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Mayo Pain Rehab Clinic

Sep 29, 2015 1:33 PM

Look up YouTube, "Dr. Sletten + Centralized Sensitization Syndrome".


causing my problems in the somatsensory cortex of my brain. Omg, talking to the doctor & watching the video, I'm thinking this diagnosis could pertain to & explain a lot of us in the community.

After our discussion we decided to let them see if insurance will approve. That will take 2 weeks. If it's approved my hubby wants me to do it. He wants me to regain control of my life by "reconditioning my brain & body in this program, in order to have a better quality of life" as the doc said.

One of the hotels cuts their rates in half for patients in this specific program,aking it affordable. The rooms have refrigerator, microwave, coffee pots, so I could eat b'fast & supper in room.

We researched the last few days and only inpatient Rehab for stroke or heart attack or cancer patients available in our area. I guess it's a wait and see, depending on insurance mostly. Doing a lot of praying for guidance too.

Of course I've never been away overnight by myself in decades. I won't know what to do with so much time to myself! Lol. 🙏🌼

Sep 29, 2015 1:54 PM

Wishing you all the best. Take a great book or guilty pleasure and enjoy yourself.

Sep 29, 2015 10:27 PM

Thanks LMB! Unfortunately, after the 5 1/2 hr drive home, rehashing everything that was said to us by the doctor and nurse, and pulling up my records to see the diagnoses, I'm more confused than ever & so is my hubby. It's amazing how much talking for 5 1/2 hours can enlighten and give a different perspective. And now not only is my hubby doubting, he's got me doubting too.

For instance, the pain clinic nurse said my diagnosis is the CSS (Centralized Sensitization Syndrome). It's not mentioned in the documents showing online, nor was it mentioned by the referring doc. I'll admit, after reading about CSS I'm like, "Wow, that makes a lot of sense!"

Diagnoses mentioned are 1) Functional Neurological Disorder, 2) Peripheral Vestibulopathy (cranial nerve VIII), 3) Myoclonus of hand, 4) Defensive form of Positive Impression Management, & 6) Somatization. I've pulled info on all and neither my hubby or I really understand what they mean by the last two, but what we can understand doesn't seem to fit me or my personality, or the actual diagnosed causes of my chronic pain/health issues. But, as I said before, they haven't looked into my full health history, only the meds I'm on. They tried to convince me that they'd have me cured from all my problems caused by pain so I'll have no need for the meds, even my IBS incontinence. Have I said it sounds too good to be true?

Mayo provided us a folder filled with info about the program that I read to my hubby going home. It's technically 21 days following a full day of orientation. Each day (M-F) is 8am-4:30pm. Each day is broken down into hourly or semi-hourly scheduled activities; rotating every other type medical disciplinary. These consist of various PT & OT periods (total avg 3 3/4 hr per day), and class room time of educational portions (dietician, reprogramming brain on pain responses/psychology, learning alternative ways to handle pain-less meds, stress education, biofeedback, etc) for 3 3/4 hr per day. Everything they do seems geared at getting people off meds while reconditioning the body and mind, to become functional with an improved quality of life... All in 3 weeks time. The RN said I'd be taken off meds and would have no reason to see my special doc "ologists" because my PCP would take care of my meds and refer me out if I needed it. But wait... every specialist doc I have is because of a real, true, diagnosed problem that causes pain. Did I say I'm confused? Oh, yeah.

It seems illogical that after having to ride in a wheelchair to make it to the appt because less than halfway there I was hassling for breath, they're saying in three weeks they will have me back walking without a cane, walker or cart. When I pointed out extreme activities trigger my asthma & my body didn't become deconditioned over night but five years, the RN said, "but you'll be surprised at what we will accomplish with you."

