Comparing my neuros

[Daisycat]

1. First neuro
Positives- Um???? He loves dogs…. That’s all I have… and he thinks my dog is cute. But yeah I got nothing else.
Negatives – too many to list

2. Second neuro – Overall he is decent. I would see him over the other guy.
Positives


1. He is in town
2. He likes my choice of medicine
3. He believes people with this disease can have a normal life for many years before it progresses

4. Doesn’t think every time this thing acts up someone needs to go to the hospital – this is a HUGE plus. He thinks a lot of things can be treated by the symptom
5. If my next MRI is stable he thinks every 18-24 months is a good time frame for new MRIs


Negatives
1. He Is at a different clinic then every other Dr I see
2. He doesn’t think diet plays a role in this
3. Didn’t think having blood work done is necessary
4. Didn’t look at my records at all. I had my old neuro send him the records and I had to tell him everything it said – Big negative


Third neuro


Positives
1. Spend over 30 minutes answering my questions
2. Thinks lab work is very important since it can show changes that we don’t know about – this is something I agree with since I spend a lot of time explaining to clients why blood work is needed for their pet.
3. Knew about my history before I even went
4. Same hospital as all my old records (just different town) so my PCP can call in the MRI refer all for me so I can stay in town
5. Went over my MRI and showed me how some lesions have shrunk and one even has disappeared


Negatives
1. 90 minute drive – wouldn’t have been so bad if my GPS hadn’t given me a 30 minute tour of the ghetto… so the 90 minute drive became 2 hours.
2. Office staff was very rude – small thing but still an annoyance
3. Wants to use harder drugs – she thinks I should just be able to wear a mask at work and people knowing wouldn’t be a big deal. When I explained to her I would have to quit out of humiliation if anyone found out she was willing to let me stay on what I have been on since it’s worked for me. – Yes I know this is my hang up but I am not going to feel like people are watching my every move because of what is wrong with me.
4. Thinks anytime a new issue comes up an MRI is needed – doesn’t like outpatient treatment. I HATE hospitals and will not stay in one again so this could be a major issue if something does come up.

5. She seems to think most people with this disease will become what is my worst nightmare. (She DIDN'T say this... just the impression I got) I could just be assuming things.



Overall I really liked the one I saw yesterday. My only two hang ups are her MRI thing and the medicine thing. I like what I am on and it seems to be working so I see no reason to switch up to something else that is going to make me have to quit my job or cause me horrible side effects
So mostly wanted to type this out so I could see it to see what everyone else thinks…. But I do think the third one is going to be my choice as long as she is OK with me staying on my meds. I did agree we can discuss it after my next MRI , IF and only if there are things we need to worry about. Otherwise for now I like my meds.

Also I have way fewer lesions than the first MRI report made it sound like. The way the first MRI reports sounded I was pretty much going to be 100% paralyzed and blind and deaf any day. She went over everything and even said her people looked over the report and the way they described it was a massive exaggeration.

[Jules A]

3. Wants to use harder drugs – she thinks I should just be able to wear a mask at work and people knowing wouldn’t be a big deal.

4. Thinks anytime a new issue comes up an MRI is needed – doesn’t like outpatient treatment. I HATE hospitals and will not stay in one again so this could be a major issue if something does come up.

The change in medication is a tough call and one I struggle with although my MS specialist at a world renowned teaching hospital discourages me from considering a change from Copaxone at this point because I have been stable for so long.

The mask at work would be a deal breaker for me. I guess maybe short term for someone getting chemo? But really has she worn a mask for any length of time? Its awful, I'd need surgeon wages and everyone else in the office wearing one also.

I don't think repeating MRIs for MS symptoms is a recommended protocol? I'm a fan of prescribers following guidelines as much as possible. It makes me think they are up on current research and recommendations. In this instance, unless I'm wrong which is very possible, it also sounds frivolous and I'm weary of the exorbitant charges for unnecessary medical diagnostics that won't change the course of treatment anyway.

Also I have way fewer lesions than the first MRI report made it sound like. The way the first MRI reports sounded I was pretty much going to be 100% paralyzed and blind and deaf any day. She went over everything and even said her people looked over the report and the way they described it was a massive exaggeration.

If you understood her correctly and she actually said the interpreting radiologist was massively exaggerating that is a bit ridiculous. With multiple lesions they rarely count them specifically and I've read hundreds of MRIs, CTs and xray reports. Its not about subjective reports its about visual findings and differentials.

Based on what you describe here my choice would be Bachelor #2.

