Do You All Question your Neuro's advice?
 

I was in contact with an acquaintance who has had MS for 14 years and has been on "an alternative therapy". She seems great.
I've agreed to go on to a clinical trial in June. I have some worries about it. Especially when she said she was on alternative therapy...
do all of you get confused by what your neuro recommends?
I feel as if I'm in a sea of molasses...trying to figure out the best course for me...

If it was anybody but Dr. Wynn I might. I was on Rebif for about five months and had a bad reaction. I doubted my treatment then and he put me on Copaxone.

Of course we have doubts, since this disease can be so variable. But Dr Wynn is one of the top in the country in his field. I know I'm in good hands with him.

If you change your mind about the trial, let him know though. You aren't obligated to do that at all.

Alternative treatments have no known records for success though, other than the opinions of those who have taken them and that hasn't been scientifically tested, it's just word of mouth.

:hug: :hug: :hug:

There are good neuros and there are not-so-good neuros, and a few are really bad apples.

Have you asked your neuro about how many MS patients he has? Sometimes that can be an indication of how much experience he's had with MS.

There are neuros around who don't know much at all about MS.

This doctor is your employee, and if you don't agree with the recommendations or think you haven't been treated fairly, please don't hesitate to find a replacement.

You're the one in charge. The doctor can't force you to do anything you don't want to do.

I'd have doubts about being in a clinical trial too, I think.

Even a blind squirrel finds a nut sometimes. A neuro may prescribe the right thing for you but it's a hit, experience may not count. As a PPMSer, I've had some very experienced and highly regarded MS specialist neuros who can do nothing for me, so I look for listeners and ones I like. And who listen and treat symptoms.

Everyone with the disease is different.

The final decision is yours. Your neuro and doctors are there to guide you with their recommendations, but ultimately you're in control.

Some people can't make this decision and go with what the experts say. Some agree with the experts. Others decide while they value the experts opinions, they don't agree and wish to try alternatives.

I have a feeling you'll know what's best for you, and you may decide to go forward with doctors or choose your own path.

Good luck, not easy choices to make. :hug:

We always talked about stuff going on, which is probably why they had always scheduled my appointments near the end of the day so he had more time to talk with me. :) With the med thing, I always look up drug interactions, effects, etc. before I take anything. My experience with medications are hit and miss most times, so I always check for the rare and strange effects before I take anything. I'm always willing to see if it will make stuff better, but if it makes me worse - I always let him know.

Given my track record, was surprised at the reaction I had to the refusal of Ty - but crossing fingers the new guy will look at LDN as a possibility.

As to the alternative stuff, that's a hit and miss thing too. Good diet and exercise is always important. Plenty of water. I've taken some supplements and had some weird effects to those too. Even nature seems out to get me, lol! But that's mainly due to the IBS I have.

My mom did try for a long time a mix of vinegar and real honey every morning. I think it was equal parts in a shot glass. She swore by it to help with digestion, but I could never get myself to try it.

My neuro is not a ms specialist so I definitely questions his advice at times. He has also referred me to a ms clinic in St. Louis a few times when he thought it would be a good idea to get another opinion. I think he is now at a point where he does not want to prescribe anything new for me because of all of my reactions;). Maybe he will change his mind once again after my next MRI.:rolleyes: I am going to push him on ampyra at my next appointment since he would not even consider it when I saw him in January. I have also asked him about LDN a few times, but he keeps ignoring the topic.

Debbie, I am not sure about the trial. I think if I lived nearer a clinic that was offering one that a specialist recommend, I would seriously consider it. I did check out the one that you mentioned, and I most likely would not be eligible. Do you meet the criteria? Peoria, Il is another listed site which is about 2 1/2 hours from here.

Jim's neuro acknowledges that ms is different for everyone so yes we do question her advice and she listens and adjusts as necessary. :D

I question any Neuro, so called MS specialist or not, who insists on his MS patients taking a DMD, with abandon. They have no idea if the particular DMD will help or harm your body. :rolleyes:

How dare they get their god-like panties in a wad, if you refuse a treatment of unknown benefit or harm! :mad:

Me thinks they doth protest too much. :confused:

My neuro is not an MS specialist. If I had a stroke or something, I would probably feel confident with him. He's the only game in town, but do I trust his advice? Not especially. He told me to use the autoject to avoid the IPIR from Copaxone, which is bogus. And he told me that I "didn't have enough lesions to cause the fatigue" I described. What?