Later while driving my hubby asked me what I thought about the doc and RN "selling" the program. I told him it sounds too good to be true, and that I was still concerned about them 1) wanting to take away my meds for migraines, vertigo, pain, tremors, anxiety, osteoarthritis & joint pain cremes, (anything not related to my autoimmune diseases or depression); 2) when I expressed concern of the expense of the hotel & food, regardless of insurance paying, both the nurse and doc (separately) stated "if you need to wait to save up the money for those expenses then do so. Come to us in a year or two if it takes that long. We'll still be here and we'd like to help you.". My hubby responded and said the" wait until you have the money saved, even if it takes 1-2 yrs" made it sound more like they are interested in getting the money more than they are with my medical conditions. If "not being treated could worsen my symptoms" like the referring doc said, why wait 2 years? I mentioned having had PT/OT locally to the RN earlier and she first said "No one in your area has the multidisciplinary team with this detailed treatment plan," (in other words, no one else is as good as them), but when I mentioned it the second time and hinted at getting PT/OT close to home due to finances she said, "Well that would be a good way to start until you can come back here." So closer to home treatment wasn't good enough at first but it was later... Hmmm?! Mixed signals there.

Then we started figuring out the cost to go down versus the cost of getting just PT/OT locally, and for the price of going to Mayo's program (out of our pocket) I could do two years of PT/OT at home. Do I have a psych-ologists? Check! A gastroenter-ologist? Check! A ur-ologist? Check! Etc...etc.

While still on the road I called several local rehabs and they all have PT and OT. They all said they can help recondition my body, help me with the dizziness, imbalance, and tremors. They were confused about the biofeedback though. Me too, though she said they place electronic pads on my body which will show tense muscles and I'll get to watch my muscles relax with stress and relaxation treatment methods. Whoopee!

See why I'm confused. Do they really want to help me, or are they wanting whatever my insurance will pay on the programs $30,000 charges? Hmmm? More thinking, talking, weighing, and praying is in order I think. And I'd love to hear all your opinions and suggestions! Really!!! 🙏🌼

Sep 30, 2015 3:31 AM

I will definitely being praying for some wisdom on this one.

Sep 30, 2015 6:32 AM

Good morning Flappys, my thoughts for this are the same as for the last one. Something smells rotten in the state of Denmark. Will talk to you later. Getting ready for the doc this morning.

Sep 30, 2015 7:50 AM

Thanks Gammymac! I need the prayers for wisdom & clarity in this muddled mess!

Thanks Amanda! Thinking positive for you, that you'll get good results today! 🙏🌼

Sep 30, 2015 7:58 AM

Flappsy, to me it just seems that their only goal is to get you off of all your medication. Knowing that we don't WANT to be in these meds, they are able to use that as the lure saying that we will never need to take them again and that they can "fix" our problems with all of these classes, etc. I've always felt that the statement "if it sounds too good to be true, it probably is" really is a true statement. It seems to me, from your post, they did not address your health issues. You have gone through years of tests and doctors visits and have been legitimately diagnosed with these illnesses. OH.... And yes, why is it alright to wait two years to get the money together and go back for the program? There seem to be many contradictions in their info to you. I will be praying for you that God gives you a clear vision of which direction you should go. I don't get how they can "cure" your IBS and pelvic floor disfunction. (Are those muscles going to magically regenerate and become as they were before your surgery? I don't understand the diagnosis that they have in your chart either. It doesn't make sense to me. I am so sorry you are in this whirlwind of confusion. I wish I had better advice for you. The whole thing seems scary. If I'm hearing what you're saying, seems they are going to cut you off cold turkey and detox you along with these classes. I also don't know how they expect you to do 8 hour days (I don't care how they break it down, 8 hours is 8 hours). I know you have been praying and I know that no matter what, God will see you through. You have a friend in me Flappsy and I support whatever decision you make and will always be here for you to talk to. I'm sending you {{{{Hugs}}}} and my sincere best wishes that you figure this out. Keep me posted. 💕🙏🏻🌻

Sep 30, 2015 8:26 AM

AlwayZ, thank you so much for making me laugh in regards to the IBS & PFD! I told my hubby this morning, if they take me off the Linzess (planned) ilk go back to not being able to poop for days!!! If their plan was so successful, why aren't more pain clinics doing the same? It started at their MN clinic in 1974. The longest follow up on a patient that they mention as "still successfully med free and pain reduced" is 6 months. Really? Like you I keep remembering the " if it sounds too good to be true it usually is. ". I oppose you and everyone has a good day despite this wacky weather! And if still like to get feedback from others. Thanks again!! 🙏🌼

