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My MSAA Community
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My Intro

Hi! I’m Linda. I just turned 48 and after spending 10+ years with a doctor who could care less about his patients & didn’t listen to my concerns. I finally found an awesome doctor who actually cares AND listens! I was referred to her by a friend who also has MS who has seen dramatic improvement in his health since seeing her. On my initial visit she was shocked that he never addressed my bladder issue even though I’m under still relatively young & expressed my concern.

She made sure I was off all MS medications since when I’m on them, I react poorly, over-medicated. She put me on vitamin D, a medication for depression depression that will also help with my energy, & a medication for overactive bladder. She also set me up with a physical therapist who only deals with MS patients! I am psyched!

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Hello Linda and welcome to the family.

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Thx looking forward to this! Now that my head is on straight I can do this!

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Welcome Linda! Glad to hear you have found a good doctor. Are you on any MS DMTs?

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I’m sorry... MS DMTs?

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Disease Modifying Therapies. The most effective one right now is Ocrevus. Most people are switching to it. My neuro says it:s the only MS DMT to slow down disability progression. You'll learn the lingo here. :). By the way, you and I are in the same age group. Irina

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Well, ocrevus’ side effects outweigh it’s benefits in my case, personally, & my Dr would agree since my tends reject MS meds, which is why I’m on just vitamin D & a couple other drugs 😊 Thx for clarifying DMTs , I looked it up & it came up with hallucinogenic drugs 🤔 Lin

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Interesting. The only side effect of Ocrevus I have seen reported (but not experienced) is hair loss. All the other DMTs are pretty hairy (no pun intended) in terms of side effects. When I was first diagnosed, my neuro said I had to be on something because (and I quote) "the train has left the station."

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I was wondering what DMT was referring to. You clarified it for me: disease modifying therapy/treatment. But all I came up with was the hallucinogenic drugs so I was concerned, because I want my brain functioning at its best as long as it can😊

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Great you have no side effects to the bladder/depression meds.

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Well, just didn’t want to get gross 😉

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Pepto doesn’t work, so I went to the pharmacy to see what could help and so far, no issues 😁

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Loperamide 2 mg 1 tab am & 1 tab pm seems to be doing the trick. Woo Hoo!

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So what side effects is Ocrevus supposed to have?

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PML I don’t want to chance that. Plus I have that virus in my body & the hair thing. I just got rid of my frizzy hair and the Avonex made me suicidal, my body/ bones ache like there’s no tomorrow! Don’t want to go through that again! Plus all of the other rejections my body goes through. Copaxone, Gilenya, Tecfidera, etc.

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Goodness, if you have that virus, sounds like the right call. But I think being suicidal is an MS thing - a lot of us go through this DMTs notwithstanding. Depression is a typical symptom of MS. Are you on any diet?

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No diet but I haven’t been suicidal since I’ve been off Avonex, which was known to cause suicidal thoughts. I’m on Lexapro so I’m so emotional(I’ve been getting angry, and that ISN’T me. But when angry, I’d cry, when happy, tears, ergo = frustration) The Lexapro is helping VERY WELL. I was on Wellbutrin XR for the past 16 years, but that stopped working, especially when I asked to be taken off of Cymbalta.(HATE that drug!)

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It is unbelievable to me that a lot of people still on this blog are on Avonex despite being known to cause suicidal thoughts!

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That was my 1st treatment in 2003. I compare future treatments to past experiences. Sorry for not clarifying 😢

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That is why I have to tell my new sweet Dr why I’m stepping away from Ocrevus. Aching muscles re: Avonex / PML, virus/ hair loss- already cut most of it in preparation to lose it to Aubagio 😁

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mymsaa.org/ms-information/t...

Here's the scoop on DMTs, which don't have anything to do with hallucinogenic drugs. Everyone reacts differently to any medication, and it takes a good doctor to help navigate through all the choices.

Welcome to the group! I'm so glad you have found a doctor who listens to you. That can make all the difference, can't it?

