Pretty sure I have PN

[finallyhere]

Sorry it has taken a few days to respond, I've had a few dr appts and it's also been a bad few days on top of it. Violet I've read that some people have PN from endometriosis also, I'm wondering if that could be my case. I would rather have that as the culprit I think then another serious problem, As the endometriosis seems to be easier to be fixed. My GYN doesn't seem to have a clue about anything nerve related. I'm not sure if he doesnt know or honestly just doesn't care, he seems not too interested. I'm gonna go ahead with th Lupron shot anyway I think. I saw my regular dr on Thursday( nurse prac), and she even asked me about a hysterectomy. She was surprised that my GYN hasn't asked me any of this, for just being a nurse prac in a regular internal medicine office, her and I talked alot more about gyn stuff than my actual gyn dr! She prescribed me pain meeds, and started me on Neurontin in case it is nerve related. Thanks to someone on this site I'm seeing a different gyn on Thursday, he has helped her and I'm told he'll really try to help and look at things from all angles. I have to pay out of pocket to see him but I think it's worth it, and I'm actually looking forward to my appt!

I am pretty worried about the Neurontin, I'm only on a dose of 300 mg, and last night took a dose of just 100 to start. Tomorrow I'll take 200. I'm just terrified of the side effects, last night on just 100 mg I felt pretty woozy and all I had to do was go to bed. I can't imagine taking this med 3x a day and having to actually function, hoping I build up a fast tolerance to it. ???

Hermajesty- thank you so much for the link to the site on the Tarlov cysts and also the Johns Hopkins info. My neurosurgeon did give me one number of a doc who specializes in them, as they admittedly don't.That was the main reason the secretary was trying to push me out of my appt, because "everything looked fine, I didn't need surgery and he wouldn't be the one to do it anyway". After she made it seem like I was a surgery addict. My husband came with me to that appt and definitely complained afterwards about her. I called the officeThey reccomended, and he charges $595!! Doesn't even accept ANY insurance. Do you guys find that this is the rule more than the exception? I've never come across this so much in my life until I started having these problems. It makes me so angry that these doctors charge basically

whatever they want, just because they can since they have found their little niche of people who are


suffering enough to pay it. Hopefully I can get some help from this new GYN before I have to see someone at Johns Hopkins.

[janetm2]

The neurontin takes some getting use to. Even with a gradual increase the effects can be trying. If it seems too much call the doctor for guidance and stay at that level until you adjust. Overall there were still some minor memory "couldn't think of a word now amd then" issues and attention to detail now and then had some typing number issues but those are gone since I got off the medicine.
Janet

[HerMajesty]

There are a couple of pelvic pain surgeons who are cash only but it is not a general rule. I am assuming from your account and location you are talking about Dr. Dellon, and IMO you should thank God that you were put off by the price, because IMO the man is a scam artist and a butcher. Personal theory: he is cash-only because he knows he can get rich exploiting desperate patients, and his work will not stand up to the scrutiny of insurance review. This is not true of ALL cash practitioners; the fact is, because these are rare disorders sometimes insurance companies give the practitioners so much trouble, so many denials, and so little reimbursement vs. the expense of doing cutting-edge work, their only option becomes cash. But that's not the category Dellon falls into, and IMO you were saved by your lack of funds. Search his name in the search box on upper right if you are curious why I am so disparaging...and I recommend you search the name of ANY of the specialists before seeing them. There are few enough that most have been discussed on the board and you can get a decent preview of what to expect.

I am on 2400mg of neurontin (600mg 4 times daily), and yes I did build up a tolerance to the side effects and was able to slowly build the dose, but neurontin does not work out for everyone. Give it some time and don't up the dose unless you start feeling normal on the dose you are on (well, almost normal, no wooziness, but the entire time you are on it you can expect to have a worse short term memory). If you can't tolerate neurontin enough to build up to a therapeutic dose, then there are lots of other meds to try. In fact while doctors often say "neurontin and lyrica are the same except you only take Lyrica once per day", my observation of other patients who use the board has been, some people can tolerate one but not the other. So I think if the neurontin treats you badly, you should try Lyrica - and if that treats you badly too unfortunately you will have to give up on that category of meds and try another.

[finallyhere]

Well I've gone up to 200mg of Neurontin, and seem to be tolerating it better. I'm still gonna wait a few days before I go up to the 300mg. I'm not sure if it's helping though, I don't think it really is and I'm not sure if it takes awhile to get into your system like an antidepressant or if it's something that you get relief from right away.