I stopped taking my Copaxone 5-6 weeks ago, and I haven't made an appointment to go tell him yet. I really don't think he has enough experience with the DMD's to make a good recommendation, as if it isn't a crapshoot to begin with.

I really want to take some time before (or if) I decide on any other DMD. I know he'll pressure me to start a different one, and probably scare the jibbers out me thinking I'll have a massive flare-up if I wait. (I scare easy)

I'm sort of starting not to trust ANY med at this point. I even think my vitamins are going to jump out of the bottle and slap me.

Debbie whats the name of med or compound?
My trial wish list was the estrogen estriol while on copaxone (gave me tysabri) or the discontinued interferon alfa n-3 (co pulled it for new oral being tested now for hiv).

Like Wiz said, our neuro is widely known-I was told by a traveling nurse he's known around the world.
He has been involved in the ampyra research as well as others. He told me as soon as I show negative results, or whenever I want to discontinue being in the trial, he'll pull me out.
"I'm there for you first," he said.

The direction of my care has always been my decision, after discussing everything with DH & me at length.
Guess I've answered my own questions...thanks for being great soundingboards!!:D

Debbie is Ampyra the drug you started thread about?

No...Ampyra is the "new" drug for increasing walking speed/distance. It's a reformulated drug that was available in compound and was approved by the FDA as the first drug specifically for a MS symptom.

The thread is about a clinical study run by Ely Lilly...seems to work to contain B cell activity, from what I remember. Neuro seems to think this will work against what he's been seeing in terms of my symptomology...

Ok. I'll look it up thanks. Though if you know the name of the compound you'll be getting, feel free to type it so I dont have to do the leg work :)
I see my neuro Wednesday and was just typing my numbness progression notes to hand him. I log everything. There's no better perfect trial patient then me! Goodnight.

edit - Thursday it is and finally got them to leave the slot after me open so I have 1/2 hr thank god.

I don't like my neuro. He's an a"$. Never gives me reassurance, advice or explanations that answer the question I ask.
I don't want to be molly coddled, but all the same it's nice to feel like I matter. He just poo poos me and barks orders.
I'm dropping my neuro and asking for a new referral just as soon as I need to go to my GP next.

I only questioned my present Neuro of three years, twice. She asked if I was interested in Ty, I said no. Then last visit she asked if I was interested in Ampyra, again I said no.

She knows, and believes, by testing me, that LDN has helped me more in the last 6 years than anything I was on previously, so it is not an argument, more like a discussion. She lets me know my options but doesn't bark orders.

If she feels the need to go into more depth about something, then we discuss that also. She called my PCP to have LDN prescribed for me in 12-08.

Well, it is up to me, not her, she doesn't have MS, I do. I know she is a keeper. I like her attitude and she gives full, complete exams each time. Not big on MRI's, until I did so well on LDN that she checked for progression, there was none. Oh happy day.:)

Don't get me wrong, I still have lots of MS problems, but I deal with them as best I can. I try meds, if they don't help, why waste the time, money, and side or after effects?

I would not have a doctor ordering me around, just to please their ego or push drugs. I have been lucky most of time when I had to switch Neuro's.

I have had some green (not knowledgeable) ones, and some "My way or the Highway ones." They became my one or two visit Neuro's, and then I was out searching for a new one in my medical plan.

Patients have rights too. :)

I printed a bunch of LDN stuff for neuro tomorrow.
Also printed docs on estriol, Minocycline, and a vaccine called BHT3009.
Also called and had FDA fax paperwork for estriol to neuro. This will be last time I push for estriol with him. Also called Acorda and spoke with pharmacist. Also printed out my last 4 month MS progression report (not good). I wish I had my own prescription pad.

:ROTFLMAO: :yahoo: :ROTFLMAO: :Crazy 2:

The neuro I went to for four years moved across the state. I loved him, and I trusted him. He listed to me, I listened to him. It was great.

I've only seen my new neuro once. He seems okay. I'm his only patient on TY, but his office got everything set up for me to change infusion centers to one that DH used for his chemo, great nurses, and just five minutes from the house.