Sep 30, 2015 8:32 AM

I'm glad I at least gave you a chuckle for the day, Flappsy. How strange the longest follow up they have on a patient after doing this since 1974 is only 6 months. Hmm, kind of odd to me. Look, I wish I had a magic wand I would wave and make everyone feel better and get back to a normal life, I'd do it in a NY minute!! I know God will help you find a way to your decision. Hang in there. I'm right here with you. 💕🙏🏻🌻

Sep 30, 2015 8:40 AM

Please, please, do ya? 😃I want it! Lol🙏🌼

Sep 30, 2015 9:29 AM

If you can make your own team, including the docs that diagnosed you, I would try that. 30,000 dollars is a lot of money. Also, why do they think you could save up that much in 2 years, just wondering. That's about twice as much money as my family makes in a year. 😕😮😨
I have heard that sometimes the rehab clinic works, sometimes it doesn't. I remember meeting my PT and her saying something along the lines of, "yay! I might actually be able to help you! " because with some diagnoses the goals are very different.
If you found out insurance will pay for most of it, then maybe think about the meds. I was concerned about how I'd function without meds, and it turns out the meds made physical therapy bearable. 😂😊
The program in Seattle is based on Boston Children's Hospital methods. I wanted to try local (ish) PT first, and if it failed, I would go talk to insurance peeps.
Good luck to you, finding what you think is the best solution!

Sep 30, 2015 9:38 AM

The more I read, the more I thought "Snake oil salesman, anyone?" I have to agree that they sound kind of fishy. I too would be worried about going off meds like that. I don't know what to think, other than it doesn't sound "above board" to me. I also have to agree with Alwayzinpain in all of the points made. I mean eight hour days, yay many hours of OT & PT and informational classes, all while coming off meds... How are you suppose to retain all that information and keep up physically?

Sep 30, 2015 10:12 PM

Thanks Ferretbandit & Scaryann! My daughter said it sounds like a drug detox program, which doesn't fit since I'm not on anything usually considered for drug rehab. They take 15 new patients every 21 days at $30000... That's a heck of a lot of $$$!

Watching the you tube videos makes sense, as far as the diagnosis of Central Sensitization Syndrome. But they itinerary and the facility itself doesn't fit. My living room and kitchen together are larger than their PT OT address, and these rooms are about 550 square feet together. I hope talking with my regular docs will help me make the right decision. Like my daughter said, "if it is a legit program and they could help you get back your health and back to work, that's reason enough to do it... If you can afford to. That's the big question only my insurance can answer. 🙏🌼

Oct 01, 2015 8:45 PM

So I saw my pcp today. He filled out a form for my disability lawyer. Saw the lawyer yesterday, who said I'm about 15-16 months away from going before a judge.

The pcp wanted to know about Mayo's findings and I have him a copy of all the records. He was glad I don't have MS too, and said the plan for treatment sounds a little extreme, but if I thought it would help and could afford it to go ahead. He also said if I wanted to do PT and OT here then I should return to my Ortho doc for the referral back to where I went last month.

We then discussed the medications Mayo wants to take from me, as suspicion for causing tremors, dizziness, & imbalance. He said I could do it through him. He printed a list of my meds then proceeded to number them 1-12. He told me to start with 1 and move through the numbers, stopping each med for 2 weeks before stopping the next one on the list. I'm to document any symptoms or side effects I experience daily. I asked why did he want me stopping my multivitamin, vitamin D & B12. He said new research has proven vitamins and herbs may actually aggravate or worsen patients health, and there is no benefit to it. I stated, "You put me on the D & B Vitamins a month or so ago because my bloodwork continues to be like in them." His response, "Well they're not that necessary." At least something was accomplished, in getting the lawyers form filled out and knowing he thinks PT & OT here is just as good. Only thing, no one here does the biofeedback here. 🙏🌼

