this is pretty interesting. obviously, we all are seriously damaged but the more proof you have the greater chance for an underlying reason. did you take Accutane and ssri only? please keep us updated
Yes I took Accuatane and SSRIs. No Propecia. I will keep you updated. Just started taking my meds last week.
thanks. im interested in seeing him as well. I heard sometime last year he admitted to PFS having no cure but as we know PSSD/Post Accutane disorder and PFS seem to all be very similar in symptomology and likely underlying cause. Do you anticipate he will be very expensive? I’ve never even heard of some of the tests you’ve described but I’m intrigued.
Unfortunately it is kind of expensive. That’s probably cause he has all the new tests. Also he spends a lot of time with clients. I spent about 8 hours over 2 days at his office. Worth it if you can see him.
What spinal cord problem you have, maybe it was there all the time and it damaged your pudendal nerve? I don’t know what drug you used but maybe the cause of the problem stands elsewhere…
I too have a little herniated disc, not from Accutane. But its just a hernia and it affects my pelvic muscles (buttock), not even my back hurts. Strange.
I don’t know if I have one yet. It’s just Goldstein’s theory based on my QST results. It could be coming from the brain though. More of a functional nerve damage.
@jrums01 Hey, quick two cents - I’d be very careful with Dr. Goldstein’s analysis. I know he’s very respected around here, and I’ve seen him twice. He’s done a tremendous amount for our cause and I don’t want to belittle his impact in any way. However, my experience was that he gives each patient very little amount of his analysis and time, and throws a lot of disparate ideas around with very little follow through. I found it borderline impossible to have any kind of meaningful conversation with him as he seems to repeat the same diatribe about Finasteride and how bad it is, and doesn’t really ingest your questions or listen to what you’re saying. He’s very very good at prescribing drugs however… Of course, open to anyone else who had a different experience.
If you suspect you actually have pudendal nerve damage; that’s a very serious thing and has a lot of implications. Simply my opinion here, but I would highly advise you get one or two more opinions from a neurological expert before heading down the path of believing you have actual nerve damage.
Did you consider any of the things he prescribed you to be helpful? I assume not if you’re still on this forum but thought I’d ask as I was considering visiting him this year
No but I was to 2-3 months and then we will switch some things up.
I agree somewhat that he is not fully on top of everything all the time and seems to have the same protocols. I’m not sure his theories are correct. Also don’t these doctors know that hormonal bloodwork doesn’t always matter and often shows normal. Doesn’t mean it is. Our receptors are fucked up. I’m sure he’s aware of this that’s why it’s so hard to treat. I don’t hold much hope either way man.
I spoke to Goldstein again tonight. I’m skeptical of him and his spinal theory of genital numbness. He also thinks this will help emotional numbing. How? Will it also help my insomnia, genital shrinkage, loss of taste and smell, dry, thinning skin, etc.? I swear I am so screwed.
Which ssri did you use again?
That’s bullshit, there is no pudendal nerve damage, i don’t understand how a top Dr. can tell you this bullshit. I can smash his theory in 5 minutes with facts, and i bet there will not be any decent reply from dr.'s side.
I researched so much for last 4 years, this dr. make me laugh.
I used them all at one point but Prozac was the last one
What do you mean exactly that it’s BS and it’s not nerve damage? I’m just trying to see what you’re alluding too
Hey. I am another PFS patient who went serious side effect and had wishes for death because the period was just way too hard. And I can relate to you how you feel. Right now I am recovered, although I had blurred vision, severe cognitive disfunction and sexual disfunction as well. I got them all back.
Although I may not be a medical expert, I am in college studying chemistry and biology & I have clinical experience as well while serving in the military. I assume although the tests may show your nerves functioning not properly, it may be only the signals not transmitting properly since we took medications that inhibits hormones, which basically are signals.
Sadly, I also agree that although Doctors are respectable for their time dedicated and their IQ, Ive seen many doctors not truly caring about the patients, and they only know what they learnt from textbook and conferences. Ive seen them make a lot of wrong judgements, minor or major.
Sorry about your condition, but believe it’s recoverable as many of the people here did. My prayer goes out to you tonight brother. Sincerely.
Awesome how you recovered happy for you! You should tell your story in the recovery thread! Thank you for coming here and giving us hope!
I think you and the doctor should have gotten it clear whether he meant temporary neuropathy or damage. When it is really cold or you have been sitting in the wrong position maybe you lose sensation for a bit. It doesn’t mean your nerves are “damaged”. Likewise we may just have inflammation or something that impairs nerve function and isn’t “damage”.
Exactly. I couldn’t think of a way to explain it any better than this.
Just because there’s lack of sensation doesn’t mean it has to be permanent nerve damage.