerry, which is in October.
Wow! Something I never realized....it's been many, many years we've been planning to move back out west. Used to live and work in El Paso/Mexico, moved to Chicagoland, a half dozen years later was diagnosed with RRMS. Finding MS specialists was easy. Had 2 from different practices, and know of more. 1 spoke internationally on MS, the other ran the MS program at a major teaching hospital till moving on....never thought of this being a problem. As the reason for moving back to Chicagoland (family) have all move or passed, were ready to get out of Chi-town. After many years with dreams set on Colorado, the last decade has been on Arizona. Last trip a couple back was focused on moving, thinking Phoenix/Scottsdale burbs. NEVER thought finding a new specialist would be a problem! Don't rely much on my neuro (s) anymore, as I'm in that over it, left with my long collection of MS battle wounds, but even beginning to shake a few of those via nutrition, nutrition, nutrition. Did loose my vision losses from 7x optic neurititis that I had for decades...
Guess I need to look into M.S. specialists now. Hoping to sell the house from the past 40, and head West, not so young man any more.
Again, who thought!
They do have lots of good healthy fruits and veggies out there, Don't they?
Did not really look/find produce markets out there... They exist? Don't tell me they Don't. My daughter lives in Ft. Meyers, and there Wal-Mart is their best.
My son's in Austin & Dallas, but he's not focused on nutrition. Found an artichoke and had to ask how to cook it...
TELL ME, MS Specialists AND Fruit / Veggie Markets exist there. I know what I'll be doing next week!
Totally need to research that one. I live in east texas and u wud think fresh produce wudnt be an issue - but it so is! The farmers market here is a tiny parking lot with maybe 4 people selling stuff that looks like they got it at walmart from back of a pickup truck!
I should have paid more attention years ago when I met the owner of the chain of fruit/veggie markets I shop at the most....there are many different ones around Chicagoland, and they are all growing! Always remember a few growing up as a kid. Never thought much of fruits/veggies growing up. Now, it's keeping me alive, healthy as can be with too many years with ms. Asked the owner why they have not expanded beyond Chicagoland....told me, the rest of the country's not ready. Over the years, I am starting to realize it's true?Chicagoland is the capitol of the country wrt fruit/veggie markets, farmer's markets... everything you need to be healthy, BUT also easy to die from all the lead flying around thanks to $$$$ and drugs. So all I need is one, good, cheap produce market out west! All my food dollars would go to them!
Wahls Protocol is based on eating healthy. She says a lot of the people she helps grow their own veggies and stuff. I cant keep a house plant alive so not sure i can do that! But it may be worth a try some day 😁💜
Okay, food for thought, or is it thought about food? When I lived in El Paso, one of the houses we had, I went overboard with growing. Many raised beds,.....everything grew like weeds. Especially the weeds. Though now that I've perfected drip irrigation... Still, can't grow everything a good cook needs AND cook while managing my spoons. I've picked up more spoons on healthy eating and walking my cane everyday with the leash counting steps around my ankle, but the spoons are still limited.
I just took my wife and my cane for a 7.5 mile walk this afternoon thru the forest preserves. It was a feel like temperature of 101 degrees according to the weather. It could have been 115 degrees in Arizona, but this it the midwest. The actual temperature was 92?....The humidity....high....my clothes weighed more than I at the end of the walk. Out west, all that sweat cools you like it should. All day at 115 in the southwest.....great day. Here, in this humidity, I barely made it back, and then melted in the car till a half hour later when the air conditioning revived me enough to be coherent again. Glad I wasn't driving. The the multi-million mile driver (literally) couldn't have done it after that. Humidity kills!
Spoons........I had none after that, borrowed from the future. Yet, that 7.5 mile was not a long walk. 10's are not uncommon for me these days..........from the guy who never walked anywhere! Never was athletic.... Unless you've given up... Eat Healthy and Exercise. Even if it takes a cane or walker! He double toothpicks, if you need a wheel chair.......do it! You build more spoons by eating healthy, and exercising! Even if you have to walk like a drunk.......do it!
I do 2 miles a day on the treadmill. I dont leave the house in the heat. I literally can not handle summer temps here. I went and got my hair done and went shopping one day in june and i have no idea or memory of anything that happened from the time i got home til next day. Apparently my man dropped me off, went got dinner and we ate together and i dont remember any of it!! The heat and humidity melts my brain!
