I have neurosarcoidosis with neuropathy in hands/feet, shortness of breath, bouts of erythema nodosum, diabetes insipidus, srojen's(sp?), heerfordt's, cpap for apnea, take remicade, zoloft, atarax, ambien, two diuretics, nexium, clonazepam, cymbalta, advair, 120 meu of potassium per day. Began having ED problems several years ago and it has worsened. The urologist gave me pills, drug inserted in urethra, and shots which he said would work positively. Then he sent me on my way. No other tests performed. I have an erection that starts out strong and fades away with orgasm somtimes. Penis not as sensitive to touch as it once was. I am going soon to see a neurologist again and first time for endocrinologist (neurosarc most likely causerd by lesion on pituitary or hypothalamus). Where do I turn next for help with the ED? Is an implant an answer for someone like me? Age 58 diagnosed with the sarc in 1996. It caused me to stop working with a medical retirement and SSDI. Help!
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Q: Tried pills, vac device, shots. Urologist uninterested. Have neurosarcoidosis. What is next step?
I don't know if the urologist is "uninterested" - maybe challenged because you clearly have a variety of conditions going on and both the conditions and the meds may be causing - complicating - excacerbating the ED.
So the fact that you are seeking advice from other doctors is reasonable and I would not assume that you won't get help from these 2 specialists - let's be a bit optimistic. That being said, my next words may sound a bit harsh - but i would ask you if you are carryin extra weight -causing the apnea - because if you are then I'll tell you htat I've written several blogs relating to the causes of ED - and being overweight and/or having apnea can be at the root. If you are overweight then arterial compromise in the genitalia and even nerve damage from that physiology can happen. The meds you are taking can also be causing the problem - again, I'd see if some of the medications can be tapered and other therapy instituted. Clearly your neuropathy may be a factor - so seeing the neurologist may offer some substantial insights. You are on the right track from the perspective of seeking advice - but I'd see what you can do yourself to resolve some of what is going on - even minimally and of course with advice from your doctors.
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