My Neurologist, Dr. Wade, at the Mandell MS clinic has MS. That's why I chose him to be my doctor. We swap exacerbation stories.

Speaking of doctors with MS, a friend was a doctor with MS and we were talking a lot about the time of my diagnosis. She recommended the Swank diet, and it was the best help I could have had, because of my hidden Porphyria, which made some drugs react atypically in me. She improved so much on the Swank diet that she continued to work as a physician the last time I heard from her, before we sort of decamped from Seattle in disarray due to my extreme pain and not knowing what to do about it.
I am wondering if Baclofen will be good for you, Dejibo.
As for neuro-opthalmologists, the one I saw in Seattle did not give steroids for Optic Neuritis. He said the literature showed recovery as fast without steroids as with. That was, of course, decades ago, so things might have changed. I have taken the one steroid which is OK for Porphyria twice this year, for inflammation and increased leg jerks and eye spasms, which were caused primarily by the forest fire smoke last summer and a repeat 3 weeks ago. Praying to get through this summer without smoke, or to figure out where to evacuate. Lord show me the way.
So my point it that a neuro-opthalmologist I saw did NOTHING but monitor me during the years I saw him. He offered a trial of Betaseron, which was the only MS drug available then, but on reading the package side effects list I declined and he agreed this was wise.
My optic neuritis stayed with me for eight years, with some improvements and worsenings, and then went away completely--until the smoke of 2011.
So going to Boston--probably worth doing if you can relax at all about it, you and hubby, and not expect it certainly to be a benefit. If you could think of it as a get-away trip....is there any fun at all on the way there? Are there back roads instead of freeways? I don't know much about Boston--was there only once on my way to see my son at Cornell, but it's probably worse now with traffic. Staying in a nice suburb and doing some sightseeing and taking other transportation to the clinic sounds great!
I had a wonderful time when I went to Johns Hopkins to see a specialist about Polycythemia Vera. The trip did NOT help a lot, although it increased my knowledge, but just being in a new and interesting city, and taking the shuttle to the clinic, was great. And the buildings at Hopkins were worth the trip to see. I was having a hard time walking and had to walk miles on the campus on sore feet, but it was still a very fun trip.
I had to go alone. My husband was in the last year of his life.

I dont use steroids unless my vision has gone, and there are clear signs that my optic nerve is swollen. Other than that, its MY belief that there is a price to pay later for the use of steroids, and I know someday that bill is going to be handed to me.

I am on the "makers diet" its a very clean way of eating and has NO chemicals in the diet. I dont eat anything out of a box. if I want mac and cheese I must make it. At first I thought they called it "makers diet" because you have to make everything you eat, but i was told its a bible based diet and its mimics the way they ate in biblical times. pure, natural and wholesome food that comes from the earth. I also only choose organic. Most food is grown in soil that has between 3 and 15 nutrients in it. Organic foods are grown in soil with 100s of nutrients in it. If you grow food in unhealthy soil, how can the food be healthy? We used to rotate crops to keep feeding the soil, but now we are Pharming (making crops for pharmacuetical use) and its causing the death of our soils round the USA. They plant corn that cant be eaten until its processed into feed/grain/HFCS...So, I eat clean.

Porpheria is still on the table in my mind, but my MD tells me I passed every test with flying colors, and IF it raises its head again, they are waiting with the kit.

im off...but you knew that.

Dejibo, I think your diet is wonderful. Not knocking it. But it's not the Swank diet if you have the cheese in the macaroni and cheese. No cheese allowed on his diet because of high saturated fat. I found in the early days after MS diagnosis that I had to stick to the diet pretty strongly for it to work, no exceptions. And then, as he predicted, I was able to make some small exceptions later. I do eat a little cheese now, but never enough to make macaroni and cheese, which I love, and yearn for, and just cannot have. There may be a way somewhere to make Mac and Cheese with skim milk and some kind of ....chemicals?....to make it taste like the real thing. But no. No Mac and Cheese for me.

As for your tests for Porphyria, they are not often successful on the first try. Bad lab procedures at both the collecting lab and the receiving lab can screw up the tests. I recommend the following if you can get it where you are: a blood test, sent to the Mayo Clinic Porphyrin Labs in Rochester Minnesota. I was unaware that such a one was still in existence until it was given me at Mayo Scottsdale a year ago, because they wanted to check my Porph levels as a sideline to dealing with Polycythemia Vera. I thought their complete blood panel was no longer in existence since the time I first had it 16 years ago. Anyway, just suggesting, in case the issue arises again. The important thing with Porphyria is avoidance of triggers. Like the smoke we had here recently and may have again with the wildfires. How to avoid that?

Thank you for your concern, but I am not on the swank diet, and probably wouldnt survive on it. I LOVE dairy and am not willing to give it up. its rare that we have mac and cheese and I frequently use it as an example. I wonder why that is? the point was that I dont eat out of a box. prepared, full of chemical stuff. If I want and finally break down and have mac and cheese, I go ahead and make it. I did look into the swank diet and was just not able to do it. God bless those who can.

As for porphyritic testing. the MD said he can only test me if I flare again, as to do so out of flare would only result in a negative result. He also is quite the naysayer that I have it to start with. He points out several inconsistencies with me and what the disease is. I dont know what the truth is, but I do know that if I flare again, it WILL include a full run of tests with it.

Thank you so much for your concern. For now, im doing ok. not great, but ok.

You know everyone has a different opinion and that's what makes us so interesting!

IMHO PPMS means never a remit from the beginning. I never have. My DXing doctor runs MS clinic at Johns Hopkins. More importantly I agree (hey, it's my body.) My mind goes to SPMS, RR turns into it (Secondary Progressive). One starts to not lose problems during remits.

Driving somewhere. Don't Cell Phones have GPS? We also use our old Tom-Tom too. Even kids get where they're going.

Not a Swank Diet person myself. Tried Detrol, etc. Made my mouth a desert. Took my self off them and noticed no difference except mouth felt better (but that's me). Many doctors don't help at all and really were not knowledgeable about MS stuff I found out.

dej,
when you said interns my mind said ewwwwwww.
i'd stay with your own dr. it sounds like they're thorough. at least for now.
or, you could make an appt (for upteen wks from now) and see how you feel when it gets close.

saying a prayer for you and your eyes.

I do have dairy, Dejibo, just not high-fat dairy. I too need milk. And I am not off grains--I do not have celiac.
Your doctor is absolutely right that it is hard to get a Porph dx when you are not in a flare.
The only thing that is consistent (with or without flare) is the blood enzyme test. For years it was practically impossible to get that test (although I had it during the last years when Dr. Ellefson was running the Mayo Porphyrin labs, so I had the initial benefit of it). Now it seems once again to be a possibility--since Mayo gave it to me without me asking about it, apparently just to cover the waterfront of tests. And it was positive, although not high positive...I was not in a flare.
The only reason I have brought this up with you, as you know, is that you seem to fit a porph profile. I have talked to hundreds of porph patients on line over the last sixteen years, and you fit the profile to me...but that does not mean you have it. I can't dx it. I just suggest that testing is needed. It made a difference to me when it was suggested to me on the Harvard Neurology MS forum. I found out how to avoid triggers and that helped me a lot. Now that I am really old, I guess the MS is asserting itself more than it was for many years, as well as other things like Porph (in flares) and Polycythemia Vera.
I think I've spoken enough about the possibility of Porphyria in you so I won't continue suggesting the tests. But I might suggest it to someone else if I see another person who could have Porph. You are suffering grievously, in my view, and need help. I wish I could help. I can no longer help myself very much as i was able to do years ago.