When I left Connecticut to escape the humidity, it didn’t occur to me that I was also leaving behind some of the best specialists in the country! 12 years ago with RRMS, I felt pretty good and didn’t have any big MS issues except the occasional exacerbation, and even those weren’t that bad. But now that it’s progressed and I really need a good specialist, it’s impossible to find one in New Mexico!
There is a conversation about it in the medical community and the papers - there is a desperate need for those with MS, Parkinson’s, stroke survivors, etc. for good care. And if you do find a doctor, it takes months to get an appointment! So beware of moving to New Mexico...
As far as fruits and veggies, we do have some farmers markets on Saturdays with locally grown delicious produce, but I’m afraid Walmart is the place to go!
It is really sad that specialists are hard to find in some parts of the country. I just read that there will be a shortage of doctors in general and a shortage of medical students in the future. More PAs are seeing patients. Some are very good but it is not the same as seeing an MD.
Yes, it’s true - my current primary care provider is a PA, and she’s wonderful, but I need an MD sometimes! Actually, the first MS “specialist” that I saw for a year at UNM Neurology was a PA!! She took it upon herself to study Multiple Sclerosis specifically, and was the favored person for MS patients to see. She had 25 years experience with MS and tons of patients. But we all lost her when she retired, and she is very much missed!
Walmart., really? I'm used to loading a shopping cart FULL for $40 full of great fruits and veggies for the week. Walmart, I get a few sub-standard items in a couple bags for $$$$$. That's not affordable. And forget finding............... all the wonderful stuff that exists. I use Walmart for Smart Balance, my cleaning supplies, my daughter's cat food, and occasionally a dry shelf item, oh yeah, nite crawlers for fishing, but is there anything I would eat from there? Their fruit and veggies are sub par and expensive. Sorry, but can't eat healthy on what disability pays, even on an ex-multi-company executive's compensation. There's no better place than a real produce mart. I was considering New Mexico because my daughter who is a teacher, would consider following us, but AZ has such a problem paying teachers....in the news now......New Mexico, the barren state, which I always loved.... My favorite fishing was Elephant Butte. My favorite source of cactus, Tucson...., my favorite brunch in Old Mesia....but there wasn't much else. I got my car stuck on a cattle guard 50 miles? from El Paso on the Mexican border, which I got off of myself, exploring the state to the max. Even my ???? super smart relative who worked for the gov't in Albuquerque couldn't take it anymore and moved from there. I need a great produce market to eat without deteriorating back into the H-E-double toothpicks MS sent me into, and the only way out was Nutrition. That is now the #1 priority. And now on a strict limited budget..... The price I paid for treating my employees like I'd want to be treated........they always made more that I as the CEO? It was good. We all had......the best healthcare the COMPANY could buy, no contributions, little to no co-pay..........honest treatment regarding everything........we were not related, but we were all family. When someone was down for whatever reason, we were there for them. They all worked giving their all. No regrets. The way it should be. If our country was like that everywhere......we'd be the greatest on earth. No rich, No poor.
everyone living like we should. Everyone giving it their all. I could have been rich! But I found Nutrition to fix my M.S.! I'm blessed. Just give me a great produce store in the Southwest, and I'll be in heaven!
My advice on starting with a new specialist in a new city/state is have all ur medical records transferred over now. Get all the paperwork out of the way first while u can so ur first visit can be about you and not what needs to be signed filled out and redone
Hopefully u have copies of ur MRI’s and the reports already u can take with you.
You go girl!! No one knows your body like you. I fired my first one two and found a MS Clinic as well . My nurse helped me with that. You have to do what you knows best for you. I hope all goes better in the future. Come on September 11th.
Never take no for an answer. You have to be your own ambassador when it comes to this disease. If you feel like you’re not getting what you need, move on. I’m glad you made the choice to find a different doctor. I went through 5 neurologists before finding the one I have now. I got so tired of hearing that they didn’t know what was wrong and couldn’t help me. Keep us informed of your progress.
Susan, I think you did the right thing. My neuro (MS specialist) is 5 hours away, but in my mind, it's well worth the drive. (OK, hubby drives and I sit in the back seat and crochet). I get discouraged sometimes that I have to have this stupid disease that NO ONE (other than MS specialists) know anything about. Hang in there, girl! Hopefully this doc in Denver can get you started on the right path quickly.