Oct 01, 2015 11:16 PM

Flappy, I've heard you can get biofeedback machines on sale for pretry cheap if you look for them. I've used one before, didn't seem to do anything for me, but I've heard good reports from other people.
I feel like your doc might have read false or misleading information about the herbs and vitamins. You and I have gene mutations, so we need the B vitamins we can get, to compensate. However, you could make a blanket statement that all vitamins are bad, but that wouldn't be true!
Sorry to question everything, I just don't see the point of getting of herbs/vitamins/supplements before prescription meds. I use those to survive, not gabapentin, codeine, Lyrica, Advair, etc. Just my opinion though. I would try the meds most likely to cause side effects first.
Yes, there are times when herbs and vitamins can cause serious side effects, I understand that. So you know where your doctor read this? Besides, herbs like ginger, Tumeric, and garlic are frequently used spices with potential pain killing properties.
I could be totally wrong, just definitely track your symptoms. Good luck to you finding what's best for your body,

Oct 02, 2015 9:04 PM

I agree ferretbandit. We've been under this doc 25+ years but the last 2 he's sending mixed messages. He put me on the B12, D3, & Iron due to bloodwork. We really think he's losing touch with reality and believed anything he reads.

Oct 04, 2015 10:28 AM

Flappsy, I am so sorry you are in the middle of this whirlwind confusion. It's scary when you have been seeing a doctor for 25 years and he gives you information and then he backtracks on a diagnosis he gave you only months before. (Sounds like HE'S the one with dementia!!) You have to decide what is the best for your situation. I know it will become clearer to you with a bit of time. My wish for you is to be better or as best you can be. I wish you less pain and better, happier days. Hang in there, Flappsy, your faith will get you through. As always, you're in my thoughts and prayers.💕🙏🏻🌻

Oct 04, 2015 5:38 PM

Hi Flappsylady 💐🌈🍷🔮

I have read and seen multiple things that say that multivitamins are basically a scam - IF you are a NORMAL person with NO PROBLEMS who eats well and excersizes. Clearly, that statement doesn't apply to those of us here. We take herb and vitamin supplements because we are missing these elements in our bodies for various reasons. I take 500 mg of a Quercetin complex called Cysta MD for its anti-inflammatory benefits. I take a B vitamin complex for neuropathic pain. There are proven benefits to these and MANY others. To just dismiss that is defies understanding and requires willful ignorance.

I want to believe in instant miracles for you, but experience has taught me that there are no instant miracles, only time and perseverance can create miracles, and even those are few and far between.

It reminds me of all of the beliefs and promises that all of my doctors ever have said to me. All I need is this, this, or this and voila! Yeah, no.

My father wanted me to try to convince my stepfather that in order to cure his incurable non-hodgkins Mantle & B cell lymphoma he needed to go to this treatment center in Mexico that purported to be able to cure cancer with a certain type of citrus fruit. Supposedly, the doctor at this center was forced to leave the U.S. to practice in Mexico because the health care industry didn't want the public to know about his "cure." Riiight.

I'm not even going to get into the problems a for-profit healthcare system has caused us.

Anyways, I don't like to take hope away from ppl. I know how it feels. I live without it. But I would be skeptical if I were you. While it might help, this place could worsen your conditions. I don't want to scare you, but going cold turkey on certain meds can also be deadly. Please be careful 😳.

Oct 05, 2015 12:15 AM

Amie, that's just it.... as hard as I try and want to believe going to Mayo might truly work, their whole behavior was more like trying to sell us a timeshare to a condo. When I think about just doing PT/OT here I feel peace, but when I think about going to their program I begin to get nauseous and nervous. It just sounds too good to be true.

Like you, in my past I had too many doctor convince me their procedure was what was best for me... NOT! Now my own PCP is wishy washy on his on instructions, not even two weeks apart. Does anyone know... Can I change PCP's before my disability is decided? I'd love to fire him. We're firing our dentist! She picked at an old filling on my hubby's tooth just before we went to Mayo, and the tooth broke in half down there! He said she wanted him to come in for a crown. Yesterday we got an estimate on the mail for work she submitted to our dental insurance, and I just about stroked. She put in a request for an estimate on not 1 crown, but 9... At the cost of nearly $11,000! My hubby said he'd not be going back to her. And on vitamins, I'm low on every one I take, by a docs orders I should add. I also have a genetic defect where I don't absorb and metabolize B Vitamins, especially folate. I'm on mine because I needed them.

