Hope everyone is doing well.

[ngazerro]

The board has been so quite with dextro users. How is everyone. I am still doing great since I got over the bladder infection. I have to admit, I have been really busy and have not been on the board lately. Hopefully that is the case with everyone.

Nina

[camackin]

Hi N,

I am okay, haven't been on the site in a while. Still taking 15 mg of Dex, which has still definitely improved the pain and made me able to do small errands and things during the day, but not quite ready to go back to work. I've sort of been in emotional hell the last 4 months. I found out my husband of almost exactly one year has cheating on me with 2 different girls this summer and continues to see the second one even now although each time he is caught he swears up and down he'll do "whatever it takes to make things right again", "it was a mistake", and pleads with me not to leave him. what the? how did my life suddenly become a bad tv movie? I've moved out and i'm living with my mom now. I hope once the emotional stress of the separation and divorce is over that I will start to feel much better physically as well. I'm also thinking of upping my Dex dose slightly and see if it helps more.

Hope you are still continuing to do so well!

C

[ngazerro]

camackin,

I am so sorry to hear about what you are going through with your husband. It makes it so much worse when you don't feel well. I hope you have someone you can talk with about it. my thoughts and prayers are with you!

I have been doing great with my bladder. I was just dxed last week with Sceloderma so I have been dealing with that. We are trying to find a treatment path that we are going to take.

Hope things get better!
Nina

[justice4j]

Nina, I'm so sorry about your newest DX. You will perserve and find a treatment. I know you too well and I know you won't give up until you and your doctor can treat/beat this beast.

Doing well on Dex except for the bills.....to $$$$ psychiatrist and now am at war with a hospital that has less compassion than banks.

157 pages of PREPONDERANCE of evidence of financial need for assistance with viral lab panel bill of $910.66.

Patient Liason people very nice, bean counters in Patient Financial Services are rude, lacking in compassion and insulting as well.

I'm used to fighting for what I need.....asking my friends in healthcare reform to help with possible PRESS. They're working on it.

I would love to STAND in front of that south Orange Count CA hospital that is across the street from a shopping center of finest department stores with a reporter interviewing me. It may happen.

I'm a complete bull dog with her teeth sunk into a very large bone over this kind of nonsense with broken health care.

:cussing::rant::mad::bonk: Anyone who wants more info, pls. PM me and I will give you my private email to speak with you there.

[justice4j]

Awaiting return of LA Times reporter 10.01.08 to relate this to her. She's asked me to do a story on my case; can't as it isn't to the point where I can speak about it yet, per attorneys.

I think she just might be interested in this lab bill situation.:evilsmile:evilsmile

[justice4j]

MG,
You really are MOTHER GOOSE! I even told the financial services people not to call until Fri. that I need a break from the whole matter.

I got to play keyboards with my boyfriend Brian on bass the last 2 nights and that is the best therapy there. There's nothing I love better.

You know what, my father and I have had a difficult relationship most of my life. He gave me the priceless gift of a letter of complete apology - very much what I had waited to hear since 27 years ago. But, it threw me for a loop -totally unexpected. So....began getting trigger points back in my upper back AS I read the wonderful letter. I hadn't had that problem for a couple of years, but used to.

Then....the lfinancial services people/ lab war....I haven't have the time or correct frame of mind to take care of writing him back ....my mother told him that I appreciated the letter and that of course I forgave him. Problem is, humans can't forget some things. I still forgive him, but it stirred up memories......

I want to do the letter ASAP.....

So, I have to do something about these trigger points...my boyfriend fortunately can be my home chiro - I know- everyone will gasp, but he's just as good as any chiro I've had adjust my upper back.

Trying not to let it get me ill - and aside from the trigger points, it hasn't seemed to affect me - but would have if I hadn't gotten an RX for Dex. I do have to reduce the dose a little if there's a fire I'm putting out.

But, your words are sage and I will keep them in mind and thank you from my heart.

[justice4j]

My dad's hearing is so bad, that he can't hear on the phone even with a state issued phone for those with hearing problems....so I couldn't even call him.

But that letter is on my mind....I hate that I had to postpone writing it due tot the FS idiots. They had the nerve to tell me I was "barely over the income limit". Then, they refused to let me know by how much.

First they refused to send me my papers =157 pages back, then one of the women who is very nice in FS told me she would send them back. I have every original, I just don't remember what I actually sent b/c I had papers in piles all over the floor trying to decide what exactly to send, then put them back in a folder.....their excuse was dk said - "I can't send them back" JS"Why" DK"Because they have writing all over them." AHA ....trying to hide evidence I need....

The woman who is so kind in FS is going to bat for me and I think she will try as hard as she can. Her name is Star, and she really should be named:angel:
She was so patient and kind.