I wasn't talking about DrDellon, but thank you for the info on him!! I read about him on the threads here, and I've seen some of the stuff he talks about on the Internet. He did seem to very knowledgable in one article I read, it's really sad that people go to him though from what I've read here. I agree with what you said. He would never be an option for me unfortunately even if he was great, I would never have the money! I was thinking of Dr Marvel here in Annapolis, he is about 10 minutes away from me. Im hoping that this new gyn on Thursday can help me, so the need for one of these doctors goes away.

Last night I was up until after 4am. It seems worse at night, the pain and having the urge to pee. I have to tell myself that I just went to the bathroom and I don't need to go, even though it really feels like it!! I'm not sure if everything is worse because I'm laying there thinking about it. Certain pains only come when I'm trying to go to sleep. I'm dreading now going to bed every night.

[HerMajesty]

I didn't know Dr. Marvel was cash only; I personally have not heard anything negative about him (no rave reviews either, honestly haven't heard that much).

The neurontin works pretty much right away but usually not at all at such a low dose. you will have to slowly build to a much higher dose if your body lets you, to see if it will be helpful.

PT helped me more with my bladder than any other one of my symptoms. Trigger point massage, stretching, and lower abdominal excercises really reduced neurogenic bladder spasms. the bladder sensations are either caused by neurogenic bladder, or if accompanied by pain maybe by interstitial cystitis which can also be neurogenic in origin. Either way, in addition to PT drink TONS of water and hold it as long as you can, which should help significantly. When you dribble out of an empty bladder it induces more spasms. When your bladder is actually full and stretched, and you pee with a strong stream, it calms the spasms down. Little trick i learned now that I have had chronic bladder disease for 28 years...so i know what i am talkin' about

[finallyhere]

Thanks hermajesty. I did have a cystoscopy and everything was normal, no interstitial cystitis anyway. The urologist said I had a normal healthy young bladder. Before the cystoscopy she diagnosed me with urethritis, and I took vesicare which I couldn't tolerate. It made me feel really lightheaded and almost dizzy. I winder if the nerves just trigger the sensation that I have to pee? Some days it doesn't bother me at all and other times it's much worse.
I think Dr Marvel does take insurance, unfortunately just not mine. It would be great if he did, but I'm finding out I do not have good luck with this.

[Violet M]

Last night I was up until after 4am. It seems worse at night, the pain and having the urge to pee. I have to tell myself that I just went to the bathroom and I don't need to go, even though it really feels like it!! I'm not sure if everything is worse because I'm laying there thinking about it. Certain pains only come when I'm trying to go to sleep. I'm dreading now going to bed every night.

I had the same problem with urinary symptoms before my PNE surgery and I know what you mean about the symptoms being worse at night when there aren't any distraction to keep your mind off it. Tricyclic antidepressants or SSRI antidepressants can help the urinary symptoms a lot but it's a matter of trial and error to see whether they work for you. Muscle relaxants or benzodiazepines can also help with sleep. For me a combo of lexapro and clonazepam worked the best.

Violet

[helenlegs 11]

Hello Finallyhere and GeorgeT, welcome from me too.
As usual great advice has already been given, I would never have thought about arachnoiditis Violet but definitely worth exploring.

I am numb too George. Mine is only 2/3rds of my bum and doesn't reach up to my waist, (it's all at the back btw, my front has feeling although all of 'saddle area' is numb to)) The numb bum is due to cluneal nerve entrapment, in my case at piriformis level and just the inferior and mid cluneal nerves are involved for me, if the superior cluneal nerve was involved I would also be numb further up. Is your numbness front and back?
My numbness is greater and very dense at the back of my thigh which is due to the post femoral cutaneous nerve (PCFN) and also some of my lower leg is numb (this bit doesn't bother me) but I also have densely numb heels which are very troublesome. The soles of my feet are numb too, obviously this is due to the sciatic nerve.
I have pain lower down than the 'numb bum' area, but it is all due to entrapment higher up, along the path of the nerves involved as the pain 'radiates' along the nerve and areas affected by that nerve. Just saying this as that I would n't rule the cysts out altogether, or other sacral pathologies even though you do have numbness there.
Your case is complicated because of your spinal problem of course.
Good luck with the new gyn finally it is SO difficult finding some medic who does understand, the nurse sounds wonderful.(AT Last! SOMEONE WHO GET'S IT!)
Take care,
Helen