Thank you for your opinion. I really appreciate hearing everyone's! 🙏🌼

Oct 11, 2015 2:13 PM

As for Mayo's diagnosis about my tremors, MS, dizziness, imbalance & such, or rather lack of (other than blaming my meds), my hubby and I were talking about it this morning. He's concerned that with no more than they did, and not asking about my whole history & diagnoses that they've missed something. He said "I live with you and you don't have a medication problem. You struggle to walk a after you've been out awhile. And your hands tremors like crazy when you use it. You also get your words messed up, saying the wrong words or flipping the order of the words, and I think it's more than fibro fog. You may not have dementia but your thought process isn't right. I think they've blown you off because they couldn't diagnose it, so they guessed at it, just like your other doctors. I think the program they want you to go through is a money racket bunk of bull.".

I was surprised because it's the first he's said anything negative since we got back. I asked him if the doc I see this week thinks I should do the Mayo OP program what would he think. He said, " it's not about the cost, you're worth everything to me. But I think they're wrong and their program isn't what you need. You need PT/OT but you don't need the rest. And you can get that here. I think their program is some new fad to put patients through when doctors can't find the answer. After all they really didn't look at the whole you! ".

Wow!!! I'm somewhat in shock. I have to admit I've felt sorry of the same in the same way. Mayo did NOT look at the whole me, yet they want me to go through a treatment program that treats your mind and body and meds. 🙏🌼

Oct 11, 2015 5:23 PM

Good to know that your hubby stands behind you and that he gave you such a strong opinion on the matter, Flappsy. I think that after reading the posts again, he's correct. $30k and no guarantee that you will see any improvement. That's a HUGE leap of faith!! Also, there is no way that you they were looking at you as a whole person and not an illness because if they were looking at YOU and ALL of your diagnosis, they would know there is no way you'd make it through three weeks of rigorous treatment, 8 hours a day in your condition. I don't care how many breaks they offer during the day. I find it so frustrating when a doctor that you've been trusting tells you something and then next time you go there, they are asking where the pain is, etc... It's like, HELLO, is there ANYONE listening to me?!? I hope you find a really good place that offered PT/OT and they are able to help you. Give that hubby of yours a great big {{{{HUG}}}}.. He sure does love you!! Sending {{{{Hugs}}}} your way from me and as always, you'll be in my prayers. 💕🙏🏻🌻

Oct 11, 2015 9:19 PM

Thanks AlwayZ, he really is special. Tomorrow I'll post contradictions between the diagnoses mentioned in my doctors progress notes v/s the diagnosis codes they billed for, and the doc who documented for the therapy program. Once I do... Tell me I'm not just imagining it please. I'm too tired to go get the papers tonight, but honestly they're contradictory., or so it seems. I see my psych doc Tuesday, and I can't wait to hear his response; he doesn't want anyone messaging with my meds he has me on! Goodnight and may you sleep at least 4 hours! 🙏🌼

Oct 12, 2015 9:05 AM

Referred to Mayo by home doc for vertigo & tremor

Mayo 1st visit & doctor: stated to hubby and I, dx possible functional neurological syndrome, something in brain may be responsible for all symptoms, return for tests ...

Dx billed to insurance: Memory Loss, Tremor, & Abnormal Gait & Imbalance; all previously dx by home docs

Mayo 2nd visit, multiple docs: verbal stated dx to hubby & I, chronic pain, abnormal gait/imbalance, & decreased hearing, vertigo/dizziness, abnormal eye movements in evoked potentials tests, medication caused tremors (iatrogenic), described brain malfunctioning (misfiring across the synapses, or miscommunication between hardware & software in brain), sensorineural hearing loss, idiopathic loudness intolerance, auditory-based communication deficit...

Dx billed to insurance: same as 1st bill + Myoclonus, Vestibular Neuronitis, & Headaches

Mayo 3rd visit, OP program doc: verbal dx to hubby and I, "centralized sensitization syndrome", deconditioned body with weakness, IBS (not at Hosp for that), headaches, tremors/iatrogenic due to too many meds or wrong meds, & dizziness/vertigo...

