Has anyone taken PML for MC

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JeneralJenn
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Has anyone taken PML for MC

Post by JeneralJenn »

Hi there,
After suffering 10 months of the big D, fatigue, procedures, migraines, medication side effects, weight loss, and multiple doctor's appointments, I'm think about taking 6 weeks of paid medical leave from work. Had anyone done this before for their MC?
Here's the deal. Am I done with this? Of course not! I was also diagnosed with a large hiatal hernia that causes pain on my upper stomach ya know, just randomly. I'm not longer allowed to take NSAIDS for headaches, so I may need botox. My GI wants to run more tests that are not local. And my mental health prescriber might need to adjust my antidepressants in case those are a culprit.
Also, I'm on budesonide and experiencing a LOT of the side effects: constipation(great), muscle tension, irritation, excessive urinating, lack of sleep, easily bruising.
And I work in the disability community where I'm always on the floor, not at a desk. My GI said she wouldn't fill it out. Don't think she can. My GP is a jerk. I'm seeing her September 13, 2022
Two questions:
1) Be honest, do you think I deserve the times off to test and recoup and go to my multiple appointments?
2) How do I approach an apathetic doctor?
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Gabes-Apg
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Re: Has anyone taken PML for MC

Post by Gabes-Apg »

Hi there

I haven't taken 6 weeks paid medical leave. at First I changed my work schedule to a 9day fortnight so I could get extra day to do cook ups etc and do appointments on that day (I did that for 12 months. The next change was to change jobs and move from a major capital city to a regional city so that I could manage the appointments better (was able to do things after work at lunchtime etc)

re the budenside - if you are having constipation have you reduced the dose?

are you taking Vit D3 and magnesium. These are essential for auto immune issues, IBD issues and will help with the constipation issues

On the site we have a list doctors that others have found helpful - have you reviewed this?
https://www.perskyfarms.com/phpBB/viewforum.php?f=40

For my wellness journey it was functional practitioners that 'gave me my life back' along with a very diligent approach to low inflammation eating plan and lifestyle

hope this helps
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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JeneralJenn
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Joined: Sat Sep 10, 2022 3:47 pm

Re: Has anyone taken PML for MC

Post by JeneralJenn »

Thanks Gabes,

Wow! That seems...like a lot. First let me say how proud and humbled I am of you for taking the times to answer me AND making your health a priority. I have not...so here we are. Although I know it can happen, several doctors told me this disease is more common in women older than me (I'm 40).
Although I know i suffered from anxiety and depression, I struggled with it most of my life and "hid" it until I spiraled out of control. I played the perfectionist game until 34 then was diagnosed with generalized anxiety disorder, bipolar 2, and major depression.
Took me awhile to get back on my feet, but then I thrived again. In November 2021, I was hospitalized for migraines for 2 weeks and they couldn't figure out what was wrong. THIS was when the diarrhea started. Migraines weren't under control until I started injections in March. And 3 weeks ago got my diagnosis. Asked my neurologist if the inflammation in my gut could be correlated to my headaches. He said...no.

I have NEVER been one to shy away from change. I sometimes thrive in it. But, I'm so miserable right now - mentally and physically. At my job, I work 8- 4 with no break. It's so hard to plan anything or answer doctor calls. I couldn't take a vacation last year or his year due to using up my time for sick days and appointments. I just need some zen right now before I got crazy! I want to learn more about this disease and regulate and decide if I SHOULD change jobs.
Oh 💩! I rambled on! Again, thanks for the advice! I will check out the links for sure!
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Gabes-Apg
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Re: Has anyone taken PML for MC

Post by Gabes-Apg »

I was 40 when my MC Dx came along (that was 13.5 years ago)
( I was single, no family nearby so had to work to support myself and pay the bills)

based on what you have shared my suggestions

1. Stop breathe.

2 Let go of perfectionism and having total control. - new motto. progress not perfection

there are quite a few things that you can do without relying on medical fraternity to gain some improvements

- low inflammation eating plan
- low toxin lifestyle
- take the right supplements (Vit D3 and magnesium will help with MC and anxiety and depression etc)
- meditation / yoga. 5-10 mins a day.
is there a spot that you go to near work place and sit for 5 mins in quiet before going into workplace ?
- Play supportive podcast/audio book after work to cleanse mind of the day so you can be in good frame after work to nurture your body
- Do cook ups on the weekend so you have meals pre-prepared for the week
- Magnesium soak after work / before bed to relax and optimise good sleep

