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I feel hopeless right now.

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  • L. Thomas
    replied
    I would certainly get a second opinion from an IC expert. My urogynecologist told me at the very beginning that there were lots of "tricks in his bag" to treat IC.

    You didn't say what speciality your MD is. One thing to consider is how many cases of IC he treats. Bladder removal is an extreme treatment.

    I know you have mentioned MS. I am sure there are others here that have MS. Why don't you post on some other forums here and see if you can find support from MS ICers?

    Leave a comment:


  • jazzgirl
    replied
    Oh Mortisha I forgot...Yes, I agree how do we know if it is the MS or IC. Sometimes by the time my brain gets the message I have to go it is almost too late and sometimes it just goes whether I am ready or not. I always blamed it on the MS but maybe not. It could be a combination of both.
    take care!

    Leave a comment:


  • jazzgirl
    replied
    Mortisha,

    I know that is how I felt when I saw someone with MS and IC. I am still kind of in shock that I have this to cope with also. I do have a lot of deep pain. It is hard to explain. It is unbearable at times and feels like it is down to my bones especially in my arms. I take Lortab for it and now for my bladder pain and pressure. After having solumedrol infusions a few months ago it seems to not be so bad. I had whooping cough and then went into an exacerbation. I was just getting over the exacerbation when the IC symptoms appeared. I was on Avonex a year ago and had an allergic reaction both pysically and pyschologically. It nearly killed me. It took six months to get over. I only did 4 injections. I also had a severe reaction to Copaxone 2 years ago. I do take Baclofen for my legs and that is all I take for the MS. Oh, I do have to take Ambien to sleep. I have been on Elmiron for 2 weeks now. I can not tolerate one in the morning it makes me so sick and drugged. My urologist said I was having a weird CNS reaction to it so we backed off and just did 2 a day for a week. I am trying to add another one the last few days but I just don't think I can take 3 a day. It is a challenge for sure to cope with both MS and IC. I have quit working and pretty much given up on a social life. All my family lives out of state. I try make the best of the place I am at each day but somedays it is an hour at a time. I so understand.
    I hope I haven't went on too much. I hope you are able to get another opinion about your bladder removal. I can't imagine.
    You take care and have a good week!

    Leave a comment:


  • mortisha
    replied
    To JazzGirl and Sandy...

    The post about MS was for you Jazz Girl. Sandy, thanks for your message. I'm going to ask my urologistabout rescue instillations when I see him next. If it gives me relief I'm all for it. I'm already doing self-cath when I have to, so it couldn't be too hard to do an instillation. The pain med thing makes me crazy. I can't take Compazine, Phenergan and Reglan because I get nasty CNS side effects. I wonder if my Doc would give oral Demerol? I know it's an old drug, but when I had my colon removed back in the 70's it was the only thing they could give me.

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  • mortisha
    replied
    Oooo-it's so nice to find someone out there with both MS and IC! We need to talk. I have so many confusing things going on with my bladder and urination (not being able to go and leaking) and I don't know if it's due to the MS or IC or both? Do you have issues like this?

    Also, one of my greatest MS problems is bone deep fatigue. Before the IC diagnosis I drank coffee just to function. Now of course I can't and there are days that I get up in the morning, eat my cereal and go right back to bed. Trying have any social life or even go anywhere is pretty impossible. My doc prescribed Provigil but I think that makes my bladder problems worse. Any experience with this?

    Tell me more about your MS and meds you're on. I'm on Lexepro, Zanaflex, Tegretol, Copaxone, Elmiron, Klonopin (at night), and Trimpex.

    Leave a comment:


  • SandyRN
    replied
    Your post just broke my heart. I have many diagnoses as well and it's very hard to cope some days. I agree with everyone that you have not nearly covered all your options for treatment of the IC. Please get a second opinion, preferably by a doctor who actually knows how to treat the IC.

    I have Crohn's and know what it's like to live with a painful bowel disease, but I've never gotten so bad that I needed surgery. You definately have my empathy and my sympathy.

    Please read, read, and read some more...there is just so much help out there for all of us. Sometimes it just takes a while to find it. There are good, educated uro's who know how to deal with IC. I don't know where you live, but if travel is an option, there is a great doctor here in North Carolina that can give you a lot of hope. His name is Dr. Robert Evans.

    Never feel bad about venting....we all have to do it. You certainly have your plate full and I think that you must be a very strong woman to have made it this far!

