Finally had my appointment with the local neuro (not an MS specialist) who isnt happy with the look of my optic nerve, but since I refuse to take the DMDs he said he is not surprised that my body is fighting hard. I told him how unhappy I was that it takes MONTHS to get to see him. I have been on the emergency call list for 6 weeks! WTH?!

He is sending me to either Boston (freak out!) or back up to Dartmouth to see the neuro/opto specialist. She deals with neuro conditions of the eyes, so if you look in and it looks pretty normal, most eye MDs would not know how to pick apart what is going on, but this one will. Takes MONTHS to get to see her. or I could go to Boston and be seen in a week or two. I dont know what to do. DH HATES Boston traffic, its an easy city to get very lost in, but maybe we could go the night before, stay overnight, and do a trial run. this would give us a night out. Sigh...dunno. Will speak to regular MD today.

He spoke of things like PPMS since I am having fewer relapses, but more symptoms. He said I am not having clear cut lines that mark periods of time of "when it starts, and when it ends" and there fore he may be thinking of speaking to someone about changing my dx. I asked what dif it would make to me. he said "since you dont take the DMDs ...none. we would still continue to treat your symptoms, and try to stay ahead of it, but it would just more appropriately fit your symptoms. He will see me in six weeks and we can re think it then. He made the appointment so that I didnt have to wait 6 months to worry.

He is really worried about the visual migraines and the actual migraines not being controlled, but each med we have tried ends in disaster. BP so low I cant stand up, gastroparesis...He wanted to put me on meds for bladder spasms but all of them say "if you have delayed gastric emptying...dont take this" stuff in their handout. So...im kinda stuck on that one.

Im kinda worried. should I stay with local guy that I like? or should I suck it up and go back to big girl hospital and deal with the folks that have an MS clinic? even tho there are NO MS MDs in it right now. The big man retired, and so did half of the other staff, so its being run by interns right now.

GAWD I hate this stupid disease! so, thats my check up. All chatter, no action.

Can you see both of them? The optic neuro might be able to detect and maybe even help with some managment suggestions.
The MS clinic in Boston, even with the interns would most likely offer a more comprehensive assessment and plan for all that you are facing. The MS clinic I go to has physios, occupational therapists, nurses and social workers who specifically offer help with MS.
I think that it is worth seeing who ever might be able to more clearly identify specifics for us; even though it is tiresome. Maybe they will look into Devic's Disease for you as well. That's where I'm at now and have been told that the management of that is different than for MS.

When I need to go to a major city and don't trust my driving once there, I find that taking a hotel on the edge of the city and taking a cab or bus from there to where ever I need to go helps to ease the stress. You might try calling the MS clinic in Boston before hand to find out if they have a social worker to help you get around. The MS clinic where I go offers that and they can also arrange for low cost accommodations that are specifically for out of town patients (Easter Seal House).

I hear you on the gastic side effects and medication issues. It is definitely a problem; and sort of a balancing act between trying not to send the GI tract into a tail spin and getting some relief of other symptoms with medication. Most medication also affects my hypothyroidism as well.

Take it a day at a time...sometimes its all that we can do.
With love, Erika

Curious...what did they say about the bladder spasms & where do you feel them? I have spasms in kidney area...were only on left side & now migrated on lower right side (with urgency & scant output). No one's really address it yet (geez, another phone call to PC).

We can only hope to have some famous Dr. get/have MS...then things would really happen (and no, don't wish it on anyone).

Wishing everyone a nice weekend (lol, without symptoms?),

Stacy

PS: How far would you go for a good MS doc?

The local MD thought I might have "over active bladder" and wanted to have the "detrol discussion" (sorry, its a commercial on TV) and the neuro thinks because i just had a bladder infection it may have triggered my pelvic floor into being unhappy. Since i dont have to pee in the middle of the night, and my sx get better when laying down...so, I am switching onto baclofen 3x a day to try to get this to break. report back in 2 weeks. UGH!

Im going to see the naturopath tomorrow. This outta be fun.

We are discussing Boston. its a trip, my hubby hates traffic/crowds...so, it would be hard on us both.

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.