Neuros and my adventures with them

[RoyceNewton]

neuros and my adventures with them.

I understand the frustration. Neuros do not listen, they just do not understand. The staff are the most (your description here) It is just so (again your turn).

Now just imagine what it is like for them. The neuro has to tell a beautiful scared young lady or man that "I am sorry "YOU" have ms, there are these medicines, they will not cure "YOU" but they might make "YOU" sicker slower, but I can not be sure that I am giving "YOU" the exact right medicine for "YOU" Did I mention the possible side effects." Now I am never making excuses for neuros, they get paid enough to get there own therapists. All I am saying is that it might be easier on "YOU" if "YOU" took them off their pedestal and cut them a little slack. Same is true for their staff. Come to think about it, it might be easier on "YOU" if this was done for most everybody.

We all have a very confusing and frustrating illness. I am not suggesting that "YOU" become a saint, just that "YOU take half a second before "YOU" bite somebodies head off, even if they really do deserve it. I never ever say this for them it is for "YOU and only YOU" "YOU are what is important, "YOU" travel this ms path and it is "YOU" that has to be comfortable traveling it.

Now back to neuros, I have had four in twenty years. My expectations are very low as I understand what they can and can not do for me. I have learned ms and my ms in particular. I learned and forgot all sorts of stuff about Disease Modifying Therapies (DMT) Attend ms lunches regularly, not just for free lunch and to socialize but to hear things again about this illness. It is true, the learning never stops. A new perspective is always good. I have never feared to change Neuros, as I keep very good records about my health, it is not hard to brief a new neuro as to what is going on.

"YOU" need to be taking a DMT the sooner the better. My suggestion, remembering I am NOT a doctor, is the stronger and safer the better. Start eating better, exercise some and most important your protective underwear. Watch your money as lots of people will try to take it. In all things protect yourself, there is no need to be rude and cruel. We have a very high divorce rate, not everyone can voluntarily cope with a lifetime of ms. We have to, they do not.

Stay strong, there is no need to be afraid. Actually, a little fear is okay, just do not let it break "YOU". Today in 2018, there are treatments and opportunities available to "YOU" Find them and learn them for yourself, go to your next neuro appointment knowing what "YOU" want and what might be available to "YOU". State what "YOU" want and get it, do not let yourself be pushed around by anybody. "YOU" may have a chronic illness but "YOU" have to be firm in your needs for nobody else will be with "YOU" always through this journey.

Royce

stand strong and ask for what "YOU" need for your life

[ktaylor8899]

I really do like this because my Neurologist is usually they dry sense of humor type but I saw the difference last time. When he told me that my MS is pretty advanced and I only have one medication option that he feels will work. I tried to get him to change me from rebif because of how sick it makes me. I could actually see the look on his face of like sadness and empathy when he was explaining things to me. I just turned 30 last month so he is very much on the “you’re so young we need to do it what’s best for your future” line of thinking. But it was the first time I could see that it is hard for him to have to be the bad news person.

[RoyceNewton in reply to ktaylor8899]

why can't you try something stronger? Tecfidera is my DMT of choice, maybe even Ocrevus,

[ktaylor8899 in reply to RoyceNewton]

He said those are all about the same as rebif & he didn’t want to switch around before giving this one a chance to work. He said Ocrevus May be an option if the side effects stay too harsh but my insurance will fight coverage on it. Insurance has denied all my Prescriptions. I’ve appealed and got my dr to write letters, but they would rather I try something more mild and have it not work than to just give me what the doctor is prescribing.

[RoyceNewton in reply to ktaylor8899]

did I reply, I thought I did

[RoyceNewton in reply to ktaylor8899]

Recfidera is a tablet, not a needle, that is different

[ktaylor8899 in reply to RoyceNewton]

I asked him if I can go on an oral medication instead and he said that none of the orals are strong enough. 🤷🏼‍♀️ I am waiting for a referral to another neuro for a second opinion on treatment options see if someone else has a different opinion.

[RoyceNewton in reply to ktaylor8899]

good move

[Peruzzot]

I tend to be a little too patient with doctors because they like cops get to see too little of the upside to the job. However i do have a tendancy to get snarky when i don't get straight answers. Once my primary doctors have gotten to know me a little better they know they can just give it to me straight and i won't freak out on them but if they try to beat around the bush so to speak something very snarky is likely to be said. Most of the nurses are happy to see me. One even gives me a hug everytime she sees me come in. They are like that with me because I don't walk in already biting people's heads off.

[RoyceNewton in reply to Peruzzot]

firm but polite is the best way and not expecting miracles

[Juliew19673 in reply to Peruzzot]

I'm glad I'm not alone in the Snarkey department.

[RoyceNewton in reply to Juliew19673]

never, they can be quite condescending

[Morllyn]

As usual, sound advice.

[RoyceNewton in reply to Morllyn]

thanks

[RoyceNewton]

thanks

[Smartcloud1981]

Very well said. I never thought of it this way. When I was in the hospital getting my diagnoses no one there seemed to far but the nurses and one med student on the neuro rotation. but this is my first neuro and he so far seems pretty good. Made me look into all the therapies so I could be informed and we talked about them together and I told him what I wanted and he fought for it for me. So far he’s been good. Gets back to me as soon as he can. It pains me to here all the stories that where their neurologist doesn’t listen to the patients.

[RoyceNewton]

sounds like you got a very good one

[Hidden]

Like you I've had 4 neuros since my diagnosis. I moved to a remote area a few years ago where there are neuros but none specializing in MS. I went to one only 1 time and decided I would travel to a city where they had an MS specialist. The difference I've found is the MS centers where all they see all day long is MS were much more aware of the disease and it's effects on the patient and their families and I never felt stressed by their staff. Maybe I've lucked up, but all 3 MS centers where I've been a patient have had a better staff from the front office to the back office, and the doctors have been kinder and gentler - with one exception - I had a doc who kept insisting I take a DMT I didn't want due to potential side effects that I was at higher risk for due to other medical issues I have and before I had to fire her for not respecting my decision, she moved to another city. The 1 regular neuro doc I went to where I live now asked about my current symptoms, and when I told him I couldn't run, he asked why. I found that startling coming from a neuro - he should have been telling ME why I can't run, not asking me why knowing that I have MS. His staff was also horrendous - rude, condescending, couldn't get them to call you back. It's getting harder to travel but as long as I'm able, I'll get to a major MS center if I can. Just my experience.

[RoyceNewton in reply to Hidden]

sounds very fair to me, I have not run more than two steps in years and years

[ktaylor8899 in reply to Hidden]

I am trying to get into a MS neuro now-closest ones are about 3-6 hours away