What a long strange trip its been.
Diagnosed with TRPS this year, ok.
Have a stroke in June, unknown cause. Blood clot in PCA. Occipital lobe, thalamus and hippocampus affected. Stenosis in proximal p3 and p4 segments.
Tons of tests and drs appt, five days on a neuro floor, tests come back fine. No pfo, no pe, no dvt, cerebral angiogram clean, cbc fine, no APS, echo showed what I already knew about my valves and crap, no high cholesterol, don’t drink or smoke. Ana fine, factor v fine, etc
Have telehealth appt with geneticist from rare disease center.
“ I don’t think your symptoms line up with TRPS, come in for bloodwork and possibly more testing and an in office exam. It’s quite possible you have more than one problem at the same time”.
Trek to the city, get it done. Some labs are
off but I don’t know the clinical significance yet and it looks like I have to go in for an exam and possibly more testing.
See an ortho for hip, knee and leg pain one month after stroke. Surprise, hip dysplasia and maybe some labral tears. But we need you to do pt first before we get you an mri.
Do pt, im 3 weeks in. Pain is no better, and I have a lot of leg weakness and tremors when I lift my legs at all, or pt stretches my legs. Weird af but ok. But my rom is excellent and I am proud of that.
Overall I’m hanging in there, just confused and pissed because I thought TRPS was truly the end of this and that it truly was the cause of all my problems. I’m just glad this is all happening during summer vacation, which is pretty much getting ruined this year.
I got lucky I have no neuro deficits but I do have side effects. Photophobia is one and headaches are another. Topamax works. I also get shooting pains randomly on the affected side but neuro said be patient, lots of inflammation happens afterwards, it’ll get better.
I hate not having answers. I think that’s bothering me the most. And why the f me. How come it’s me and not my sisters or my mom or my dad? They’re all much more unhealthier. Life is so cruel sometimes, man.
On the plus side, when I was numb on one side I had no pain and they did give me oxy for the headaches and that helped a lot. And my roomate was really sweet, she lives up the road from me. Btw, the unit was coed. First time in my life I ever heard of that.