    I wanted to address the vomiting with the pain meds....I take phenergan and sometimes reglan for nausea. It helps make the pain meds work more efficiently as well. Ask for one of these meds to take with your pain meds, and it might give you some sembalance of a life back. I can only imagine the pain that MS causes, and having IC on top of that must be literally devastatingly painful. Please look into these meds as they have helped to give me my life back, or at least a portion of my life back.

    Never give up, come here when you have questions or need support...this is a great group of people here that have so much compassion...I don't know how I would have gotten through some of the hardest days without this board.

    Take care and let us know how you're doing.

    Hugs, Sandy

    Leave a comment:


  • jazzgirl
    replied
    Hi Mortisha,

    I also have MS and was diagnosed with IC two weeks ago. I understand everything you are saying. It is overwhelming for sure. I have had a really rough two years with the MS and was just starting to feel like I had my life back when all this IC stuff started. I had a cystocopy and hydrodistention two weeks ago and the nurse at the surgical center told me she has seen quite a few MS patients with IC. I am curious if anyone out there has heard of many MS patients with IC. When I read your post I sure understood what you were saying. Hang in there. I hope you are feeling better.
    Take care!

    Leave a comment:


  • Kara29
    replied
    Bladder Removal for someone that has just been diagnosed seems odd. If you go to the main boards you can see what other treatments there are for IC. Maybe you can talk to your doctor about some of them. You could also get a 2nd Opinion. It requires finding the right clinician (IC Specialist) who will be patient enough and knowledgeable enough to spend the time it may take to get to the root of the problem, and offer the intervention that will work best to give you some relief of your symptoms.

    Kara

    Leave a comment:


  • wolfaleena
    replied
    hi mortisha:
    Never feel like you are alone in all of this!
    I am glad you have a forum to let you thoughts and feelings out.
    You are certainly welcome to do so at ANY time~~~
    There are a lot of things to try.
    I have had IC for over 15-20 years. i have tried and done just about everything ....except the bladder removal and urinary diversion.
    You can private message me anytime... to ask about other treatments or things that i have tried.
    We all react differently. and a lot of us have multiple problems.
    I also feel that way sometimes that my husband doesn't deserve all of MY health problems.... but remember...... marriage is for better or for worse....in sickness and in health~!~~~~~
    I have a lot of health issues as well..... again please feel free to private message me at any time.....

    Leave a comment:


  • Roxie2007
    replied
    Hi Mortisha,
    Sounds like a day or two or three is just what you need! We all need to do that once in a while! I hope you get to feeling better! Roxie

    Leave a comment:


  • mortisha
    replied
    Thanks to all

    Thanks to everyone. I guess I'm just overwhelmed and tired with
    all this. The MS is acting up now and I'm ready to just take a "sick day (or two)" and quit fighting everything for a while. My husband works out of town during the week so I'm thinking a day or two in bed doing nothing may be in order. Again thanks for listening.

    Leave a comment:


  • Roxie2007
    replied
    HI Mortisha,
    Welcome! I'm SO sorry you are having to go thru so much pain. It really sux to have IC and other health issues too.....believe me I know!!
    I agree with the other gals....might be time to try a new dr. get another opinion. Life's too short to be in pain. I just posted on here that I've had one h*** of a time the past 24 hrs because my medication isn't helping much. I'm going to try hypnosis and massage therapy next week....alternative medicine.
    I hope you find something to help you. Tiggergal listed lots of great IC meds you might ask your dr. about....lots of things to try before bladder removal. It sounds like your dr. is overwhelmed with your symptoms and doesn't know any other route to go....and there's many other routes to go. Find yourself good IC dr., quickly! Hugs! Roxie

    Leave a comment:


  • SharonA
    replied
    Sending you (((hugs))) and a hardy

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  • VickiB
    replied
    Hi Mortisha,

    If anyone deserves a pass on ranting, you do! We all need to let off steam, and express our frustration from time to time! It seems you've had more than your share of health problems. IC alone is hard enough to deal with!

    I just wanted to agree with others by saying that I believe a second opinion, -even a third, is worthwhile before opting for removal. There are many things to try, if your other conditions will allow for them. Also that for me, it was a good 8 months of taking Elmiron before I realized my IC was way better than at the beginning.

    Welcome to the group!

    Vicki

    Leave a comment:


  • GoldSeals
    replied
    Originally posted by tigger_gal View Post
    lol goldseals.. don't post on meds is what I tell myself. we all have screwed up a post for doing that, nothing like giving yourself a good laugh the next day. I understood your post as you ment it to be. How much atra do you take at night? I take 75 mg.
    I just started taking it again so its only 25 mg for now.

    Leave a comment:

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