[ngazerro]

Janet,

Thanks, I am looking at the stem cell transplant. I am sorry to hear you are going through so much. hopefully it will get better.

Mothergooge,

I am glad to hear that the dextro is doing well for you. It has been a life saver with my bladder.

camackin,

Hope you are feeling better!

hugs
Nina

[justice4j]

Hi,
I'm continuing to do well with Dextrostat - except that I forget to eat and have now lowered my dose. I don't want or need any more rapid weight loss.

My symptoms are still improving---not perfect yet, but much better than before.

Hope everyone else is doingwell.

[Melanie R]

I have been doing well except getting to comfortable and eating so wrong! I ate so many no no's this week and am in a huge flare. Plus, I have been doing a lot of physical activity. I get over confident that the dex will take care of everything and try to forget i have IC. I have to be realistic and remember that the dex is only helpful if I do the other things I'm supposed to do to keep myself feeling well!!!

[justice4j]

Dex is still working well for me, I've lost a lot of unwanted weight and I'm lucky, I can eat and drink most of what I want. I don't drink alcohol anyway - uninhibited enough w/o it LOL. People at parties don't know I haven't had any alcohol.:smile tee

I had a minor flare from Miso soup with exactly 1 tiny piece of tofu. Go figure.....it was really almost nothing.

It is nice to have the energy from Dex. But, some days I take a break from it....I slept about 10 hours yesterday. I have been taking Librax sometimes at night for IBS.

Dex and Valium 20 mg. topically are really helping. I think the Valium is having a long term effect - I am not having to take it every night.

I still have some PFD pain and frequency with IBS - the Dex does seem to aggravate that a bit, but it is still way worth it.

I wish the doctors would let more patients try Dex and topical Valium. Those are 2 magic bullets or nearly magic bullets for me.

[Eleonor]

Hello! I'm a patient suffering from IC and IBS for 7 years, I am 28 years old, with very severe pain from IC! Do you think dex could possibly help me? :help:

My painspecialst tell me I have neuropathic pain, central senzitization and that nothing can help me with this pain. I am suffering alot from the pain, not being able to work, get out of the house, se friends or family, almost always at bedrest. It's not a life and I can't learn to live with this pain. Norspan (ibuprofen) pain patches is the only thing that helped med, but only for a while, then it wore of, though I'm still on them. I live in Sweden, Northen Europe. I have tried everything, every natural remedy and all medications available. I have severe frequensey and urgency but the extreme pain is the IC for me. My docotr says removing the bladder won-t get rid of the pain.

Do you think it could be an option for me? So thankful for any replays, any thughts at all!! I would be so greatful!!:cat::help:

[formom]

Soo sorry you are feeling this way Eleonor. Please hang in there, I am sure one of these gals will chime in and give you great advise. Sorry, I do not have experience taking this, but wanted you to know we are here for you.

[Eleonor]

Thank you so much for your reply! For taking time to write to me even though you don't take Dex and giving me strength! I hope you will have a really great day! Thank you again! Hugs from Eleonor in Sweden.:hi::flower::cat:

[justice4j]

If you can find someone to Rx it for you, it's worth trying....it's a very inempensive but highly addictive drug....but with the right patient who has no chemical addiction tendencies, like Mothergoose said, it can relieve many symptoms.

Good luck and Hugs,

[ngazerro]

Eleonor,

I have been on the dex for about 10 or 11 months. I have done really well on it. I take 5mg twice a day. Sometimes I just take 5mgs a day. In the ten months I have not had to raise my dose and it has help me so much. I have not had any problems for a while. Sorry my response was slow, I have not been on the board for a while. I would talk to your doctor about it to see if it helps.

Hugs Nina :smile tee

[justice4j]

I've been on Dex since July 17th. and I recommend anyone who feels it might help should try it!

[OrlandoP]

Please excuse me, I know this has been answered before.

I could not get my pain clinic in NY to prescribe Dex. No way. They wouldn't try LDN, which kind of ticked me off. I am a square peg, I need a smart doctor who will experiment with treatments. I've tried all the normal ones, they don't work. What kind of doc prescribes Dex? I have an annual with a GP in November, and I'd like (to try, you know how hard it is!) to drive the conversation and not leave as I usually do: pushed out after 10 minutes, practically despairing at not having any of my questions answered.

[justice4j]

Orlando,
The only way I got my Rx for Dex was through a psychiatrist. They routinely Rx it for ADD, Narcolepsy, and some even to counteract the sedative effects of pain medication.

If you can tolerate the aggravation of parking, waiting for appointments, etc., try your local university clinic.