[pennstater]

Seems like the third is better from a personal care and thoroughness stand point. A 90 minute drive once or twice a year is worth it.

My guess is that since you are early in diagnosis, if new symptoms, she wants to check for new lesions/active inflammation, hence her MRI statement. If it appears a relapse, then she wants to be as proactive as possible, which may lead to a discussion on meds again. But hopefully, this will not be an issue for you.

On your #5, I think you may be assuming. Neither of my 2 neuros took this position. It could also be her concern on your medicine choice. But that may not be an issue either, as some people remain stable on it.

[Daisycat]

Jules

I saw her point of the first report being an exaggeration. Yeah you probably don’t count them but there is a big difference in using words like many and numerous vs there being less than 5. Numerous to me is a large amount.

We have a dr at out “sister” clinic who is in through chemo. If anyone there has so much as a cough they wear a mask, but the difference is everyone there knows everything.

And i already wear a mask for half my shif. I can’t do that for more time. It kills my asthma wearing that some days.


And I’m staying on copaxone for as long as it works for me. I’m satisfied with it so why change.


Pennatater

I’m ok driving 90 minutes as long as I decide to stay with her. If she doesn’t push the med issue and will work with me to make sure I don’t miss work it would go a long way in my satisfaction with her.

Not missing work is high on my list since people finding out or me missing work and looking unreliable means I’d have to quit...


ill figure it out. I have 2 more months before I run out of med refills from the first one.

[sarabeach123]

Who told you that you have to wear a mask if you start a different drug? I did some research and I can't seem to find any recommendations online (I was looking up tysabri specifically). I am not a vet, but I work with children and someone always is coughing into the air, or wiping their noses on their sleeves or their hands. I am on tysabri and I very very rarely get sick (in fact I haven't had a cold in over 2 years). Of course, I take care of my immune system and lead a healthy life which I am sure is helping the situation.

I realize that your situation is not the same as mine, but my neuro didn't seem to have any concerns about what my job was before recommending tysabri. Once again, I'm not necessarily advocating for tysabri for you - that would be a conversation with your neuro. But I am very interested in hearing about where you heard that you would have to wear a mask. Is there anyone on the board who works in a hospital, for example, who would have gotten similar advice?

[Daisycat]

Sarabeach

The third Neuro said it. She didn’t say I had to but when I said I was worried about zoonotic diseases and getting dog/cat scratches that cause infections she basically said I could wear a mask and arm protection.

There is a vet at our “sister” clinic who has to wear a mask and so does anyone else there who so much as coughs. She’s going through chemo so I know it’s very different, but it still draws attention to her she didn’t want.

(She wanted this to stay quiet as long as possible- not sure how it got out. It’s not my business. I knew about her situation since we still keep in touch, but she wasn’t exactly sober when she told me so I haven’t brought it up. (Was the night she found out her cancer was back. She’s not drinking anymore)

I’m also really worried about some of the other side effects of newer meds and hospital stays/needing off work. I’m determined to try to not let this thing effect my life more than it already has.

[Jules A]

I’m determined to try to not let this thing effect my life more than it already has.

Me too!

[Daisycat]

Me too!

I just wish wish I could get over my ocd obsession with trying to “cure” this with diet, excersise, random dr google ideas (yes I know it’s bad to do that)

but my mri had no new lesions and some shrunk or disappeared... so that’s probably giving me false hope.

Only thing dr google suggests that I’m not doing Is learn a new skill or learn more about something you are interested in...

that reminds me to much of my tech speciality that I gave up on and that still kind of upsets me, but honestly at this point I think the stress it would cause me would be bad.

My study sheet I made online was about 80 pages....

[Jules A]

Some of the horror will subside as time goes on and you hopefully have more healthy years under your belt.

I'm not sure lesions actually disappear and think more likely they just aren't always visible with subsequent MRIs but that may not be accurate. I guess because I also started with "multiple" I haven't ever had the luxury of counting just how few I have. Meh it is what it is.

Have you ever thought about teaching? It might be something you could do very part time to see if you like it. Should the time ever come where you aren't physically able to be a clinician you could teach vet tech students? Working as adjunct faculty usually pays ok and as tenured full time faculty it might not pay as much but the benefits are usually amazing. I like having options, even before MS I always had a plan B.

[Daisycat]

I’ve never really thought about teaching because public speaking is one of my greatest fears. I would cry in the bathroom at school before any thing I had to do involving public speaking.

I even wrote a 10 page paper one time to get out of a 3 minute speech.