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Yes, yes it does! It floored me when she didn’t feel comfortable putting me on medication for my MS because of how I react to it. It’s like I’m being over medicated. I hugged her then & there (with her permission of course).

I’m looking forward to PT Thursday because this time it won’t hurt (last time I had PT I had herniated discs) now it’s my MS, nerves just misfiring or mis-communicating) easy peasy 😉 Thx for the welcome! ~ Lin

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I met someone who also is very sensitive to medications and therefore does not use any DMTs. There’s no single best path for everyone, that’s for sure.

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3 things my new Dr has done for me in 1 visit that my old Dr NEVER did:

1. Considered no medication may be better for my health

2. Addressed my needs bladder issues, updating depression meds (he said he didn’t know about that)

3. Never suggested PT! He was all about getting me on medication.

My new Dr. is all about what is best for me.

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Welcome aboard. It sounds like you’re heading in the right direction. What a relief that must be! I hope you learn a lot from your MS PT.

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My Dr noticed that I’m doing something to compensate while walking that I didn’t realize, so I look forward to fixing it! I can’t remember what but I get to be reminded 😊

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Hi Kompany Welcome aboard! I always love to hear when a Dr listens!

Are you on a med for MS now? 🤗💕

J🌠🦈

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Zip, zero, zilch 😁 she put me on vitamin D

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My last Dr was fixated on putting me on something, but most of my diagnosis I felt good on nothing

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🤣😂🤣 alrighty then! 😂🤣🤗💕

J🌠🦈

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Happy you found a good doctor who listens to you

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Sounds like you are on the right track though I would suggest getting on a disease modifying therapy YESTERDAY, this really is an important thing to do,

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Welcome to the group. I started on avonex to and didn't react well to it at all. I'm on tecfidera now and am doing much better.

I don't remember one of the side effects of avonex was giving suicidal thoughts. But i do remember that one of the side effects was that it could make you be snarky with people. That one made me laugh. I showed it to my coworker who then asked me "How are we supposed to notice the difference? You're already like that."

It gave me severe flu like symptoms that were supposed to stop after 4 to 6 weeks. 8 months later i was still suffering badly. My last dosage is still sitting in the bottom of my fridge after 2 years, because I refused to take it anymore. I got a new doctor who put me on the tecfidera.

Glad you now have a doctor who is worth her salt.

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Well, I was suicidal no questions asked. I lost my Mom earlier that May & I was married to an idiot of a husband who pretended to others that he was the best guy ever, but I knew otherwise. Just to put things in perspective: I was researching suicide in bed while Idiot was watching TV. He leaned over to see what I was doing before turning off the TV & said goodnight.

Was it the Avonex or the Idiot I’ll never really know. But I stopped the Avonex & the thoughts stopped & divorced the Idiot 6 or so months later.😁

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So you're in that club my Dad called "happily divorced." He was a content member of that club.

Glad to hear you're feeling better.

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Wow, I am happy for you! How fortunate! Keep us posted about your new meds and how you are doing.

Bladder issues are problems for many of us even if we are not young. I have had them since I was in my mid 40s. I have kegled my self blue in the face. And no matter what somehow I was always made to feel it was my fault. Now I know it is all in my head due to plaques in my brain and spinal cord and that is a relief. Furthermore, I know now that not drinking water is NOT an answer as chronic dehydration has its own issues.

As time went on and new incontinence products hit the market, I became more assured. Learning to time water or liquid intake has been very helpful. But spontaneous leaks or downpours are still an issue when ability to know the urge to urinate is absent.

There may not be a solution but Poise Pads helps a lot!

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Been there, tried that with the same results. The shaming is so cruel and unnecessary, especially coming from a male doctor who cannot put the puzzle pieces of symptoms together. I used to feel hostile to all those who dismissed my mild complaints as attention seeking. Now, I have arrived at a state of acceptance: I know my body better than some arrogant MD does. After all, I live in it and he doesn't. I wear what I call piddle pads ALL the time, treat myself like a 5 year old (we're leaving the house now, go before we leave) and know the location of every restroom in every place I visit frequently. And I can still pee in my shoes or on my doorstep. And it's NOT my fault so I refuse to feel shamed about it.

