Typing on a tablet,some punctuation is a pain to get to so im skipping most of it.
Ive debated off and on doing the usual background info as far as symptoms etc. but since everything is so varied... I might as well comment on how i farted purple for a month and it would seem almost normal to folks dealing with this garbage, and completely alien to those that arent. So ill skip unless someone wants to hear it.
I got my dx feb 14 this year, worst valentines day in memory. Same day a good friend of mines wife ended up in the er almost dead from a failing heart. So suck in every direction. I read how it takes people years to get diagnosed, i went from fine tuesday to ms wednesday more or less.
I research as a hobby, always have. Tooting my own horn, qualified for mensa in the 2nd grade.
Once id worked through my hangover, first ive had since college, i started reading. Through that i decided that nothing i was reading sounded like a disease, sounded like symptoms. Further reading, decided it sounded more like an infection as a cause. The success and method of lemtrada reinforced that. So further reading lead me to wheldon.
My primary dr referred me to a neuro who said she would give me 1 week of minocycline and that was it. She was humoring me. I asked for a 2nd opinion and got referred to a specialist. While i waited for her i ordered my own meds and started treating myself. I was doing so for a month at least before i met with her, got a new batch of mris, met with her again and she prescribed, strongly, tecfidera.
By those previous mri my brain is fine, my damage is in my spine. Very minor dawsons and *maybe* 1 lesion in the brain. But its the same spot that has show up unchanged for years, i honestly think its just part of my brain. Only a few areas in my spine, but i worry about it. My brain i know can take a few hits, the spine not so much.
By now ive decided to ignore mainstream meds and to do "my own thing" (drs words) at least until the followup, and then decide if im on the wrong path. And that was today.
So last week i spent roughly 27 years trying not to move in the mri machine. My math may be off, but holy cow did that hurt towards the end. Brain and both spines with and without contrast. When i was finally done and i could crack my neck, operator flinched. It was LOUD. Anyways, i got copies and went on my merry. Looking at the scans at home, the 1 lesion that sent me to the er and started this whole mess was noticeable from space on the last scan. This scan, i dont know if i can find it. The rest of the scans just shades of grey to me.
So this afternoon i got to watch my specialist flipping back and forth on the scans. After a while she asks if im taking my ms meds. I say no. After much fighting with the tecfidera people over price they sent me the first month. Its still sitting on the shelf, every pill. And shes back to flipping.
A while later, have you ever taken ms meds. I say no. Back to flipping.
Finally, "youre really lucky".
Going over the scans she points out a couple areas that may be contrasting but says theyre "really really faint". The dawsons, still there but "whispy". My 1 brain spot, unchanged. I think its just my structure.
She says she was really worried about me when we first met due to the spinal involvement, but more than once said shes "breathing easy" now. She says there is nothing active in me right now and given these scans she would not prescribe tecfidera to me, but aibogio (i know thats not spelled right) if i decide i want it. No injectibles, No tysabri, and even if available, no lemtrada. Which is the only ms med im interested in. We discussed the other supplements im on and ill be doing labs to check my d b calcium and other basics. Otherwise, checkup in 6 months.
So it looks like ill be continuiing on this path. Tbh motivation has come and go but ive stuck with it purely because its what i decided to do. I dont feel good, i dont feel bad. Just tired usually, a little screwy from time to time especially when im tired. Pulse weeks, im run down 24/7 so today has been a long day. I figure no matter what, some damage has been done so ill never be 100% again. But im aging so that wasnt going to happen anyway. I just dont want to burden my family and so far it looks like thats obtainable.
Im not doing the full supplement regimine. 3 antibiotics as spelled out in the protocal. Im on flagyll pulse 7, day 4 of 5 currently. I take nac twice a day, unless i forget, all antis at night. General b and a mega dose b12 every morning. Moppers when i think about it. 100k units of d3 a week, split sunday and wed, with magnesium day before and day of d3. I also take around 4.5mg of ldn every night, ive missed it maybe 2/3 times. Off the top of my head, thays my routine. Im sure theres a couple other supplements if i go through my drawer but thats my life in a nutshell.
Oddball symptoms have been few. I havent kept track of them though. I had about a week where i couldnt lift the middle 3 toes of my right foot. They curled fine, the outside toes, no issue. But the middle 3 wouldnt lift or spread. I wear toe shoes to the gym, noticed it when i was getting ready to go. Slipping on a pair of vibrams when your toes dont spread isnt easy.
Other than my ramblings, this was my day. Hopefully i see further evidence of nothing in 6 months.