Maybe i I could do a skill lab type thing, but the anxiety I would get from public speaking every day would probably kill me faster than this.

i even took a zero one time on a speech because I had a 105 in the class and I hate public speaking that much.

My plan b could be working with a pet insurance company or lab. Talking one on one I’m fine. Put me in a room with 5 or more people and I can barely breathe and get light headed.

If iI didn’t fear public speaking almost as I fear this disease that would be a good idea though.

And i might be kidding myself, but I have to believe that some of my lesions got smaller and/or disappeared. It’s really the only was I get through the day sometimes.

I’m pretty sure I’m going to be stuck in a cycle of depression (sleeping 14 hours a day), anxiety (taking the meds I’m trying to quit), and bargaining (work out excessively, follow an extremely strict diet, and take 2937 different supplements that are supposed to help ) for all time.

I also have the anger thrown in there when people complain about stupid petty crap that really doesn’t matter at the end of the day...

but acceptance is something I don’t see happening but I’m ok with that.

Ive actually had a few moments of happiness the past few days (not long but it’s better than crying myself to sleep every night)

so I might have false hope but it’s better than what my other option was going to be

[Daisycat]

Also it was the lesion/ lesions? that caused my double vision that they said is no longer visible. I am not sure if the fact that it was active and now its not has just changed how it shows up , but it wasn't like she said you had 30 lesions befor and now you have 5.

It was more that the one/ones that caused my initial symptom is gone and there were a few others that were smaller. I know the smaller thing though could just be interpretation from one person to the next , but who knows. I know she said it looked like healthy normal brain tissue where my old lesion was.

[Myoak]

Hello Daisycat,

Daisycat, may I express my personal opinion about two of your neurologists as you described them?
Perhaps, what the third Neurologist is aware of and attempting to communicate is… what we have is Copaxone which reduces relapses by 30% and has no effect on slowing disease progression versus Tysabri which, according the recent 10-year German study halted progression in 62.5%. 37.7% REDUCED their EDSS score; 37.7% GOT BETTER. How many get better over 10 years on Copaxone? Zero that we know of.
What the second neurologist communicated, I believe is.. I’m a lazy doctor who won’t have to monitor you on your drug of choice, Copaxone. Long-term, I know it is not nearly as effective as newer meds and you will suffer progression in disease but that is your choice. Copaxone barely works against MS but at least the minimal side effects mean symptom management will require little thought or effort on my part. You will be an easy patient if MS progresses slowly, as often happens. By the time you are using a walker on Copaxone it will be too late for a highly effect med to make a difference but that is 10 years or more down the road so why think about it now?

Treatment decisions are notoriously difficult in MS. IMHO, I would rather my doctor be capable, interested, engaged, willing to tell me the truth, willing to review MRIs with me, and committed enough to my health to clue me in on what he/she believes is best. One unafraid to describe and lay out the condition of my health but one willing to abide by my choice of treatment.

Compare the second neuro to the third and the difference is shocking.
The second neuro is a disinterested dunce, IMO. Seriously, would you honestly be comfortable taking your dog or a beloved pet to a doctor of that nature? JMHO.

A far as a highly effective DMT goes, if you ask the people here who have been on Tysabri the longest… Linda in Colorado, ru4cats, and Pennstater what they regret most about being on Tysabri, I believe they would all say the same thing… they would regret not getting on it sooner because if they did, they probably would have less disability, perhaps none.

Getting on a highly effective DMT is advantageous to your most healthy life... that is what your third neuro was trying to communicate, Daisycat.

But even minus going on a highly effective DMT, she/he is still willing to work with you and in your best interests. Absolutely, the third neuro is correct in close monitoring so you will have a heads-up ASAP in case the present treatment fails. The best doctor of those 3 seems clear as a bell, to me.

As far as hospitalizations, there would be no difference in criteria for admission between the two neuros, IMO. Flare-ups are often treated with IV solumedrol and that can be done at home by qualified IV services. In fact, recent research has proven oral steroids are just as effective as IV in treating MS flares. Of course, on something like Tysabri you would have fewer relapses (about 60% have none), anyway. With Copaxone relapses happen much more often. Did your second neuro explain that clearly?

Bless your heart, I wish you the best! Treatment decisions in MS take the wisdom of Solomon; they are seldom easy. I sincerely wish you the best health.

[Jules A]

I’ve never really thought about teaching because public speaking is one of my greatest fears. I would cry in the bathroom at school before any thing I had to do involving public speaking.

So it sounds like your anxiety and inflexibility are long tern traits? Probably both a help and a hindrance depending on the situation.