Dx billed to insurance: Headaches.
......Dictated note stated deconditioned body, weakness, joint pain, chronic pain and IBS.

Received insurance letter showing eligible for following treatments: Health & Behavior Intervention; Biofeedback Training, any modality; & Self-caring/Home Management Training (ADLs, meal preparation, safety procedures, use of assistance technology). Letter states, "If you were required but did not get a referral from your primary doctor for this service, your coverage may be at a lower level or not available. This letter does not guarantee payment or represent a treatment decision."... There's no mention of PT & OT directly, or medication management and changes, although that's what the doc said, and their brochure explains.

So from all this I've realized what docs say v/s what they document and/or bill for is never the same. Thank goodness the insurance has paid for all visits up to this point, over $9,000.00 already. And they want me to do this $30K program that may not be covered because my pcp isn't the one who referred me... Hmmm. I think I'll think awhile still...😕💭

What do you all think of all this? 🙏🌼

Oct 12, 2015 9:26 AM

Wow Flappsy that is rediculious, they are crazy. I think I wouldn't be going back. Try and talk to your Dr's at home and get their feedback on what treatments that they can provide you along May's treatment plan.

Oct 12, 2015 11:32 AM

Flappys, just my personal opinion but I would not be going for the rehab clinic if there is no mention of PT or OT. Something just doesn't jive with me on that.

Oct 12, 2015 1:40 PM

Your symptoms definitely seem to fit with the nerve problems in general. Having neuropathy myself, I wouldn't try PT until your pain is slightly managed. For me, DMSO made PT bearable. Without it, my family likely would have been trying to get into a similar 30000 dollar program in Seattle.
Something definitely seems weird about them never mentioning PT.

Oct 12, 2015 2:08 PM

You know, my hubby had always been supportive, so finding out his thoughts yesterday was a real eye opener. I was thinking I should do the program for him. Finding out he thinks it's a sham has been a big relief! I couldn't put my finger on just one thing, but the whole picture from my 1-3 visits just hasn't come together for me. Something just kept nagging at me, but I didn't want him to know because I thought he wanted me to go. The mere fact that they haven't looked at the whole me, all my problems and why I'm on the meds I have... it just wasn't giving me peace. And then these insurance documents and medical records came, and I started putting things together.

In another post last night, I asked AlwayZ ( & anyone else who wanted to) to let me know if I was reading things wrong or not (after I added this info today). I'm glad to hear you both are thinking along the same lines. Thanks 🙏🌼

Oct 12, 2015 6:02 PM

Hi, Flappys, listen to your body.

First, I want to say this has to be super overwhelming for you and i know what that's like. It doesn't make dealing with everything easier especially without any answers only more questions.

Second, my first sentence I mean, what you wrote in one of your posts that when you think of ot/pt you feel calm but when you think of Mayo clinic your stomach gets all tied up in knots (not exactly what you wrote but it made me think). And it made me think of all the times when i had decisions to make and when I felt calm and peaceful and went with that decision, nothing calamitous happened. But whenever I went with the one that tied me all up in knots and made my stomach hurt, calamity followed.

That's just my personal experience. But i addd that in with the fact that those doctors are all over the place and that the DX didn't even stay the same over the last 3 visits. And then they want the price of a luxury Honda civic vehicle (hehe) or a mobile home to treat you yet they can't even age in a diagnosis. I'd be worried too.

And I have been wanting to tell how i felt about this for days since your first posted but I couldn't get my thoughts in order.

The thing about getting your words mixed up, I do that too. It's called aphasia I think. And i know that it can be very frustrating and worrisome. Just wanted to throw that in there.

Listen to your heart, gut, husband and your (physical or occupational) therapist.

To be honest, I won't go to a doctor that i don't trust absolutely. I have waaay too many times been screwed by doctors who haven't listened and I've ended up in the hospital and nearly worse. Since one those things i won't be the same again.

Sending you calm and hope during this time of decision making. You know what's best for you. Sorry to say but from the info I've read, It sounds like those doctors know what's best for their pocketbook. But not you and all your "you - ness", your individuality and how all your illnesses affect one another. Many hugs 💕💞💕

Oct 12, 2015 8:08 PM

Kitty26, thank you. I feel like you explained the turmoil I have better than I did. And thank you for so much thought to your advice. You're right. When I follow a decision I'm peaceful with it goes as smooth as silk. But when I'm in turmoil and do it anyway, I usually end up making a mistake.

