I’m a lawyer with 15+ years of difficult and challenging litigation experience (including 8 years for the U.S. government in Wash DC), not crazy or moronic.
I’m posting here to encourage others to talk to their doctors about trying methyl steroids, which POSSIBLY totally cured my 100% impotence in summer 2016, after 2.5 years of torturous total impotence. The treatment was recommended in Feb 2017 by a neurologist at the Mayo Clinic (best US hospital!) NOT for sexual dysfunction but to improve my balance/movement dysfunction not related to PFS. The treatment did not help those issues but in June 2017 I “discovered” my impotence was 100% cured.
Methylprednisolone is used to treat conditions such as arthritis, blood disorders, severe allergic reactions, certain cancers, eye conditions, skin/kidney/intestinal/lung diseases, and immune system disorders. It decreases your immune system’s response to various diseases to reduce symptoms such as swelling, pain, and allergic-type reactions. This medication is a corticosteroid hormone.
This is the doctor’s note:
I am well aware that this treatment is probably not normally recommended for sexual dysfunction. But no doubt I’m the only PFS victim to have “enjoyed” several interminable hours of five liters of methyl steroids being force-injected into my bloodstream! My libido had come roaring back in January 2017 before the treatment. I did not even attempt masturbation until June 2017 but - to my astonishment - my impotence was COMPLETELY eradicated by then.
My PFS “story” is extremely complex and in many respects atypical, so I’ll try to be succinct:
PRE-PFS
- I was perfectly healthy (except as noted) until summer 2014; I vigorously exercised 3-5 times weekly
- I RELIGIOUSLY ingested 1/1.25 mg of fin DAILY from 1999-2014, except as noted
- it immediately made me partially impotent but only for intercourse (not masturbation), so I had to use Viagra/Cialis always
- I quit fin for 6 months in 2001; quitting did not reduce my partial impotence or trigger PFS; so I resumed taking it daily
PFS
- fast forward to summer 2014 when I inexplicably could not sleep for more than 4 hours daily; had “perfect” sleeping before then
- I was perfectly fine despite limited sleeping until Oct 2014, when my sleeping gradually dropped to zero hours per day by Dec; my head felt like solid rock and I had to take a seven month absence from work due to misery
- I also became totally impotent by Sept for intercourse (Viagra/Cialis no longer worked); but masturbation OK
- I quit Fin permanently in mid-Dec; 10 days later, “PFS hell” pummeled me; my penis felt like a foreign object and erections ceased; I felt intense penis pain for several weeks but it 100% resolved; my facial hair stopped growing for four months; I “grew” distinct breasts (which disappeared April 2015); I “enjoyed” debilitating brain fog and hallucinations for several months; my eye skin areas turned putrid green/black for several months (but then evaporated)
- I had an appt with Dr. Michael Irwig (world’s top PFS expert) in Feb 2015; he confirmed that PFS was incurable/untreatable
- I became suicidally depressed and stopped eating, lost 80 pounds by April 2015; which caused severe walking/balance/double vision problems
- I totally stopped sleeping from Jan 2015 until April 2015. I just lay on my couch 24 hours a day, no TV, Internet, stopped eating and lost 80 lbs.
Finally, my sister forced me to go to the hospital for six weeks in April 2015. They were able to restore normal sleeping (7+ hours) through two nightly drugs:
- Mirtazapine (Remeron), prescribed off-label to induce REM sleep
- Nortriptiline
They were unable to correct my other health problems which had developed post-2015, including total erectile dysfunction and severe dizziness/disorientation/balance, which caused me to start using a walker in May 2015.
I have had 6 head MRIs, which proved inconclusive.
LOSS OF VOICE IN DEC. 2015
Overnight I woke up and my natural speaking voice had dissapeared. Another head MRI proved inconclusive.
I had to quit my legal career and went on disability in Jan 2016.
SLEEPING PROBLEMS RESUME DEC 2016/MAYO CLINIC
In Dec 2016 Remaron/nortriptyline stopped working and I stopped sleeping again at all.
Twice a day I became exhausted and would “heavily rest” - but not sleep - for 1.5 hours. Otherwise I felt fine.
I went to the Mayo Clinic for 4 days in Jan 2017. The sleeping expert doctor opined that drugs could not help me any more. This time the Mayo doctors detected brain damage from my 4th head MRI.
SEVERE DIZZINESS JULY 2017
I felt fine until I experienced severe/crippling dizziness/disorientation in July 2017 and went to the hospital for five days.
I had yet another head MRI, which appeared “perfectly normal” to the hosptital neurorologist.
On Tuesday August 1, I began taking 3 prescription meds for sleep:
- doxepin 50mg
- mirtazapine/remeron 30mg
- nortryptaline100mg
These drugs restored normal sleeping for two weeks but ceased working.
The dizziness/disorientation dissapated 80% naturally. I felt basically OK despite the lack of sleep.
My neurologist (Dr. Bodner) ran many blood tests on me to investigate my condition but all came back negative.
RELAPSE NOV. 2017
In late Nov 2017, my condition drastically deteriorated overnight, perhaps due to long-term sleep deprivation.
The severe/cripping dizziness/imbalance/inabilty to coordinate body movements returned in full force. It is traumatically difficult to “walk” with the walker. It is difficult to place one foot in front of the other, I “lurch” from side-to-side violently, and my head “spins” disturbingly.
For the first time, I have constant extreme mental exhaustion/delirious sleepiness. I must lie down in the bed several times a day for “heavy rests” that last 1.5-3 hours. This cycle lasts 24 hours a day, day/night. I feel traumatically brain-damaged.
BELSOMRA
My neurologist in Jan 2018 prescribed the new drug Belsomra, which occasionally actually puts me into an unconscious state for 3-4 hours, no more. It too has basically stopped working; it only makes me sleepy but does not render me unconscious/asleep.
merck.com/product/usa/pi_cir … mra_pi.pdf
MERCK SETTLES 526 FINASTERIDE/PROPECIA LAWSUITS
In April 2018, Merck agreed to settle 526 Fin lawsuits for $4.5 million, approximately $9K per victim.
My case is too complex and atypical to litigate!
