How long have you had this neuropathy? What is the cause?
8 weeks and counting. Started in fingers, spread up arms and legs. ED only for last 7 days. Still getting weak erections upon waking up. Night sweats. Waking up at night with numbness and paralysis of arms and fingers for several seconds. Calf and thigh aches when walking. Left limbs are worse. Positional sense of left leg seems off kilter. 28 days of pep meds taken - symptoms started 10 days into pep. Negative hiv test 8 weeks post high risk exposure. I suspect drug after effects of meds or cipd. What do you think? Referred to Neuro dept but I fear I'll have to wait weeks. Nhs
Yes, this certainly could be a drug reaction. CIDP would be less likely but a consideration. I think your symptoms warrant prompt evaluation by a doctor. It does not need to be a neurologist initially.
If it is a drug reaction you would likely need to stop the medication and be treated immediately, before symptoms worsen any further.
I finished the course of drugs nearly 5 weeks ago but symptoms have persisted and spread. could it still be the drugs? Seen a doctor who referred me to a neurologist but might have to wait weeks for a consultation. In a the meantime and could get irreversible damage and never get an erection ever again.
Blood tests ok apart from slightly high neutrophils and very slightly high red blood cells. No diabetes, thyroid ok etc
Any problems controlling your bowels or bladder?
No. They seem ok
You could be experiencing what is called transverse myelitis. Have you had a neurological exam?
Are you familiar with this?
It's important to know as you might need to be treated with anti-inflammatory corticosteroids.
No I haven't
Right thank you
I may have 'to wait weeks for a referral
Going private could bank rupt me. But a choice between bankruptcy and penile health....
Is an easy choice
Yes, indeed. :-)
You need to get a diagnosis first. Then your other doctors will know what to do.
One more thing. What tests are needed to confirm this diagnosis?
Blood tests are usually performed and an MRI to rule out a structural cause in the spine. Sometimes a spinal tap is also done to evaluate the cerebrospinal fluid.
Thank you, ***** *****
You're welcome. Hope all works out for the best for you.
Sorry Dr Bob. I know I'm milking this. But could aspirin have any benefit as an anti inflammatory, beyond relief of pain? (which I don't really have). It could be days if not weeks before I get treatment and I'm feeling pretty desperate.
Aspirin is a pretty good anti-inflammatory (as are ibuprofen and naproxen). These anti-inflammatories might help in mild cases.
Another option would be to go into the ER and appeal to the doctors there for more aggressive treatment of your symptoms. Getting a reasonable working diagnosis is the first order of business.
Thank you. I'm sorry this thread has gone on so long. I'm feeling as low as I've ever felt. I'm so frustrated that there are probably drugs out there that might slow or stop the symptoms but I might have to wait weeks to get them unless I somehow get thousands of pounds that I don't have. I went into ER (A&E in the UK) but because I have no respiratory, heart or other problems I'm not seen as an emergency case. Potentially losing the ability to get an erection for the rest of my life (if it's not already permanent) is not urgent enough, obviously. It might not kill me but it will end life as I know it.
Is there any scope for recovering erectile function if I nip this in the bud within a few days? (assuming there is a treatment that will work)). I'm still getting erections (albeit minor) upon waking and I had a proper erection only a week ago.
It's frustrating that every other function, if slightly impaired, is more or less OK - walking, swallowing, talking, urinating, etcv. The ONE function that seems unlikely to repair, the one that is fundamental to one's sense of self esteem and purpose, has malfunctioned not just slightly, but 100%
Depending somewhat on your age and overall state of health, of course, erectile function is very likely to return after post-allergic or post-infectious autoimmune neuropathy.
The effects are typically transient. Earlier treatment carries a better prognosis, most likely, but the studies are not definitive either way, and most recover.
In the meantime, keep in mind that anxiety itself can significantly impair erectile function and is probably a major factor in this. That will get better too. :-)
Thank you so much. I knew you wouldn't lie to me just to make me feel better. Everything I found online just sounded bleak. I was feeling pretty despairing but now I have some hope. Just have to find a way to get some treatment quickly that won't break the bank.
As much as I'd love to keep this chat going interminably it's not fair on you.
So I'll finally give you some top notch feedback. BTW, you seem to do some pretty long hours - answering my questions Saturday afternoons, Sunday afternoons, Sunday evenings. Hope you enjoy some downtime at some point!
Thanks again, much appreciated