Once again I find myself in that same dilemma of knowing but not knowing whats next when it comes to my medical issues. After testing positive for the HLA-B27 and a positive ANA profile, you would think that all would be cut and dry, move towards diagnosis and then towards the probable course of treatment. Not so fast! It appears that with the complications of having an ANS disorder lurking and too many possitive signs of a high number EDS disorder, this has even cause the new doctor to second guess his next move. Knowing how I can test positive for something in the morning and negative in the evening has him quite scarred and for good reason, I have given him a spreadsheet of my bloodwork over the last ten years all catagorized for easy viewing, this made it very easy for him to realize that again, is he dealing with a true AS situation, or is it a false positive HLA-B27 which will lead to the, why would it show a genetic mutation in the first place? I can not believe that I am now faced with yet morei iobsticles and fewer answers as I go. The only person that made any sense at all was the Optometrist who explained that the ANS disorder was causing severe focus issues with my eyes and the only way he could see a possible solution was to fit me with glasses. Its a weak prescription at best and progressive lenses which someone having balance issues and nausea should really be prepared for many uncomfortable situations to come up just by merely turning your head too fast. I think I am finally getting used to having them on 24/7 and I have to admit, it has kept my vision more accurate on a daily basis rather than one day I can see the next I can't.
I find that the most draining of all the issues weighs heavily on whether I do too much physically or I get into a heated discussion with someone. This causes major muscle failure and uncontrollable spazms thoughout the body which bypasses any of them medication that has been administered to prevent those symptoms. It literally drains me to the point of exhaustion and its a feeling I truly hate with a passion. Probably the most helpless feeling in the world that you know your body is letting you down when your mind is wanting to go do something. I have read up on this and most of what I find leads back towards ME/CFS which is quite possible with any ANS issues present. Of course its one of the most difficult to diagnose because it seems most doctors want to believe there is something else wrong with you rather than the fact that its just possible that severe fatigue is truly the culprit.
I found that steriods did help with the joint and bone pain to some degree and as I am now off the dose pack for several days I am beginning to notice the return of the nagging pain that was severe in my leg bones especially and hip joints. I hope that by the doctor giving me that dose pack and it having some benefit, it leads him to some conclusion of what may be next. I dont take pain medication with the exception of Naproxen, (Turbo Aleve) so unlike most of my fellow sufferers who can turn to the percocet, or oxys for relief, that world doesnt exist for me. I unfortunately have to grin and bear it. Not sure how much longer I can endure that sort of punishment but for now, I just dont feel adding more pills to my regiment of ridiculous medication intake is in the cards for me at the moment. Besides, having two small children to attend to half the week which requires alot of driving, I dont want anything that would hinder my ability to drive in any way. My exwifes attorney is just itching for another reason to be a pain in the ass, so I am sure that using my medications against me would be her next planned attack. I have no respect for that C ending in T. I am certainly not done with her by any means, I'll let her have her glorydays with me thinking shes winning in court etc and then "surprise bitch" bet you didnt see that coming. When you live in a smaller community, its wise to make sure that the person you are going after doesnt do alot of checking into your past as you are doing to his. It could become rather embarrassing. Touche'
So at present time, I am still no further on the extreme fatigue, the burning under the skin, continued memory loss, the excessive shaking, in ability to use my hands at times to open things etc... I'm glad we have the diagnosis though! Hats and horns on that one. I didnt expect it to be overnight success but I guess I just figured that now that everyone was on the same page, it would be smoother. I'm not seeing smoother yet. I am however seeing the return of my narcolepsy. I love just slipping off to sleep and waking not even knowing I feel asleep in the first place. Its especially entertaining when at the computer sitting upright in the chair, fingers still on the keyboard. I think the cutback on amphetamines was good in a way, but I can see where its going to be bad for other areas. Damned if you do, damned if you dont.
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