Chronic illness? Just until they find the cure!

[april ryan]

hi there,

I haven't actually been diagnosised yet (cystoscopy in 2 weeks), but my urologist is pretty sure that I have IC.

I did some research based on what my doctor said: "No it's not a chronic illness, we will cure it! I've had many patients like you, and now they are all well!"

Well obviously it's hard to believe when you are sick, but I want to be optimist!

He proposed me some instillations of Hyaluronic Acid ( I think it's not available in USA yet, I'm not sure)

So I have read linked from this website the articule about Hyaluronic Acid/Chondroitin Sulfate instillations (instead than simple Hyaluronic Acid).
Because the doctor who wrote it is Italian (I'm italian too) I felt more confident to send him an email asking for info; he kindly replied attaching the whole articule! He says that it seems that this formulation is even better (will be available in Italy at the end of the year), and that there has never been a bad reaction to Hyaluronic Acid or the combination Hyaluronic Acid/Chondroitin Sulfate .... He also said that I shouldn't worry because there are good treatments at the moment, and the definitive solution might be very near.. good news I guess!

I am not sure which exactly my doctor wants to give me, but now I am more prepared on the subject and I can ask him in our next visit.

I will certainly keep you informed. if you have any experience or any thought, please share it with me.

Hugs
xx
April

[ICNDonna]

Thanks for sharing information. I'm hoping the cure will be available soon!

Donna

[jen74]

A cure would be great, or even just something that would give relief. As far as the cure goes, I guess they would have to find out what caused it in the first place and fix that in order to get a real cure though.
Jen

[april ryan]

i agree with that..

My uro seems convinced with the neurological theory... lining gets damaged for some event or bacteria attack... nerves are exposed and reacts too much and release nasty chemicals that don't allow the nice coating to heal..

It makes sense to me, but I'm not an expert!

It can be the same with IBS.. but if it is like that...how do you solve such a difficult problem?


:)

[NewLife]

Thanks so much for sharing this information! I did some research on HA and found that it is available as an oral OTC supplement, but too much of it in the body has been linked to cancer. Then I found that magnesium helps the body produce HA - http://www.ctds.info/magnesium.html , so I decided to take magnesium to regulate my body's HA production without putting too much HA into my system. Thanks again for this info!

[InpainwithIC]

the brand name is cystistat, it is a common therapy for IC in the UK - the equivalent in the US is heparin....

[april ryan]

I believe they have not the same composition, cystistat is only hyaluronic acid:

http://www.ic-network.com/handbook/instill.html#Cystistat

A new mix is being released in europe soon, see my previous post.

April

[ethnograph]

Although it is not approved in the US yet, the FDA lets us import it from Canada with their approval. I buy it (my Dr. rx's it - you have to have an rx) from the manufacturer in Canada to use for instills. It's early days to know yet whether or not it is working. Supposed to do a once a week for 4 months, then once a month then as needed. Some patients have gotten down to once every year or two. Cystitat is the #1 choice of treatment in Canada and the European Union. In Studies its success rate is slightly higher than Elmirom.

[Taramc]

Calcium Magnesium supplements have helped the neuralgia that came with my Interstitial Cystitis, which was originally caused by a strange viral or fungal infection.

I'm also told Omega 3 fatty acids help the nervous system, but my bladder will not tolerate Fishoil Capsules for whatever reason. Lots of people can tolerate them, though!

ALSO, my urologist cannot make sense of my neurological symptoms and how they relate to my bladder. When I'm flaring, my arms and legs are twitching and burning. So's my back, my fingers, even spots on my head.

SO if ANYONE OUT THERE has run into ANY ARTICLES about NEUROLOGICAL symptoms with IC, I really need to find them. Please link to me!!!! I can bring with me to next visit in 4 weeks.

[monica78]

I have alot of problems with my muscles when I am in a flare like right now. My chiropractor says that everything is connected with nerves from the spine to every part of the body. She says it makes sense why I have hip pain and
leg pain when my bladder is acting up. Wouldn't a cure be like manna from above? Cant even imagine it.
Keep us informed about it and i wish you luck.

[Taramc]

Yeah I got stabbing, unrelenting back pain 3 weeks after exposure to the infection that did this to me. It was worse on the weekends and took me a month to figure out it was from beer. The FULL onset of diet sensitivity for me started at about 8 weeks.

Now, whenever I eat something wrong, I get the stabbing in the middle of my back on either side of my spine, stabbing on the insides of my knees and either side of my calves. Stabbing on the backs of my arms and through the insides of my elbows. Horrible burning pain in my fingers and sometimes toes. Numbness, and twitching nerves. I went through a 'phase' of ongoing nerve twitches from 10 months to 15 months after exposure to the infection. My hands and feet fall asleep often.

Here's how my neurologist explained it, quite simply: "The infection got into the dorsal gangleon." Apparently that's in the spine.

[monica78]

that does make sense. How do you know if you have the pelvic floor issues too? I wonder alot if i do but i haven't researched it enough to know.

[Taramc]

The nerves in my crotch have been terrible at times! Passing sharp, stabbing pains around either side and even INside. But I assume it's all Neuralgia of some sort...not the Pelvic Floor Dysfunction.

The drug "Lyrica" saved me from about 60-percent of the pains, which had reached an unbearable maximum at about 8-10 months. I'm at about 19 months now, and with my bladder now tolerating Calcium/Magnesium my nerve pains are under control:woohoo:

[Snuph]

I live in Canada, I would disagree that it is the number 1. As a matter of fact of the people that I have met with IC I am the only one that has tried or was recommended cystistat. I had no improvement. Also In Canada, it is not considered a drug but a medical device which means that approval by the Health Canada was done by the manufacturer sending in its own research data. I think it is interesting that on their cystistat website, they cite research statistics for bacterial and radiation cystitis but not interstitial cystitis.




Although it is not approved in the US yet, the FDA lets us import it from Canada with their approval. I buy it (my Dr. rx's it - you have to have an rx) from the manufacturer in Canada to use for instills. It's early days to know yet whether or not it is working. Supposed to do a once a week for 4 months, then once a month then as needed. Some patients have gotten down to once every year or two. Cystitat is the #1 choice of treatment in Canada and the European Union. In Studies its success rate is slightly higher than Elmirom.