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Hello :)
I don't post as much encouragement for others as I should but thought I would check in. I have been in treatment for 1.5 years. Overall my bladder/urethra symptoms are significantly better! I can go between 3-4 hours between using the restroom and sleep ok. Sex is doable and if I eat right I can continue on as normal (not the case 1.5 years ago). I have not been the perfect patient though. I struggle with wanting to eat way too many potato chips. It really is what is holding me back in treatment I believe. I try to only eat those cooked in avocado or olive oil but it is still excess carbs which I'm sure are not helping inflammation.
I just wanted to reach out because I feel like I haven't noticed much improvement in the last 6-8 months. I am still dealing with some odd symptoms - particularly facial tingliness and piercing head pains in a few specific spots on my head. I just tend to spiral with this that I might be deficient in B12 or having symptoms of MS. When I start doing this I think - why isn't my gut healed yet to prevent these crazy symptoms which leads to exploring other treatment options - wanting to go to a western dr. for blood work (but i dont want to deal with the actual dr). Sorry to ramble I think I just need to know how you all handle the anxiety of these weirdo symptoms and when do you look further into them and when do you wait to see if they pass. Dr. Brizman always tends to tell me to get things checked out opposed to it just being die-off so I never know. Sorry for the ramble. Hope everyone out there is feeling significantly better day by day!
I too so struggle on when I
I too so struggle on when I should actually go and see the Dr. It's kind of weird what craziness that I find acceptable and when I get panicked and decide that I just MUST have tests. There are times when I wonder if it could be MS - seems to be a pretty standard response around here. I figure that if I actually do have MS - when all the other people on this site never seem to have it - that it'll still be there in whatever time frame - there doesn't seem to be a cure for that one - maybe I'd really rather not know. I also managed to put up with extreme pain in my liver area for two months - could almost not walk. I never went to the Dr. for that one and luckily it went away before it killed me. HOWEVER, the crazy dark breast discharge sent me running in, as did all the black stuff in my stool. Everything all checked out OK. I too have had tingling in my face -numb spots here and there, and painful spots in my head - this one bothers me - but so far have held off on the brain scan that I know several others around here have had. I've never directly aske Matia if I should go to the Dr. - I imagine that she feels best to say yes when directly asked. However, I do ask her if this is something that she sees alot of in her practice. While I know that this doesn't mean that I don't have something horrible when no one else has - it does make things a little easier to ride out. Forgive the babble.
Take Care - not sure if any of this helps. Just know that we all "get it".
Hi ladies
Hi ladies
I do have MS.... I think I am her only patient with this wonderful combo! I have had it 15 years. Was diagnosed when I was 25. I can tell you that I have seen amazing changes in my MS symptoms... Not so much my bladder or pain. I have also been in treatment for 18 months. I also practice Quigong & have seen people heal from both conditions using this energy treatment along with Chinese medicine. I often want to blame everything on MS but more often than not it is die off. Dr B often tells me that imbalance is imbalance & what I am going through is one in the same. I will heal from both. Nothing is easy & everything takes a little to much time but we will all get there. Stay strong!
Amy
Hi Ladies, When I began my
Hi Ladies, When I began my latest round of die off/ all over body sickness right before the holidays, I was sure IC had morphed into something else involving my nervous system. The muscle burning, anxiety, strange weakness sensations etc were overwhelming and I came to the same conclusion Denise did- well, if I have it, then I do and honestly, I would not go about treatment differently even if I did so, I just put one foot in front of another. Many of these conditions- POTS ( which I did develop) IC, fibromyalgia, ms etc have many overlapping symptoms so who s to know where one ends and another begins? Chances are good you do not have another condition;)
Amy- I did not know you also have MS. Thank you for sharing. I am interested to hear what your symptoms were like when you were diagnosed and does it feel different from what you are going through with your IC? So happy to hear your symptoms are better!
Denise- How have you been feeling lately? I am finally starting to see some light at the end of this round of die off craziness - I think- I better find some wood to knock on;)
Katie
Everyone has had such helpful
Everyone has had such helpful replies I am not sure if there is anything I can add. All of these symptoms are on the auto-immune spectrum and are often seen together in combinations in our situation of leaky gut. The differences come due to our unique constitutions, some genetic variations and lifestyle/behavior history. But all of it is part of our imbalance.