You have brought up the subject of finding a good neuro amidst this sea of medical professionals. I have not had the problem of finding neuros in my area, New England. Finding a good doctor that you feel comfortable with, well, that is another story. I have had a few experiences with dealing with doctors that I, to me, personally found 'lacking', and I did have the luxury of finding many others who were not. It is a very personal choice. To not have a medical professional to see nearby (within a 1/2 hour drive), that is not good. It would add to my stress. I am blessed that I don't go too far for my care.
It is an option for you to move closer to an area that provides lots of doctor choices for you? Like New England?
I am hoping for a good appointment for you on Sept 11. Let us know how it went. And I will pray that your search for good medical care is successful!
Hey carolek572 - I grew up in Connecticut but moved to New Mexico 12 years ago! I had an excellent specialist in Derby, Joseph Guarnaccia. But the humidity was really affecting me, so he and I thought a move to the southwest would be a good option as I have family in Santa Fe. And it has been wonderful except for the lack of doctors. Every year I go back to New England to visit my father in Portland, Maine, and when the humidity hits me, I’m glad I get to come “home” to New Mexico! I do miss those New England beaches, though....
I am hoping for the best for your upcoming appointment. Perhaps touch base with your CT doctor for suggestions on finding another med professional only IF this one doesn’t work out. But I have faith.
I think you have made the right call! I'm very new to this group (DX in may of this year after 3 years of trying to figure out why I was SO tired). My Neurologist initially diagnosed me with PPMS, just so that I could get Ocrevus. I've found out since, that I will need at least 1 year of treatment to ascertain as to what degree I actually have, but am thankful that at least they are trying something.
I just saw the neurologist last week and I said I felt 70% better since having the Ocrevus and she said the Ocrevus wouldn't have helped me feel better it just boosts your immune system.
I am looking for a new Neurologist as well. Best of luck to you!
Thanks for your post. My husband and I moved from Houston to Santa Fe last year. I knew my health-care options would be limited here. I am pretty stable but would feel better with a neurologist who specializes in MS. I may follow your lead and explore options in Colorado.
Welcome to Santa Fe, GildaS ! New Mexico is a wonderful place to live, but I’m afraid you will have to travel to Colorado if you want an MS specialist, at least for now. Good luck to both of us!
Susan in Taos
Thanks starlight5 . I’m bringing the actual MRI disks to my appointment. Wow - my journey is only half the distance you travel! Thanks for the tips.
Good for you Hidden for firing your neuro! We have to be our advocate and some docs/neuros think they know all or they just don't care. Good luck on your appt in Sept. Please keep us updated on how it goes!
Jessie
Thanks to all who replied and gave great advice!! I truly appreciate each one of you! I will continue to keep everyone posted on my progress.
You will find the Rocky mountain MS center to be extremely up to date on every MS drug. I have had MS now going on 33 years and have been on about every MS drug and MS therapy drugs currently on the market. I am actually going to a pilot office in Fort Collins and that neurologist also has MS. I was going to go to Minnesota to the Mayo until I found the clinic and I found they do more testing and actually are trying to come up with as many drugs as the Mayo. Living in Wyoming winter driving is always a pain but they are exceptional at working with you because of conditions. I was actually the 32nd person and first this side of the New Yo k area to gone on Ocrevus and for me it made things worse. I was sick the entire month of taking the first two infusions and when I was supposed to get my six month infusion my lymphocyte count was too low. For me the new MS therapy drugs all lowered my lymphocyte count so I spoke to my neurologist about going back onto Copaxone. He agreed but my problem now is convincing the advocates (they need to look at a dictionary on meaning of advocate) and they won't approve the real drug and want me to keep using generic. Because I have had so many different drugs put into my system since I found out I had MS I need 100 percent of the actual drug and not (per FDA information) 45% of the cocktail the generic manufacturer came up with. It may also be what is used as filler because the FDA doesn't monitor filler and a lot of filler is from other countries.
You are right in questioning your doctor because they are people with an education and you are in charge of your body and I have always researched the drugs but Ocrevus was one I couldn't get a lot of information about only because the FDA made them do different things to get approved. I had to send daily recordings of my temp, BP pulse food intake and of course release because I was basically the lab rat at that point. I called before sending in information after 4 months saying you had to pay for rats and their food so will you pay me for my information. They of course said no so I elected to stop sending information (sorry fellow MS sufferers) but it was costing me money to send information to them
Be strong and remember we only have one life to live so do your best
That is interesting about the fillers in the generic drugs. I knew FDA allowed for 45% less of the actual drug but didnt know they didnt monitor the filler. That is disturbing! Eek!