Most psychiatrist require an hour long first appointment to take history, etc. After that, you're seen for a "med check" appointment which is sometimes as short as 15 minutes or as long as 30 minutes. As they get to know you, they spread the appointment times out longer.

Hope that helps.

[formom]

Hi. Can you please tell me what symptoms this med actually helps? Do you still have to watch everything you eat etc...? Why do some docs not want to prescribe it to anyone if it will help? Sorry soo many questions, but just really like to get as much info as I can for future help. Thanks in advance:):)

[justice4j]

I have less frequency and pain from IC now that I'm taking Dextrostat (generic for dextroamphetamine sulfate).

I am having more pain from PFD lately, but I attribute that to the physical and emotional stress of sifting through mounds of EOBs, credit card statements, pharmacy bills etc. Much of this involves sitting on the floor abd sorting things into piles. Some of my older info is in metal file cabinets in my garage. The guy who owned the house before I did CARPETED the garage and made it into a family room.

I also have been "on my feet" too much the last few days. Lots of errands....I cleaned out half my garage. It feels so good to have energy to do these things, but sometimes I overdo...

Try Dextro if you can.

It's a Schedule 2 drug that is reported to the DEA via computer. It's considered very addictive and doctors other than psychiatrists - used to Rxing it for ADD and Narcolepsy- are more at ease with the drug and its administration.

Look at my post to Orlando and do a search of my posts. I think many of your questions will be answered.

[justice4j]

Well....somethings still bother me diet wise. I'm sensitive to blueberries more than strawberries-which I tolerate well, can drink coffee with Prelief, most iced teas are okay. Except, I had Peach tea at Marie Callenders - it was delicious, but I forgot to ask about artificial sweeteners.....UGH.....aspartame.....12 hours of frequency. Also, Red Robin's sweetened, flavored iced tea - I think raspberry?? had corn syrup, the waiter told me every single ingredient and it shouldn't have bothered me, but it did. It is probably some preservative.

I can't eat "cheap" deli meats again, I think it's preservatives. I eat tomatoes and drink coffee more than I probably should.....I am a complete brat about diet.....

[Eleonor]

Hell again! Thank you all of you who answered my question about dex and shared your experiences!! I'm so grateful! I've been soooo ill witg pain, that I haven't been able to respond until now, so sorry! I will ask my doctor to try this and if I'll get to try it I will post how I'm doing here, promise. Thank you all again!!!:angel::cat:

[justice4j]

My experience has been very good with Dex. It has made life bearable with IC and finally today is relieving some PFD symptoms, but I do use the Dr. Brookoff Valium tabs in the "front door" at night. I'm hoping the Valium, over time will break the internal trigger points cause I cannot afford $80 X2 per week cash for a specialized PT listed on this site. She's good but the money......first appointment was $130.00

Look to a psychiatrist for the RX. It took me 4-6 weeks to have the pills in hand. I started to improve in about 48 hours.

[camackin]

hey all,

I hope you are doing well. i'm still on dex. it's making me loose a lot of weight. I've lost about 15 pounds in 5 months, right now i'm 5'3" and 113 lbs so not sure how much more i can lose. it just makes me feel nauseaus sometimes, but more it makes me not like the taste of food in my mouth. so i try to eat tons when i feel hungry or when i can stomach it. if i loose much more i'm not sure what will be worse, dex or no dex. i am going to probably reduce my dose a little and see if that helps.

my symptoms are still the same since i first started the dex. it's helped a bit with the pain and i have more energy, but i still feel disabled by pain and fatigue. i'm still off work. i've had a tough and stressful time personally lately, but i think that time is coming to a close. i hope when i start to feel much better emotionally i will also start to feel better physically.

love to you all

[some_guy]

I am going to try the Dex again. The first time I tried it I did have some encouraging initial improvement but I gave up on it to quickly. At the time I was still hell bent on denying I had IC despite the bladder picture that looked like a red sun. I had it firmly in my head that my problems were all hernia related and went to several docs until I found one who would agree. So I don't think I gave Dex a fair trial because I was in such denial about IC that of course Dex could not work and as soon as I found surgeon willing to take my money I dropped it like a hot potato.

Now I have to figure out how to ask my doctor to try it again. I already fear she is getting weary of prescribing pain medication, not because I have done anything wrong but because of the hassle, paperwork etc. This doctor has known me for a long time and knows what this has done to me so maybe it is all in my head to worry and I should just ask.

I guess I'll make an appointment and bring some more print outs from here and see what she says. I think it is worth another try,

[ngazerro]

Hi,

I have ben doing great on it! I have been on it for about two years and have not had hardly any bladder problems. I have never had to incease my dose. i still take 5mg twice a day. I take no other meds for my bladder.

Good Luck
Nina