The fact that you have been in treatment for 1.5 years it is not at all suprising to me that you still have odd symptoms. Remember that IC IS NOT A BLADDER DISEASE! So just because your bladder is feeling better, does NOT mean you are fully healed. I think this is so important to remember. There are still twists and turns for many after bladder symptoms are reduced or gone. In this healing process it is normal, so try not to worry. Are you on the Facebook support page? You can PM me and I can friend you and add you to the group if you are interested. Lots of near real time support which can be nice when things come up.
Also in my opinion, the fact that Amy got a clear, western, clinical diagnosis of MS when she was in her 20s is just that, a western diagnosis. Many, many of us had symptoms on the IC tree of imbalance in our 20s. Amy's just happened to line up with a cluster of symptoms that fell into a western diagnosis. And of course MS symptoms are very hard to manage at times. But many with IC had fybro or chronic fatigue or endometriosis or other clusters of symptoms that point to a deep imblance and that is similar but ends up having different western names. You can be fairly confident that your lingering symptoms are a sign that your body is still trying to get back into balance and that more time is needed.
It is wonderful that you have seen such progress. What list are you on? When you say you eat potato chips, how many is that? I have a handfull a day so maybe that is an issue for me too LOL. If you are concerned you may just not want to keep them in the house. Did Dr. Brizman say it is an issue impeding your progress? have you been honest with her? Can you be sure it is potatoe chips that are impeding you? I think because healing is slow we search for a reason, when actually it is just the nature of this imbalance: A very slow drip by drip process of lowering inflammation and cleaning out the lymph system. If you can eat sweet potatoes you might satisfy the craving with a batch of oven fries, or toast up some kamut or rice cereal with butter as the occasional cruncy treat. At least that is not deep fried.
Honestly it sounds like it is just hard to wrap your brain around the fact that it may be 2-3 years in treatment before you are symptom free. This is hard for anyone to accept but is completely reasonable given the cirucumstances of our deep, deep imbalance.
If we don't excel at health, the only other option is disease.
Alisha I have strategies for
Alisha I have strategies for dealing with the potato chip thing. I have a small bowl and only allow myself that small bowl and then put the chips away. If you find yourself craving them, then just like sugar, try to distract yourself for a few minutes to see if the craving passes. Call a friend, pick up a book, do a house organizing project, get busy somehow! This really works. If it does not then don't buy them anymore. Sometimes this is the best way. your body will find other satisfying things. Be sure you still eat 1/4 plate ore 1/3 plate of carbs because your body DOES want that!
If we don't excel at health, the only other option is disease.
Mimi I love the way you
Mimi I love the way you explained my diagnosis. I don't really ever say I have MS much anymore because it really is one in the same to me. My first symptoms came after a perfect emotional & mental storm. I was in a difficult breakup from a 6 year relationship, I had a teaching job that caused me panic attacks & horrible anxiety & my grandmother passed away. I got a horrible cold that did seem to be going away I got an infection in my hand that sent me to the emergency room where they lanced it & drained the infection. My hands were numb I was tired beyond belief, I had a numb band around my torso & an electrical sensation down my spine when I put my chin to my chest. I found homeopathy after my second baby & it was amazingly helpful. My subsequentroblems were loss of sight in my left eye that came back a crazy itching feeling under my skin that wouldn't go away. Leg weakness, finger numbness. So many symptoms that you all explain sometimes. I now don't blame anything on MS anymore & truly believe that I will heal completely from both. I am currently off all MS medications... It's been almost a year & no exacerbation a...so I am very encouraged. Now if the damn bladder pain would go away!!!!!
Amy
SO Inspiring Amy- You are so
SO Inspiring Amy- You are so valiant to take this leap of faith and trust that your body will heal!
Amy thanks for explaining
Amy thanks for explaining some of your journey! I really find it helpful to think of this as an imbalance and really glad you don't put a stigma/label on yourself these days. REally your sx sound like IC to me (which LOL is just a western label for a constellation of sx that indicate the body is out of balance). I am so glad to read you have improved in those areas that seem neuro/MS related!! A lot of people diagnosed with MS also have bladder and digestive symptoms and improve on anti-inflammatiory balanced diets like we are on and healing protocols so you can see at a certain point it becomes about semantics, labels....
