Final day at mayo

Posted by ella2000 @ella2000, Jan 5, 2018

Today was my last day at the clinic. It's been a long week for me and actually glad to get back. I am leaving with a small amount of information. I feel as this trip here could have all been done at home with my doctors.
Here is a little break down
Gynocology
I had blood work and and ultrasound
Result
Ovarian cysts-have been aware of this
Polyops-that's new
May have endometriosis-that's new
End of it is a waiting game.....going on with that now for 2 years
Endocrinology
I had a questionare done, ct scan, nutrition class
I had kidney stones- knew that
I don't have one how- i would hope not
Class- told me what to eat and what not to but could not help me with what is ok to eat to prevent kidney stones and anemia.
Neurology
Head ct
I have migraines- knew this
I have tension headaches- I knew this
Did not learn anything here other than what I knew
Chronic pelvic pain CBT group
Best part of mayo trip for me. I loved the lady who taught it. I learned a bunch and will be working on things that I learned there.
They never discussed my anemia nor my thyroid issue. These were within my top three issues. Why do I have anemia? Even the doc here said it was due to heavy flow. Nope....I will not got into detail but I have had several procedures done and know my cycle is not heavy. So What? Why? His response well continue on oral iron with vitamin C. I have for a month already I have really bad symptoms. I had a bleeding ulcer from taking iron pills. He says I should increase the dose. I said I will not. Something else isn't right. Next question. Do you eat meat. I said I make sure of it . Oh...........well we will keep doing infusions. Let your primary deal with that.
I continued to question why I am so tired, nauseated, etc. All the time. He says I need to do more therapy. I am a firm believer in therapy but to get back to somewhat normal I have worked on my own with that and no improvement.
Thyroid. Yes I have a huge problem with that. We need to increase the meds. Let your primary work on that.
Let's so some more blood work. Let's set you up for a three day class. It's for fibromyalgia. Finally something.
Now I got news that my iga is HIGH.
This was all discovered at or after my last appointment.
So.......did I gain anything from mayo? Yes their education classes were amazing! That's why I only said i would come back. Other than that I do believe my mayo days are done. I don't see why I should travel so far just to get the same results as I have over the last year.
I believe mayo is amazing and cab help so many people but in my case I am walking away with
You may have endometriosis, celiac, fibromyalgia, increase synthroid, and great educational information.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@ella2000

Which Mayo clinic did you go to? I'm sorry you didn't get more answers, and didn't learn anything new about your diagnoses. You apparently have some good doctors at home. I think I'd have more confidence in my local doctors if Mayo didn't come up with anything I didn't already know. I understand that we would go to Mayo in hopes that they would have more specific information or explanation to offer, though.

Were you hoping to learn the cause of symptoms? I've been there. Sometimes it's like pulling teeth to get some doctors to take enough interest in your case to expend any extra time or research to find the answers you are looking for. Many of us don't fit the usual simple categories of illnesses. I've said it before, we have to be our own advocate. Don't give up in your search.

Jim

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@jimhd

@ella2000

Which Mayo clinic did you go to? I'm sorry you didn't get more answers, and didn't learn anything new about your diagnoses. You apparently have some good doctors at home. I think I'd have more confidence in my local doctors if Mayo didn't come up with anything I didn't already know. I understand that we would go to Mayo in hopes that they would have more specific information or explanation to offer, though.

Were you hoping to learn the cause of symptoms? I've been there. Sometimes it's like pulling teeth to get some doctors to take enough interest in your case to expend any extra time or research to find the answers you are looking for. Many of us don't fit the usual simple categories of illnesses. I've said it before, we have to be our own advocate. Don't give up in your search.

Jim

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Ain't it the truth!! There are many of us still searching-I even looked under my bed. ZILCH.

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@ella2000 I do not feel qualfied to comment on your pain experience except I have been suffering for 15 years with a burning in mouth- tongue- lips and more in that area. Medical profession admit it is real but they do not know how to treat it, i am at the stage of not remembering what I have tried as I go from one Dr to the next. I have been going to a big hospital pain clinic for years-- went 2 days ago and am trying another drug Lyrica-- I can't remember if I have had it before but-- like you it is walk away time.
I am leaving my body to science-- having had 2 rounds of surgery and chemo (not connected) and am in remission. there was a post on the wall , it read don't listen in to your pain listen out--- can you do that? I am going to try. I am 77 year old female wish you well and talk to me if you want. Noeline

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Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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@clissold

@ella2000 I do not feel qualfied to comment on your pain experience except I have been suffering for 15 years with a burning in mouth- tongue- lips and more in that area. Medical profession admit it is real but they do not know how to treat it, i am at the stage of not remembering what I have tried as I go from one Dr to the next. I have been going to a big hospital pain clinic for years-- went 2 days ago and am trying another drug Lyrica-- I can't remember if I have had it before but-- like you it is walk away time.
I am leaving my body to science-- having had 2 rounds of surgery and chemo (not connected) and am in remission. there was a post on the wall , it read don't listen in to your pain listen out--- can you do that? I am going to try. I am 77 year old female wish you well and talk to me if you want. Noeline

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@clissold

I took Lyrica, which helps many people, but after a few weeks I had reactions that put me in the hospital. Bummer because it was the only neuropathy medication that actually helped my neuropathy pain. But every medication has side effects, which can vary widely from one person to another.

Jim

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@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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I'm so sorry your going through this I was on Lyrica for along time I didn't get those side effects but it didn't help all that much that's why I did my own research in the fibromyalgia group online.If I hear of anything that might help I,'ll let you know.Drink lots,lots of water .

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@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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@cdcc — Did you taper off the lyrica? Or go cold turkey? I know that these types of meds can cause withdrawal, and need to be actively managed while you come off them. While Lyrica does help some, it doesn’t help all.

My thought is that you need a specialist, possibly not a family doctor. I’d hope you could get better management of your pain and your withdrawal symptoms. Blessings on you, my dear.

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@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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Living to tell about going cold turkey

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@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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Hi Lynn
I did do the tapering schedule per the doctor. As the tapering went down I became very sick with depression anxiety panic attacks as well as severe nausea. I couldn’t look st food, be around it etc..I ended up in the ER with severe depression and nausea. The ER doctor called poison control to see if the tapering was adequate which it was but they said since I’d been on it for so long the tapering was not long enough. I still am taking 50mg a day of the Lyrica. This needs to be halved for a week. The psychiatrist has told me not to start this until my celexa is increased to 30mg instead of the 20 that I have been on for years for depression. They fell when finally starting the last of this horrendous drug my depression won’t sky rocket. Hopefully this helped answer some of your questions. I’m open for discussion on everything. Thank you for your blessing Lord knows I need that

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@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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I,m sorry to hear about your side effects ,I was never on a higher dose of Lyrica just 50 mg so when I weened myself of it was every other day till I stopped .If you will take any herbs one for depression and just the feel good is Sam-e or St John,s Wort hope you find some relief Lioness

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