Update on my mayo appt...it was a very emotional and frustrating day. Last week I saw my headache specialist at Mayo and he could only answer questions regarding the PTC and not my other Neuro concerns (same concerns my Neuro doc told me to talk to him about). So now I have an appt back with the neurologist and my Neuro eye doc because my vision is going downhill pretty fast. Good news is he didnt see an obvious swelling. He is keeping me on 1500mg of diamox and says I have to lose weight. That pretty much they will not be doing or talking about anything else until I get my weight down ( shunts, ect..)At this point I was telling him how hard it was to workout due to my pressure and he say I suppose it is but you have to do it. Im very scared to push myself harder because my vision is already declining...so its taking me a few days to wrap my head around this and today I did my workout. Slept all day afterwards but my workout got done. Tomorrow I see my personal trainer who works with people with medical issues and will develop another plan from there (even though she doesnt want me to be working out due to my head pressure)...so pretty much I have to workout and ignore my head issues in order to lose weight to hopefully improve my pressures...I dont know about you but I wish there was a better way to go about this! Im sorry to all of you that deal with this condition. Its life changing even for me when I was already disabled from my Fibromyalgia and POTS..I pray that we can bring more awareness to others and the doctors can find ways that can help us without it just being a guess. Keep pushing forward!!! Its all we can do! -Johnson
Posted on: Tue, 05 Nov 2013 03:24:54 +0000