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Poise was working but expensive but then I stumbled onto LiveAnew.com where I can get pull-ups & briefs delivered discreetly. But if the meds work I’m hoping to return most of them.

Thanks!

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Wow! It's wonderful when one of us finds a truly caring medical team. Unfortunately, it's a somewhat rare phenomenon. Gone are the days of Marcus Welby.

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Welcome to the family! I am so happy that you found us, and a

Dr. you cares about YOU!

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Having a good doctor makes all the difference, sorry you suffered 10 years with a bad one.

If Avenox is the only DMT you have been on I wouldn't jump to the conclusion you will react poorly to all DMTs. I was on Rebif for a year and if I forgot to take 800mg of Ibuprofen with it I would have flu like symptoms for a day. Not all DMTs have the PML risk. I have the JC virus as well, it is very common. I am on Ocrevus now without any problems. From what I can tell the hair loss is not very common. It can increase risk of infections but I have been on it 3 years and have only had one minor cold during that time.

Maybe after the Avenox is out of your system and your new medications and physical therapy have had time to help you can reconsider another DMT. They help slow disease progression. The first two I was on didn't help much but the Ocrevus is helping a lot. I am 50 and I am hoping to continue to work 5 to 10 more years. I don't think that would happen without Ocrevus.

Good luck to you and welcome to the group!

Annette

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Annette, I have been through a lot. Avonex was the first. My doctor now went through them all & came to the conclusion that being treated for MS in my case is over-treating me. My body rejects it. Vitamin D is the way to go for now.

Lin

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welcome! It is like the breathe of life when you find a dr.that is helpful and listens

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Pam, I was on a high on Sunday when seeing my friends telling them about my experience Thursday with my new doctor. Unfortunately I wasn’t pacing myself. I didn’t know I had to! I passed out at the water fountain! When I came to I was surrounded by friends with magazines as fans (I was overheated)

It was just before our meeting started, so everyone was getting seated.

But unfortunately due to a side effect of the mood drug I had to go home. DH wouldn’t let me drive home (He usually lets me be me but I did just pass out - that has never happened!)

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I am going to write a book about MY life called "YOU CAN'T MAKE THIS STUFF UP"I am sure you and alot of others could add something

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Welcome to the forum, Kompany , and to finding a good doctor that will make a difference. Communication is key. We are all here in this forum for support with this 'ms'.

Again, welcome, and together, we are stronger.

Keep Smiling,

Carole :-D

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Smiling is key. Even if you don’t feel like it, if you do it then someone smiles back.. what a feeling!

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Hi and welcome aboard!

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Thanks Julie!!

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Welcome! Now that you've heard from many people, I'm going to confuse you just a bit! I've had M.S. for 20+ years. After 1 year did DMT's for 10+ years. Back in those days it was the ABC drugs (Avonex, Betaseron, Copaxone), and Rebif, did that one the longest,... all injectable interferons. Got the flue like symptoms initially, went away. But years later, sept years with flue like symptoms, non-stop. My Neuro of many, many years (a nationally recognized MS neuro who also traveled internationally to speak to other neurologists on his work....you get the idea, one of the best of the best, told me to stop the DMT's, as they were not helping me in his opinion, and news he had not told me at that time, a larger percentage of patients on DMT's eventually became intolerant of them with time. Yep, me!

So off I went, not more DMT's. But with it, went a long, long list of drugs for side effects of this drug, and that. Like a house of cards, they all came tumbling down. I now do vitamins. Yes Vitamin D I did those script only doses prescribed by me D.O., and of course Fish Oil, Turmeric, and B12.