In December I ordered my Copaxone. When it arrived I put it in the fridge without looking until today did I was going to inject it, and I saw it was not my usual box; It was the generic Myelin. I was really upset because there was no communication this would happen neither from the pharmacy nor from my doctor. The pharmacy said it is the policy to give it out automatically generic versions unless the doctor says otherwise. My neurologist said, when I called him, it's only been out for month and What do I want to do. I said I wanted to stick with the same brand I as haven't had problems with it and I think what works is what I should stay with. I had been asking around like my pharmacist and online about the differences between the generic Myelin and the brand name and most said they were exactly same and others said they didn't have the permission to say anything at all. Pretty sure the medication same formula but not sure about the filler.Besides I kind of like working with shared solutions. My pharmacist said everything was the same but I was still dubious. I don't like changes. So my doctor changes the prescription and I return to my pharmacy the three month supply of the generic that was delivered and my pharmacy hand-delivered the brand name. This is the kind of nonsense we patients have to put up today with insurance companies deciding what treatment we can are should have, all based on money in my opinion. On some of MS sites I have rea no matter what will not dispense the brand-name. I find it very unfortunate as I think patient should have some choice in their doctors should have some say.
That really pisses me off! Sorry for the language, but I have many insurance and pharmacy complaints. When you don’t feel good and now you have yet another issue to deal with just to get your medication, it very maddening 🤬
Hey Dave your Neuro. In FtC, is Dr. Shaffer? My adoption mom referred me to him, & it's almost 60 miles to drive to him from here, in mnts. Hurts too much, I Praise YAH! I found an M.S. pecialist here in my homemntown... Blessings💗❤💚💙---Jazmine🌹💜Rose
Good for you that you found an MS specialist. I just changed to a specialist after 12 years with a general neurologist. He was good but not as thorough as a specialist would be. After one appt with the specialist I knew I would make the change and probably should have earlier. I am not having the same problems you are.so far, but your last neurologist should have considered Ocrevus for SPMS. I am not a doctor but from all my reading about MS, I know that is a drug used for SPMS. I don't live near Rocky Mountain MS Center but I have been on their mailing list for years, and if I lived anywhere in the vicinity I would go there.
I am proud of you for standing up for yourself. I don't post anymore, due to being cleared of my MS diagnosis.
I was diagnosed and treated(poorly at that) for 4 years. I felt I wasn't receiving the proper care, so I got a new set of doctors and found out that I didn't have MS and have now been under the care of a great neurologist and therapist to deal with my true issue.
What a testimony for advocating for yourself! I’m glad you don’t have MS Fee09 , and I’m also glad you found a great neuro and therapist to treat your issue!
Everyone here has given you really good advice. And I admire your fighting spirit for refusing to believe nothing else can be done for you! I wish you well and keep us posted. Big hugs 😀
Good luck and I am so sorry you have such a distance to travel for a doctor. I hope this one will take of all current needs and that you leave feeling I AM BEING TAKEN CARE OF FINALLY. I will keep praying, who goes with you and how old are you? I am 77 and have been dealing with PPMS for almost 30 years now. I did have the most wonderful husband but God needed him back 12 years ago. You keep that wonderful attitude you have and never stop fighting, do not let MS win so proud of you
Thanks for your prayers. I am 53 and have a wonderful, caring husband. But God is the one who really takes care of me. He gives me hope and my feisty attitude! We live on a small farm in northern New Mexico, so I will have to drive myself so he can take care of our many animals. I don’t mind, though. I’m very grateful that I can still drive, and I like being alone with my thoughts and the Lord! I’m glad you were blessed with a wonderful husband. PPMS for 30 years! Sounds like you’re a fighter, too! Thank you for your kind words.
Good for you Taosgirl! That took a lot of courage. I didn’t read all of the responses so I may be repeating someone else. I would strongly suggest that you gather all the records available relating to your treatment thus far. That includes lab results and MRI reports. You might consider calling the new doctor’s office and ask if it would be helpful to send the records in advance of your appointment. I wish you all the very best and hope you will let us all know how you are doing after seeing the new doctor.
Yes, my records and lab results have been sent in advance and I am bringing the MRI disks myself as they requested. I got LOTS of advice from my family here! Thank you all so much, and I’ll post an update after the appointment.
