Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I think most side effects are quite rare, but I’ve seen reports of nausea on this list. I experienced lower cholesterol levels and increased insulin sensitivity. Both of these were alright with me, as I have diabetes 1. Budesonid on the other hand decreases insulin sensitivity and to some degree increases the risk of diabetes 2. I had to increase my insulin injections while on budesonid/Entocort and decrease while on Questran.
Did anything change? I thought you wrote that the MRI was not indicative of Multiple Sclerosis?
Your life is not over yet. Today is the first day of the rest of your life. We can decide how to live our life and make changes to our attitude and our thoughts about our life every single day. As hard as it is not to have regrets about the past or worries about the future (I am definitely the queen of worries, and working hard to change this), the only time we have is the present, right now. I try (and don't always succeed) to spend more time in the presence instead of ruminating about the past and worrying about the future.
There is a very good book written by Jon Kabat-Zinn, called Full Catastrophe Living. In there he wrote: “As long as you are breathing, there is more right with you than there is wrong, no matter how ill or how hopeless you may feel.”
Focusing on my breathing, listening to a guided meditation, doing yoga, going on a walk outside, help me find some calm and be more in the present moment.
Wishing you well,
Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
The official MRI report (which arrived yesterday) identifies lesions on the brain in places typical of MS, even if the precise categories are not met for a diagnosis . I cannot see how this can be labeled as "normal." My paresthesia continues.
I emailed the Celiac Center at U Chicago to see if the my paresthesia might be a form of neuropathy correlated with Celiacs; the answer was "No" since I am consistently gluten free.
So, alternatives to MS are running out. My symptoms continue and my gut is back to its worst.
I have read that sometimes IBDs such as Ulcerative Colitis can give rise to brain lesions, but this is looking like a last grasp.
I do appreciate your kind words. If they don't sink in right away, it doesn't mean that I haven't begun to take them to heart. Change takes time. I feel trapped at the moment--mainly by my job--and somehow need to find a better way, whatever the diagnosis ends up being.
I really like the quotation, and I will look up the book.
Paul
please look at Dr Wahls protocol - with right diet and right supplements she (a doctor) has gone from being wheel chair bound MS patient to living life (riding bikes) with reasonable control on symptoms MS patient.
we cant cure some of these issues, but we can minimise their impact on our lives.
3-4 years ago I had multiple AI issues some in chronic state, i didnt work for 18 months and was on temporary disability. with right eating plan and lifestyle plan, good quality supplements, I have done alot of healing. I am back working near full time, enjoying life with energy and focus. there are niggly symptoms here and there, but i know and manage my triggers and budget my energies a bit.
at the moment it is overwhelming, I can assure you that with time, support, guidance and putting your energies into good things, you can overcome the worst of the situation.
healing hugs.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Yes, definitely get the "Wahls Protocol" book from the library or Smile.Amazon.
Our very own Tex, if I recall, had "dark areas" on areas of his brain. He is still alive and kicking. The Docs could never figure out why he had that. If I recall, and I may be wrong I think he thought it was from gluten damage pre diagnosis, i.e. before he went GF.
I'm not sure if you saw my thread on kidney and creatinine? I was diagnosed with 15% kidney function about 4 months ago. This was very stressful. Numerous doc visits etc. 15% is where the docs start talking dialysis or kidney replacement.
I'm now at 70% kidney function which is the high end of normal. Try not to future trip. Take things one step at a time.
Since Entocort worked so well I'd really consider going back on it for 5-6 months while you work through things.
You should get immediate GI relief and I think mentally start feeling better since you would not be dealing with the WD and stress of that.
I've done Entocort (4.5 months), cholestyramine (1 month) and the pepto bismol protocol. Since you've struggled for years with WD consider get on some pharmaceuticals to help while you work through things.
Also MC does not seem to have a strong linkage to MS while other diseases do. Thyroid issues have a strong linkage to MC.
I think since I've been on the forum in 2010 I can only remember one member who had MS preexisting to getting MC.