I just have to get used to this new one and quit comparing him to the last one. :)

I'm at the point in my MS where I make more decisions in my treatment, whether or not to try something for MS. I try to stay informed, but there's so much going on now with treatments. I'm not afraid to question my neuro (or PCP) about things, where I used to be like a sheep and do whatever my doctor recommended. It was very liberating to take charge of my own health!

I waited / progressed 3 weeks to see my neuro today and they call this morning to tell me its cancelled!!! Why?? Because he said he's done all he can for me and was offended I had A: extra time allotted for appointment B: pushed for ESTRIOL again! They said we'll mail your records to you if you like. Im sorry but WTF! I knew he was too old. Ive always gone after grey hair doctors but Ive learned my lesson. Neurons dont weave new connections as well when the grey hair sets in!!! Hope i dont offend anyone but im ******! I guess my 3D MRI pictures I compiled were too much for him to handle! I wanted extra time to review mri he just ordered and talk meds. jeeze.
Florida sucks for doctors or at least this area. Neuro #4 oh well.

This is the only part of NY I miss.

Ok had dinner and pulse rate is back to normal. I made appointment with new neuro. Hey at least i'll get 30-45 minutes this time. Im told try playing dumb. Today was very very frustrating. Boy I wish the Prozac didnt cause sweaty side effects. Well I have 3 more weeks now to wait.

So..to the thread's title..Do you all question your neuro's advice? lol. yes.

Eddie~where are you in Florida? I know a couple of good neuros.

[quote=EddieF;644641]
I knew he was too old. Ive always gone after grey hair doctors but Ive learned my lesson. Neurons dont weave new connections as well when the grey hair sets in!!! Hope i dont offend anyone but im ******!

So that's what's wrong with my Neurons.,,my roots have grown out.. :eek: :D

Well now I'm pizzed!!!:mad:

Sally :) I was so upset/mad/pizzed/and everything else yesterday. i still get mad thinking about what he did to me. I was excited to see him and show him what i did with mri images and to continue discussion/paperwork for Ampyra, estriol, show him my log of exercises ive done over the past 3 years and more. Getting mad typing about it now so I say bye for now :)

I understand your anger, Eddie. Some holier than thou Doctors, especially Neuros, are insufferable Jerks.:mad:

I wish you luck with your new one. :cool:

And sometimes it doesn't matter what color hair they have!

My neuro dropped me! Just for having the fda themself fax neuro IND form for estriol so all would be legal, nothing under the table, done right by law! He pushed Tysabri on me last year after I requested estriol about 3x and I finally gave in because im going downhill fast. Thankgod I made new neuro appt. last week for next week. Yesterday will likely be last Ty infusion under his name. I'll stop rambling since I can't use the words I'd like atm!

Link to pic of letter I had to drive 10 miles for today and to my surprise what it said:
http://neurotalk.psychcentral.com/al...pictureid=5227

I'm not too surprised since most God-like Neuros, don't like to be told what to do, by their patients..:rolleyes: I am so sorry, though, ED. let us know how it goes with the new Doc.

:hug:

I think the problem for some neuros is MS patients neither go away cured and/or most don't die. They always come back reminding the neuro how little the neuro knows or can do about MS. Keeping up with stuff about MS is a full time occupation. I hope my MS specialist neuros are talking MS with colleagues all the time (lunch. Men's room, hall, etc.). I found my one general Neuro lacking in MS area. MS is a specialty area.

I agree. MS is definitely a specialty area, but even some specialists are maddening.

Eddie, I can feel your pain. I tried Copax, then had to switch to Rebif. When I had an allergic reaction to the interferon, my neuro insisted on Tysabri. After much discussion with my hubby, we decided against it. Way too many weird reactions to meds under my belt.

My neuro told me he was over his head (honest, at least), but the part that made me mad was that the specialist on staff at that group refused to help me after I said "no" to the Ty. :mad: My neuro didn't leave me in a lurch and transferred my case to the local MS Center. Originally had an appointment this month, but the head dude took my case. He had to reschedule because he had an emergency confrence for CCSVI. See my Rhuemy first in June, and I'm thinking of bringing up the subject of LDN when I see him.

Hope the next neuro is more helpful for you! :hug::hug:

I think the fact that MS has so many different ways of presenting symptoms makes it a unique disorder to treat. And the neuros have to keep up with the current research, theories and clinical trials to be able to help their patients to the best of their ability.