It isn't easy to go to a new doctor, but these days we all need to find someone with whom we are comfortable and with whom we feel will give us good care and advise and really cares.
Good for you, always remember M.S. also stands for MADE STRONG. The Rockey Mountain Center has a GREAT reputation in the MS community. Stay strong and continue as your own advocate!
You are making the right decision because if you are not satisfied you always have to remember that it is your body. The one thing I learned when I switch switched neuros because my first one got stuck on the fact that I also have cerebral palsy and would sit there saying you cannot have both of those together... And I got tired of arguing with her that I could not be the only one in the world. The internet helpme me dispel that myth. It took me a while to get a doctor to understand that it is my body and they had to listen to me.
I have often joked we with MS have to go to medical school so we can teach doctors about the disease.
Yes, I do feel at times that I know more than the doctors! And if they dismiss me and can’t help, I just move on. It took me a little while to learn that, but I guess you get a little bolder with age!
Good for you! I would have fired him too. I am on my 3rd neurologist in 4 years of having MS and have finally found a winner. I love going to the MS clinic I go to and I have to drive over an hour to get there. I hope you love your new MS Clinic half as much. Good luck!
are you going to cu?1635 court floor 4Aurora co 720-848-2080 they got a whole floor of nothing but ms people all types and ages i have been there in 2013 the dr name was john r corboy i also saw dr gregory everson same place treats alot of people all around the rockys i am going to start ocrevus and i am 62 on 10-01-18 lots of good luck for you maybe you should check them out university of colorado hospital in aurora co or a doc in lakewood co scott london im on the western slope now (closer to grand junction co seeing dr brooke allen in basalt co near aspen if i had to do what you gotta do go to cu they do it all there and have high ranking for what thats worth it was a eye opener for me i got it made compared to some all ages and all stages of ms out there people from all walks and ages from all around check out horse back miracles .org 303-681-3115 been there once in july cant wait to get back more help for me with one visit than all the docs i ever saw or any meds
I'm sorry to hear about al the run around you've been going through. I can't really relate as I've been seeing top MS docs for 2 years now. It could be worse, on Dr. Phi Show, he once had a guest who said that she had been having a variety of seemingly unrelated symptoms for years. She'd go to her PCP who would order several tests. After a while, he told her that she had MS. He told her to "Go home and die because MS is incurable". She said that she refused to "Go home and die". Instead she went to a specialist who told her that her doctor didn't know what he was talking about. She said that she's been on Avonox for 15 ears and she's been fine. When I heard her story I realized that my PCP wasnn't THE wort doc out there, thee was at least 1 worse. You're doig the right thing going to a doctor who specializes in MS. My MS doc isn't the closest to home, but he knowswhat he's doing, so he's worth the drive.
Hidden sounds like you’ve made a very positive decision and that is what Warriors do! Be sure to take your records and any journals you might have to refer to when preparing for your appt. Keep in touch with us and let us know how the appt goes.
Hi Susan I have seen where many on here have the worse type of MS & several are on Ocrevus & if you want to try it & your Ins. co. agrees then the Dr. should let you try. I have heard of the Rocky Mountain MS center I wish it wasn't so far away. I am sending hugs & prayers to you Mary
I'm confident that it will work out better for you. Having a neurologist that specialize in MS is more hope than having a random neurologist. Good luck
I've been there... sounds like you made the best decision for you! I saw seven doctors in a 3 year period with my stack of MRI's - how draining for us! We're here for each other, journal your visits with the new doctor and maybe outline any current issues so your patient/doctor relationship gets off to a good start. I know they always require those intrusive health surveys; I have found that if a doctor can just get back to just "good listening" - just maybe we can receive maximum A+ healthcare.
Good for you! Be proud of yourself! It is hard to change doctors, I know because I myself did. Always remember we are our BEST advocates, as we know what our bodies feel and deal.
I am sending prayers and good vibes your way , stay strong! Make some notes and write down your thoughts as to not forget everything you want and need to discuss. I keep a journal so I can remember to talk to my neuro about good and bad, it has tremendously helped!
Hi Taosgirl Susan! If you still not satisfied please come to Las Vegas Nevada. My neurologist is at Cleveland Clinic Lou Ruvo Center for Brain Health where they tested ocrevus before released to the public. All you need need is a referral from your PCP and it doesn't matter what insurance you have. 7024836000 PST. Blessings Cynthia
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