That's it! Oh yes, don't let me forget, for the evening burning feet pain, the kind you literally want to cut off your feet every night, but you know doing so wouldn't help, because the pain is not really in the feet, just feels like it. But wonder why you wake up in the morning with charred feet you can almost smell the burn skin? Well after years....my neuro told me of medical cannabis that was going to become legal in my state........years ago now....but I was in line day 1 when it finally did in hopes. My arsenal of drugs for that pain alone, none of which helped, were useless. Day 1, I was euphoric!!! on a non-THC strain! The CBD did the trick! Pain was gone in 2 puffs off a vaping tool for flower! Been doing the same, every night, except when I travel, and it works. Yes, without it, the pain is still there. But with a few puffs, doesn't show. Tried THC strains. They help, but not as well for the pain. Certain THC strains (Sativas), work well for fatigue. Fatigue is setting in..., a few puffs off the vape tool of an energizing Sativa flower, and the lawn gets the weed trimmer edged, cut, and then full blower clean-up, just like the lawn services, but without the fancy ride on zero turn mowers. BUT, lots of steps!!! (I use a fitness tracker to count steps. 10K minimum per day is my goal, and after years of healthy eating, I can do it without problem.)

So, FINALLY, getting to the point: Healthy eating saved me! After the DMT's, after finally at the recommendation of 7 doctors or other equally qualified individuals, I hung up the towel. Sold my businesses, and retired to disability. Shortly after, I went comatose. For years! (Not really comatose, but I felt like a walker, as in the walking dead). I could not even watch simple TV shows, as I could not follow them! This ex-engineer, C.E.O., lots of other impressive credentials......yeah, I went comatose. I'm a fighter when it comes to this disease. Who else would put up with years of non-stop flue symptoms? I thought about how I went comatose everyday after eating. I tried and tried. Just an egg, nothing else. Nope, comatose within a couple hours. So I tried juicing fruits and veggies. Did so for a couple years, transitioning to vita-mixing to get some bulk. Eventually weaned onto solid food, but heard from one of my neuro's about Dr. Terry Wahls. The person with M.S. who had access to medical things the average person didn't, found a way to help herself, started a clinical trial, that got money pulled because the results were so good, and the pharmaceuticals funding her didn't like it.....the story goes on.... Tried her essentially paleo diet. Actually, thought caveman. Nothing processed. Lots of fruits and veggies, with a little (very little) lean meat and fish or seafood.

With time, this was the key to my improving. Yes, I have a list of M.S. symptoms that it is easier for me to check which one's I don't have, rather than those I have, on the Neuro's intake paperwork. BUT....I've not had a relapse in over 5 years now! And, I've even eliminated a few of those symptoms, including the lost vision spots I've had for years from having optic neuritis 7x! I was told by every ophthalmologist that what was left after the episode, was permanent. Healthy eating! Eliminate processed foods! From the guy who made much of his living off of servicing the food industry, all processing food we are so used to eating!

Not recommending giving up the DMT's. BUT, Recommending really, really looking at what you put in your mouth. Very Seriously. There is lots out there now on food and auto-immune diseases. Yes, M.S. is one of them. Look into it. No doctor is going to fix the what we eat problem with a pill, or any other kind of med. Food can be the best medicine. If not a medicine, at least by eating right, it isn't poisoning our bodies in such a way as to create these problems. Did you realize in the few un-modernized parts of the world, the people do not have any of the auto-immune diseases so ramped in societies today. Healthy eating is the best thing you can do for yourself. No it's not one healthy meal, and I'm better. Try a year of healthy eating, and then look at yourself. Are you better? For me,... H E double toothpicks YES! I hear many people who seriously try one auto-immune diet or another, and all tend to see improvement. Some better than others, but improvement is good. Till the cure!

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I’m all for doing the foodie way... just not too foodie. I don’t want to add more to my hubby’s plate. He does it all already 😁. Less meds & no “natural miracles” (When my Mom was sick, friends kept suggesting things that were natural ‘cures’ but they just made her sicker. I’m my mother’s daughter & I tend to inherit her susceptibilities😏)

I met a woman @ SBUX who is a case worker with a medical background, in fact, she helped me find my head meds (Lexapro) to talk to my Dr about. I won’t be seeing my Dr until September, but I see this women on a regular basis & told her issues that I was having while on my new meds- Lexapro + vitamin D and she recommended BRAT ( I do banana, saltines [less the salt], & applesauce) So far no issues 😁 I can’t wait until my body adapts & I can eat normal food. We stay away from processed food any.

