Okay I went to the rhuemy today and was cleared for not having a rheumatoid disorder. Yippee...

But (I swear always another shoes to drop) it would appear as though my current meds still are not controlling the spasms that are literally ripping my joints apart. The rhuemy referred me back to the nuero, the neuro referred me back to my PCP, my PCP would rather I go through the neuro since it's the MS and she isn't a specialist in MS. She's familiar with it, yes, but has as much info on potential solutions as I have through the net.

Now the PCP will work with me, and the rhuemy gave me a few suggestions. One: OT and braces, kind of regardless of what else they do treatment wise I need braces and not OTC braces. Two: the baclofen pump. Three: change muscle relaxants or Four: possibly all of the above in an inpatient OT center.

So I can go to my PCP on Monday and present her with the options, but rather know she's going to look at me and ask which option I'd like. (Honestly, I want whichever option is going to help me in the long run)

So out of curiosity if those were your options which would you chose? Or is it time to find a new neuro? I mean am I wrong to think that the neuro should be the one helping to find solutions for MS symptoms over the PCP? Aren't they supposed to know more about the treatments and therapies over a family practitioner since they're the "specialist"?

Your neuro seems to be "passing the buck". I would want my neuro to be the one dishing out MS treatments. Plus, if you have insurance they will probably tell you that you have to get a referral from the PCP to the Neuro since it's a "specialty" condition. They just make it so hard............

True, many insurances do require referrals, for everything else that Humana is... At least it doesn't require any referrals and there's only a small handful of things the need prior authorization. Now if the neuro was in the bordering state I could understand maybe, if they said I needed to see my PCP first taking insurance into acct. But it's a really common insurance carrier in this area.

Either way my neuro's office was pretty clear, that for discussing those options it needed to be with my family doctor, not them. Just seemed bizarre to me, so I guess it's time to find a new neuro. In the meantime, has anyone here tried the OT/PT boot camp? Or rather an inpatient OT program?

Hi Starznight, I agree with you and Kitty that your neurologist should not be referring you back to your PCP for treatment options.

I like the idea of switching to a different neurologist. Your PCP seems to be accommodating, so perhaps she knows of a good one in your area. You may also possibly benefit from having a new specialist to give you a fresh perspective on your condition.

I switched neurologists when I thought mine was too rigid and steeped in tradition. When I chose another one I sought out a younger doctor who I thought would be more flexible.

Yes, the PCP has actually been suggesting for a while now that I see a particular neuro that she's familiar with. I rather trust her judgment on whether I'll like him or not, since she also knows well my old pain management doc (we both ADORE, him), she knew one of my old PCPs, the one that ran away from home on me and though she never worked with him really, she knew him from various functions and got a lot of his patients when he left.

So not only is she extremely accommodating, but she's also aware of what I'm looking for in my care providers. Not just a doctor with a brain but one who realizes I have one too. But also by switching neuros it'll put everyone in the same health group, that's also connected to the local university. So there should be fresh ideas bouncing about for sure, since many of the specialists also work as adjunct professors. And also with everyone in the same group they can directly view each other's notes, not just see lab results and dxs.

That will certainly make things so much easier on me. I mean I have my own medical files, labs, films and what nots that I've been toting around every time I see a new doctor. I have the info given to me by various doctors, but I'm lacking in what the doctor's impressions are, why they sent me for this lab or that one or why didn't they do, and the various other silly questions that I honestly can't answer sometimes. (A few of them I can answer with the younger doctors though, they didn't do that test, or that treatment, because the technology wasn't available at the time, I'm only 35 but some of these young doctors make me feel soooo old )

Starznight, it seems that you’re in an ideal position to make a switch. My current neurologist is affiliated with a university hospital, and it is so convenient to have everything in one place. All of my MRIs and test results are online and I can easily authorize any physician in the group to access them if I want.

You hit on an excellent point when you mentioned about doctors realizing that patients also have a brain. So many physicians, especially neurologists, seem to have a God complex and take such a condescending attitude toward their patients. I think this is probably less true of physicians in a university environment, but I am a retired academic myself so I’m probably a little biased in my opinion.

i also think the switch sounds like a solid idea.
it's hard to know which option i'd try. switching meds might be the easiest and cheapest. but you also have to give it time to work...or not.

a university system may also have all these services at their disposal.
i hate drs that put their patient in the middle. i don't think your dr is serving you very well.

Congrats on no rheumatic disease! That's good news.

In my opinion, I think a combination of therapies works well. I did not find baclofen helpful to me at all and it made me so groggy and irritable. So, I don't have any experience with that. Valium was way, way too strong. It probably helped with the muscle spasms but I don't know because I was sleeping all the time. I now take Ativan and that really seems to help me the best in regards to medications. I have done massage therapy and highly recommend it. The MT would do a gentle massage for 1/2 hour and over time, it really helped me a lot. I have done PT and OT and both have helped quite a bit. I could no longer afford the MT so as far as combination therapies have gone, the Ativan and OT/PT have worked well for me.

I don't know if that helps you with your questions as this is just my experiences based on what I have gone through.

A switch in neuro may be just what you need. Did your current neuro give you a recommendation for an MS specialist that you could see?

I do agree that sometimes it is great to see doctor's that are affiliated with universities. All my specialists are and I really like that not only can they view my test results and medical record, but they also know each other, for the most part, and are on committees together and such. It's kind of helpful in many ways. And, the cool thing is, most teaching facilities are up to date on a lot of therapies, new treatments, etc. I have found that to be a plus. All of my specialists are either professors or assistant professors who allow interns and residents to meet with me as well. You have many "eyes" looking at you and your record. I have also found that at a teaching facility they allot more time with each patient (anywhere from 1/2 hour to an hour). There are no 10 minute appointments.

I know that you will make the best decision based on what you have going on and with your doctors. Let us know what you decide.

Sad thing is, my current neuro is "supposed" to be an MS specialist.mthe biggest reason why I chose her even though she was affiliated with a health group I have little use for. But apparently while she can diagnosis it, she's not that great at treating it.

Does she see other neurology patients? Sometimes neurologists are considered MS Specialist due to CEUs and such but also see patients with other neurological conditions. I used to see a neurologist who was an MS specialist but he saw patients with other diseases as well.

You can always interview other neurologists and then decide if you want to stay with your current one or move on and see a new one. I did that and loved the new one that I am currently seeing.