If we don't excel at health, the only other option is disease.
Aleshia there are people all
Aleshia there are people all over the world on gut healing protocols of various kinds. It takes on average 2 years if you are very diligent to re-seal the gut. Then add on top of the cleansing the liver and the lymphatic system and other organs that have been taxed from years of accumulated toxins. This is just a western way of looking at it. In chinese medicine terms the organ systems are out of balance and there is some combination of deficiency and excess, much of which takes a lifetime to create. It is not unrealistic or unexpected that you would still have symptoms. I know it is frustrating tho. Sorry!
If we don't excel at health, the only other option is disease.
Don't catastrophize, you are
Don't catastrophize, you are on a path to getting better whatever you are dealing with. My mom has MS and I used to worry about any strange sensation I experience. From what I understand, MS eventually gives unequivical signs to get an MRI. As a side note, my mom is a happy grandma and in pretty good shape 30 years later, so life goes on whatever the label.
You all are amazing. I just
You all are amazing. I just got to work on Monday and am sitting at my desk wanting cry my eyes out you guys are so great. It helps SO MUCH to realize there are others out there going through the same thing (extremely extended healing). I completely agree - what would I do any differently if I did get tests done? Nothing - I wouldn't start meds obviously, so what is the point. Amy - thank you so much for sharing about your MS it is truly inspiring that you are seeing improvements in that - I'm sure your bladder will follow shortly. Mimi - thank you for your help on the potato chips. It is an issue. I tend to not eat any for like 3-4 days and then go to the grocery store and eat 1/3 of a bag on the way home from the store, and then I feel so guilty I'll eat half a head of cauliflower when I get home with some eggs to try and "balance it out". The whole thing is really not smart so yes I do need some different coping strategies. I believe it got worse when I took almonds back out of my diet because Dr. B thought it might have something to do with the tingly feelings. I'm slowly starting to add almonds back in so maybe that will help. The issue is that the chips/cauliflower episodes never make my bladder feel any worse in the short term so there is no immediate consequence but I know there must be long term ones from forcing that on my weak digestive system. SO Perhaps after admitting all of that to you all I will feel more inclined to not have these creepy chip binges.
I am working through list 4. At this point, I feel the only time eating effects my bladder directly is when I have too much rice or too much of an apple or grapefruit. Greek yogurt and most vegetables seem to go well. Sweet potato seems to make my bladder feel better which leads Dr. B to think I'm more of an inflammation/deficiency issue opposed to yeast overgrowth though yeast I'm sure is involved.
Thank you all for waking me up a bit and helping me realize this will take longer than I originally hoped but I will get there. To be honest I think the anxiety that I might have to wait longer than I wanted to start trying to get pregnant is also effecting me SO i just need to let all of that go....
Sorry to ramble, ramble, ramble... Hope you all are feeling well today :)
Hey Alishia- It really sounds
Hey Alishia- It really sounds lkek you are doing SO WELL!! Many people have no where near the levels of improvement at the point you are in treatment. You are definietly going to get all the way to well. Also- I wouldn't automatically blame the chips unless this was a daily habit! I've read of people getting well really quickly who admit to eating a lot of chips and other questionly healthy things or even cheating on the diet- not that I think that is a good idea!!. Definitely not the best choice but really, don't beat yourself up about it causing all the inflammation. This is just a slow process- take it from me- I am really good with the diet but I have not had big improvements. That being said- nobody died from NOT eating chips! LOL
Also- I could see how worrying about when you could have a baby would be really stressful! Hang in there!!! ((HUG))
LOL you are doing just fine!
LOL you are doing just fine! Put the chips in the BACK of your car. Keep some dry roasted almonds in your purse (only a handful) eat those before or during shopping. Dont overdo the nuts either LOL. Don't go shopping when you are hungry. Eat some carrots or veggies/almonds if you are hungry while shopping. Been there! don't worry about the chips
If we don't excel at health, the only other option is disease.