I was adding turmeric & pepper to my tea & that wasn’t half bad! It made it kind of creamy. I stopped drinking coffee in October last year because I never felt good after drinking it. Caffeine does nothing for me anyway.

I was put on Provigil by my old Dr because the medication I was on didn’t work anymore. When that started wearing off, I started to take a little more, but I started to get sleepier. At

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Been on Nuvigil, then Provigil, to try and keep me from falling asleep in Chicago's morning rush hour traffic, I had to do nearly every day. Didn't work. Never hit the car in front of me, but the slit I could maintain open in one eye, took everything out of me.

Eventually gave it up, because it wasn't helping. Okay, I have something that does, but it wouldn't have helped me for this, because no driving under the influence. NEVER, EVER. An energizing Sativa Cannabis, yes with THC. CBD energizers do not exist as far as I know. But again, read my post. I can do the lawn, with all the extras, AND go for a long walk thereafter. Absolutely no problem getting my 10K steps those days. Try 20K! Approximately 10 miles?

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I’m all for doing the foodie way... just not too foodie. I don’t want to add more to my hubby’s plate. He does it all already 😁. Less meds & no “natural miracles” (When my Mom was sick, friends kept suggesting things that were natural ‘cures’ but they just made her sicker. I’m my mother’s daughter & I tend to inherit her susceptibilities😏)

I met a woman @ SBUX who is a case worker with a medical background, in fact, she helped me find my head meds (Lexapro) to talk to my Dr about. I won’t be seeing my Dr until September, but I see this women on a regular basis & told her issues that I was having while on my new meds- Lexapro + vitamin D and she recommended BRAT ( I do banana, saltines [less the salt], & applesauce) So far no issues 😁 I can’t wait until my body adapts & I can eat normal food. We stay away from processed food any.

I was adding turmeric & pepper to my tea & that wasn’t half bad! It made it kind of creamy. I stopped drinking coffee in October last year because I never felt good after drinking it. Caffeine does nothing for me anyway.

I was put on Provigil by my old Dr because the medication I was on didn’t work anymore. When that started wearing off, I started to take a little more, but I started to get sleepier. Thankfully the Lexapro is killing 2 birds with 1 stone. My emotions are in check & my energy is where it’s supposed to be.

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I’m all for doing the foodie way... just not too foodie. I don’t want to add more to my hubby’s plate. He does it all already 😁. Less meds & no “natural miracles” (When my Mom was sick, friends kept suggesting things that were natural ‘cures’ but they just made her sicker. I’m my mother’s daughter & I tend to inherit her susceptibilities😏)

I met a woman @ SBUX who is a case worker with a medical background, in fact, she helped me find my head meds (Lexapro) to talk to my Dr about. I won’t be seeing my Dr until September, but I see this women on a regular basis & told her issues that I was having while on my new meds- Lexapro + vitamin D and she recommended BRAT ( I do banana, saltines [less the salt], & applesauce) So far no issues 😁 I can’t wait until my body adapts & I can eat normal food. We stay away from processed food any.

I was adding turmeric & pepper to my tea & that wasn’t half bad! It made it kind of creamy. I stopped drinking coffee in October last year because I never felt good after drinking it. Caffeine does nothing for me anyway.

I was put on Provigil by my old Dr because the medication I was on didn’t work anymore. When that started wearing off, I started to take a little more, but I started to get sleepier. Thankfully the Lexapro is killing 2 birds with 1 stone. My emotions are in check & my energy is where it’s supposed to be.

Thx Mark!

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What state do you live in. I’m interested in looking for new physician.

Thanks

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Northeastern New York

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Thanks for sharing. I wish there were more Ms Specialist, genetic and environmental. No one can help you with all but I feel pain, genetic with spine and Ms. Ten plus years is long. Thanks for your help. Keep strong and well.

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