Dont rush into changing jobs just yet. changes like that can be pretty stressful, best to do it with good information and to a better job rather than do it in a hurry and potentially end up in worse place
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
JeneralJenn
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Re: Has anyone taken PML for MC

Post by JeneralJenn »

I've taken D3 since my mind 20s. I live in New England and we spend half the year in the dark. I didn't know about magnesium. How much are you supposed to take?
I get to work half an hour before my shift starts to decompress before the day starts and every day we take walks (weather permitting) or i try to do inside physical activities (pilates or zumba on youtube).
I LOVE podcasts, but primarily true crime...lol. Narrative is soothing to me no matter what! Meditation is hard because I can't stay out of my brain. I should try harder.
I also LOVE cooking...and healthy food. I helped my husband lose 50lbs. but this is different. This is more limited. It sucks. I don't want to get rid of gluten or spices or beans and vegetables! It's...not normal.
I've always been like "ok, I'll just deal with this" but this just seems so hard and frustrating.
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tex
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Re: Has anyone taken PML for MC

Post by tex »

Hello JeneralJenn,

I'm in full agreement with Gabes, especially on the magnesium. Not only is magnesium essential for activating vitamin D, so that the immune system can use it, but magnesium deficiency is associated with migraines. In fact, I can site a medical reference that concludes that magnesium can be used to treat migraines, but doctors prefer to ignore that information, and prescribe prescription drugs for treating migraines and every other disease under the sun. Because it's essential for proper immune system functioning, magnesium deficiency is associated with every disease known to medical science, and magnesium is especially implicated in the development of autoimmune diseases, such as MC, and other IBDs.

Doctors never diagnose a magnesium deficiency, because they've traditionally ordered the wrong type of test for detecting magnesium reserves. The tests they use measure the serum level of magnesium in the blood, but that's automatically regulated by the body, and when there's not enough magnesium in our diet, the immune system pulls magnesium from muscles and bones (where it's normally stored), in order to keep the blood level of magnesium within the normal range. This often causes leg cramps and foot cramps in the wee hours of the morning. By the time a magnesium deficiency shows up in the type of blood tests the doctors normally use, magnesium reserves are already so low that the body will often be showing life-threatening symptoms, such as cardiac issues, abnormally low blood pressures, etc.

Then, to make matters worse, MC depletes vitamin D and magnesium, and so does budesonide, the most common treatment prescribed by doctors. to treat MC.

Magnesium deficiencies develop because our soils no longer contain the magnesium levels that they did originally, consequently the food growing there doesn't contain as much magnesium as it once did. And farming began in Europe long before it ever began in the US, so your soils are surely even more depleted.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
JeneralJenn
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Re: Has anyone taken PML for MC

Post by JeneralJenn »

Tex,
Ha! Interesting! I had no idea! Been waking up with leg cramps recently too! Thought it might be low potassium, but also, ignored it because frankly, it's the least of my problems! Lol
Thanks for the info. Im going to try out the combo. What unit of magnesium does one take?
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tex
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Re: Has anyone taken PML for MC

Post by tex »

Many of us take magnesium glycinate, because it's easily absorbed, and probably the least likely form of magnesium to cause diarrhea. We can't absorb large amounts of magnesium at one time, so it's best to stretch out the dose during the day, by taking one tablet after each of three meals, for example. Many of us use Doctors Best Brand, which provides 100 mg of magnesium per tablet. That way, three tablets provides almost the daily recommended amount (RDA).

Too much, or the wrong type of oral magnesium supplement can cause diarrhea, especially while we're recovering, so some of us can only tolerate a smaller dose, or none at all. For those individuals, magnesium oil, or magnesium lotion applied liberally to the skin frequently can help. Some people use Epsom salts for foot soaks, and some add a cup of Epsom salts to bathwater, in which they so for 15 or 20 minutes, a time or two each week.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
JeneralJenn
Posts: 7
Joined: Sat Sep 10, 2022 3:47 pm

Re: Has anyone taken PML for MC

Post by JeneralJenn »

Already bought some one Amazon. Coming tomorrow. Thanks, Tex!
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