There are some theories out there that celiacs have some level of brain damage that occurred prior to going GF and the damage can show in scans. I had serious memory issues from age 45-50. Once I was diagnosed at age 50 and went GF the memory issues went away. There is no doubt that if I had brain scans I might have dark spots or white spots from preexisting gluten damage.
I am so sorry to hear about your MRI report, which is obviously worrisome!
Gabes is right, you should definitely look at the book Wahls Protocol by Dr. Terry Wahls. The son of my sister's friend was diagnosed with MS at age 8. His mom (my sister's friend) is an oncologist. As a doctor she started researching all she could. Autoimmune diseases run in her family. She put her son (the entire family, actually) on a very specific diet (I am not exactly sure of all the details, but I know he is not allowed sugar, dairy, meat has to be grass-fed, she makes sure he gets enough vitamin D with his supplements and tests his blood level regularly, I forget the rest). I think it has been at least 3 or 4 years, if not more since his first attack, and he has not had another attack or any symptoms.
An acquaintance of mine has MS as well. She was diagnosed in her late twenties. She now has two toddlers, is politically very active, seems to be a bundle of energy. When she told me this summer that she has MS I thought I didn't hear right and asked her if that was what she just said. I would have never guessed. She told me that she has been on MS medication for years, she watches her diet, and she has not had any episodes in years either.
As scary as the thought of MS is, please do not picture the worse possible outcome. There are many people with MS living very active lives, and living long lives, too.
And as Brandy pointed out, who knows if the brain lesions are really due to MS? And not due to gluten damage?
Take good care of yourself, without worrying what others think. YOU are now your number one priority, not other people. Don't feel guilty about it. This is not selfish. You cannot give to others unless you are in good shape yourself.
Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
You have given me heart. I have spent the last few days in bed, as deep a depression as I ever had. Thank you for your comfort.
I did have a phone consultation with my Gastroenterologist, and she has prescribed me cholestyramine as advised on this thread. I feel a bit more secure with that, at this moment in time.
I am nervous about Budesonide, although it worked so well for me, for the reason I gave (illogical as it might be)--that if the inflammation is dampened in my intestines I fear it will move somewhere else. I already have Addison's Disease, Celiac and MC, so have become rather paranoid of autoimmune conditions.
I agree that I need to get my stomach back to some kind of normality before I can move forward with anything else. I spend the first half of the day rushing to the bathroom with typical MC watery D.
When I am ready, in the next week, I will arrange to talk with my Neurologist by phone. As some of you have pointed out, there does seem to be some research that correlates celiacs and IBDs with brain lesions, so I live in "hope" (if that is the right word, everything is relative) that the lesions on my brain are residual effects of past conditions rather than MS, and that my paresthesia will prove to be a passing annoyance rather than the harbinger of something worse.
I tend to be the kind of person that confronts a barking dog rather than runs away, until I have been able to find answers I can live with, that satisfy my doubts, exhausting as it is to be like this.
I will follow-up. Again, thank you for the reassurances.
Paul
nothing wrong with confronting barking dog..so long as it is with calm rational thought approach.
one thing i have learnt in my wellness journey is life is 10% what happens to us, and 90% how we react.
there is a 'sweet spot' / delicate balance spot of being proactive, informed about our health and doing nothing.
overthinking without facts is not good for our wellbeing.
there are multiple published studies that talk about brain lesions etc due to IBD's / gluten damage etc.
ongoing symptoms / multiple autoimmune conditions is the bodies way to tell us that it is needs help. it is highly inflammed, there are too many triggers/toxins going in, and our body is not capable of detoxing them.
our guidelines to recovery section is all about how we reduce inflammation, reduce toxin load on the body, get the the detox system working well, optimise healing in the gut, support the body in the healing process. it is very similar to Wahls protocol... another good resource is Dave Apsrey bulletproof system, he is another that has healed and optimised his wellness after chronic illness.
take it a step at a time, there is no quick fix,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