Teaching especially a small vet tech cohort is very casual more about hanging out and sharing your knowledge regarding a topic you are all passionate about. Overseeing clinical rotations would also be an excellent segway to see your tolerance. I bet you'd get so caught up in sharing your knowledge that it would be very satisfying.

And i might be kidding myself, but I have to believe that some of my lesions got smaller and/or disappeared. It’s really the only was I get through the day sometimes.
I’m pretty sure I’m going to be stuck in a cycle of depression (sleeping 14 hours a day), anxiety (taking the meds I’m trying to quit), and bargaining (work out excessively, follow an extremely strict diet, and take 2937 different supplements that are supposed to help ) for all time.

Yeah if that's what you believe and anticipate I'm sure it will come to fruition which is unfortunate because I think you are bright enough and certainly stubborn enough to work toward flexibility and acceptance.

I also have the anger thrown in there when people complain about stupid petty crap that really doesn’t matter at the end of the day...

Yup and for me I this expands past MS to anyone caught up in self pity over their first world problems. With regard to MS I try to be thankful at this point because I would think those with disability from MS probably, rightfully so, don't appreciate our whining either. There but for the grace of God...

Ive actually had a few moments of happiness the past few days (not long but it’s better than crying myself to sleep every night) so I might have false hope but it’s better than what my other option was going to be

Uhhhhyeah definitely better and I can't say what is truth and what isn't but would challenge you to consider finding a balance between clinging to whatever skewed crumb you might read on the www and move toward acceptance and appreciating the many positives that actually are your reality.

[Jules A]

How many get better over 10 years on Copaxone? Zero that we know of.
What the second neurologist communicated, I believe is.. I’m a lazy doctor who won’t have to monitor you on your drug of choice, Copaxone. Long-term, I know it is not nearly as effective as newer meds and you will suffer progression in disease but that is your choice.

While I appreciate you adding this is your opinion my opinion is your statements are salacious and misleading. You can not accurately predict that if someone stays on Copaxone they will suffer progression nor can you say someone would not suffer progression if they changed to Tysabri. Please also don't discount the small but significant risks of death from PML, issues with IV infusion and immunosuppression. The indications, risks, benefits and alternatives vary for individuals please be respectful of that especially if as I understand you do not have MS.

A far as a highly effective DMT goes, if you ask the people here who have been on Tysabri the longest… Linda in Colorado, ru4cats, and Pennstater what they regret most about being on Tysabri, I believe they would all say the same thing… they would regret not getting on it sooner because if they did, they probably would have less disability, perhaps none.

Even your one favored study indicates there were patients who had progression. It is an optimistic stretch to say if they had started Tysabri sooner they "probably would have less disability, perhaps none". I appreciate when they post for themselves. Unfortunately I suspect your wife has had a rough go of it and hope that at some point if she is able she will join our group and share her unique experiences and opinions.

[Daisycat]

Myoak


I feel like Tysabri is for people who don’t need to worry about being immune compromised or who aren’t worried if they need extra time off work because they get sick from the medicine. I told her I would be for discussing a different medicine at some point, but I am just not comfortable with something that can increase my chances of people at work finding out.



If people at work find out it does not matter what drug I am on because that is the day I will have to look into disability or transferring to another city where no one will know about it. By the time I am using a walker on anything it doesn’t matter because I will be headed to Switzerland.
I am all for discussing a change to a different medicine at some point if I fell it is needed, but everything in my gut is telling me Tysarbi is not a good choice for me. My anxiety is already threw the roof because of this disease and changing to a different medicine that I do not feel comfortable with after remind everything about it just doesn’t sound like a smart choice.


Jules


It was mostly only public speaking that used to give me anxiety. I cannot describe how much I hate it, and unless someone else has this same fear they will never understand how truly bad it can be.


And as for acceptance for me right now I just can’t do that. It would feel like I was accepting how I will end up one day , accepting that I am not going to get to do everything I wanted in life and that already hurts enough just thinking about it. Acceptance would probably drive me back to my extreme benzo problem. I am happy with my only taking one to help me sleep when I work the next day.



And again as for my drug I am on I am more than willing to discuss a different one , but so far my medicine is working for me. I can’t go on something that can cause a fatal brain infection , liver failure , immune suppression , make me miss work , not covered by insurance ( I forget what drug but one of the drugs is not covered at all by my insurance) I was using their tool to look up different meds and there was one that had 0% of payment from the insurance.
I think copay assistance programs require people to have at least some of it paid for by insurance.