I can’t find a neurologist who will see me I was diagnosed in2013 Yearly MRIs showed PPMS from the beginning 2019 was my last MRI Doctor said, “Your disease is progressing rapidly and you need to go on DMT’s” New Neuro in 2021 looked confused when looking at my MRI and then at me He said, “is this your MRI? You should be in a wheelchair with no cognition You have lesions all over your brain and spinal column If you won’t take DMTs why do you need a doctor?”
So much for having an “invisible disease”
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My thinking is Social Security disability would like a history of doctor monitored disease progression and I’d need.a neuro My primary says I look fine and maybe I just have a virus I no longer go to a primary
I think doctors get frustrated when patients don't follow recommendations. It often leaves them with few other options. Outside of DMTs, there is very little they can do, so he does have a point. I don't take them, so I don't go to a neurologist. I can treat the everyday quirks symptomatically with meds I can get from my primary.
Frustrated? Because they have the agenda to stop disease progression and ignore my happy life progression? Doctors assume the role of “You have a problem and I’m goi g to fix it TO you”. Life happens FOR me. I didn’t ask a doctor to DO something TO me Just want to have the conversation without the ‘white coat’ planning the retort before
Your Neurologist can monitor your condition in ways you cannot. I am no longer, after many years of doing DMT's, on anything, for anything. My regular Doctor who does all my blood chemistry says, I'm good. My prostate, after changes in diet from an ever increasing PSA which I tracked as prostate cancer runs in the family, is now low again, and my prostate is "normal without any irregularities". Fun up your but exam that at least I can sleep well at night, My drug portion of my insurance is used only for immunization, which I do everything I can. But, your Neurologist, with MRI's... can give you the true story of how you are doing. Besides, if you do have a relapse, often there are meds you can use to minimize the effects of the relapse. Just don't become dependent on them. So, although I strongly feel that nutritional changes have gotten me over the ever worsening M.S., I still have years of accumulated things that I live with everyday, like nearly everything on the list I just saw in the last issue of Momentum magazine, and my Neurologist's checklist, I am now relapse free for 5+ years! I live on a pauper's budget, eating the best I can, avoiding anything processed by anyone other than me. (Veggies are relatively cheap & nutritious!) I cannot afford organic, unless by the week's flyers I study every week, this place offers it at come on in pricing, so I use a fine $1 brush which lasts years, to scrub the best I can, including the most difficult things wrt pesticides, strawberries, so that I may still eat them with confidence. Don't give up your Neurologist. If you have one that specializes in M.S., that's the way to go. Yes, all doctors are licensed drug dealers. (Okay, I'll duck the bullets flying thru the windows trying to get me for that statement), but what else can doctors do? They can offer advice on what you can do without prescriptions. I had one of my M.S. specialist neurologist, advise me on something that changed my life for the better. I was in pain, keeping me up nights in pain, Not a script he could prescribe, but a CBD cannabis changed my life, so that I could at least get a nite's sleep, But I still went "comatose" every day for years. How to get over that I learned on my own . (Gut chemistry change by accident - juicing fruits and veggies kept me from going comatose, at least till I ate normally at dinner). But anyway, the whole diet thing, not avoiding wheat or dairy had anything to do with it, I still do both. But something did make a change, and it's working. Processed Foods Avoidance, and Lots of Fruits and Veggies as the main part of my diet. Now if I could only drop more of the items on my M.S. "gift list". Don't give up your neurologist, even if you aren't on any meds. And never give up trying t fight this disease. When you do, you surely will loose.
Neurologists don’t want to “monitor disease progression” if I won’t take any DMTs And There’s no scientific evidence base that claims DMTs are effective if you start taking them later than 2 years in And only proven in clinical trials with RRMS but they throw them at PPMS and hope for the best
Mine is happy to, but seeing as I haven't had a relapse or worsening of anything in the past 6+ years, not much to do on their part. I didn't start DMT's many years ago for about 2-3 years after diagnosis and after about 3 relapses.
Ummm not sure where you got that information. I wasn’t even diagnosed until probably 30+ years since the onset of MS until I had a very nasty relapse in 2017! All of the issues I was having were discounted by doctors as being normal and they clearly weren’t. They didn’t know any better. I started a DMT well after two years of having the disease and I can tell you I am doing so much better now than I was five years ago. Yes they diagnosed me with RRMS but my MRI was probably similar to yours I had so many lesions & black holes they couldn’t even attempt to count them in my brain, I have them on my brain stem, my spine cervical and thoracic. I can still walk but not like I used to or very far.Being from a medical family I can tell you you need to advocate for yourself. If the doctor is not listening to you calmly tell them I don’t feel you’re listening to me and have the conversation.. I’ve had to do that myself for some of the same reasons you’re citing. We now have a wonderful relationship! I am not sure where you live but find the closest LARGE Hospital (preferably teaching) and give them a call. Tell them that you are looking for a neurologist that specializes in MS and any other specifics you would like and see what they say. You may want a new PCP at the same time 🤔
Great advice Did all of the above I joined the Consortium of Multiple Sclerosis Centers (CMSC) and have accrued enough CEUs to take the test to become an MS specialist I have no way to get to my providers in the big city Paratransit only picks up locally No local support groups No accessibility in so many places I can’t move so I’m navigating my options Thank you for your time and thoughts
Doctor was looking at my chart as he walked in Looked up at me shocked and then showed me MY folder and said, "Is this you? Is this your MRI? You should be in a wheelchair with all those lesions" Doctors only see a diagnosis and hear complaints I just want one to see and hear ME!
My secondary neurologist (also an m.s. specialist) having run the M.S. program at a teaching hospital in the big city, told me the same seeing my mri's. He said that my mri's were the worst he ever saw, after years of running the program from which he came, and I already spent many years on DMT's. But I got over the comment. And after years of seeing both this and my previous of those many years on DMT's I switched and went with his arsenal of M.S. DMT's and associated side effect counter drugs. Till after developing flue like symptoms continuously for 2+ years I was told to stop everything. Didn't need the drawer full of scripts for lots of things. Been drug free since.
I don't like to hear of anyone of us being "misunderstood" or not getting the right medical tx we need! I see a Neurologist who is as (Goldilockssearching Fam mentioned ) a MS Specialist. Praying for you, keep us posted - call your local hospitals and inquire with their "referral line" - they may have Neuro's/MS Specialists. Please don't give -up
completely wrong but Neurologist got it right My holistic provider diagnosed me when I first met her and referred me to the Mayo Clinic for confirmation Social Security wanted me to have a neurologist with a report affirming diagnosis
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