When my hubby came home we talked and we've decided we won't go back for Mayo's program. Instead I'm providing the records from Mayo to necessary docs, those who can provide the same or similar treatment Mayo would. Like my Ortho, PCP, pain specialist, and psych docs. Praying they will agree to do treatments here instead. Who knows, maybe there is a place locally that can do it all, or at least most of it. It sure would save us a lot of money, and me a lot-lot-lot of stress.

It's so wonderful to be able to discuss situations like this with others who truly understand. Thank you everyone as you've followed, suggested, advised, or just hugged &/or prayed for me! Praying for blessings on you all! 🙏🌼

Oct 12, 2015 8:42 PM

Oh my sweet sweet friend (at least that's how I think of you 😼) I am so glad that you are going with your gut and your heart (and what i wrote made sense hehe. I was kind of afraid i would sound crazy(er) ).

I hope that your doctors can do everything locally as well or as close to local as possible. I completely understand that need.

I am glad that you have such a supportive husband (and I can't say for your situation but I know that my significant other is as supportive as he can be. I mean if it's overwhelming for me, I can't imagine what it is for our loved ones especially the ones who can't stand to see us in pain (which logically all loved ones should feel that way..... But I am going offf on a tangent).) anyway, awesome on the support! And I'll be thinking and praying for your medical team to put their heads together and get things sorted out.

Many hugs and prayers 💕💕💖

Oct 12, 2015 9:47 PM

I have a sidebar. I use to be a dental assistant back in the 80's the dentist I worked for used to tell me he wanted to put in a new bathroom floor so he needed to do more crowns. I had worked for other dentists that never said something like that. But the dentist picking at the tooth sounds like she might be looking to do some home renovations.

Oct 12, 2015 9:57 PM

Kitty26, I think of you and so many I've got close to as new friends. Thanks to you & everyone for being here to help! And tangents... We all do that. Lol 😡. My hubby is ticked at the partial documentation, where they stated only half of what he or I said (but not the whole statement). It looks like they grabbed certain things and ran with them so it would fit their criteria for the program. My hubby really got mad that the Neuro-psychologist stated she believes I have a drug problem... Omg! She must not have bothered to look at what I'm on, or what major pain meds I'm allergic to, a very long list. My meds are predominately asthma, allergies, sjogrens, & thyroid. Oh, and the antidepressant & anxiety, needed to deal with docs like that... Lol. 😵 Sweet dreams and blessings! 🙏🌼

Oct 12, 2015 10:04 PM

EquineSister, that's exactly what I told my hubby. He's going elsewhere for a crown to repair it, and to get evaluated for all the other things she's saying needs to be done. We won't either one go back to her. Back in the spring she made some comment about not getting reimbursed by insurance companies for what it really costs her to treat her patients, as if we should be grateful for her charity. Uh no! She's under a contract to accept what the insurance pays her & what they say we owe, so no charity there. She's married to some lawyer and yes they are very wealthy. She takes her staff on cruises. Oh wait, maybe that's why my hubby needs all that work? Not happening! Lol 🙏🌼

Oct 13, 2015 3:24 PM

So I went to my psychiatrist today for meds review. He said there are a number of meds I use that could be responsible for my tremors, but in his opinion it would more likely be a new med. I started 4 meds before tremors started, and I'm no longer on 2 of them. He said the key is that even if I come off all my meds there's no guarantee I won't still have my tremors. He also said I could have my meds changed, and the new meds could also cause of worsen my tremors. His plan is not to change my antidepressant or anxiety meds, unleased the Mayo doc gets in touch with him and suggested specific replacement meds.

He suggested I do start counseling with a psychologist because I know my anxiety is getting worse. He added I'm dealing with a lot and would benefit from therapy, and it would be like counseling from Mayo except that it would be one on one, not group. I agreed to find a psych counselor. Wishing everyone a blessed, quiet, and painless as possible day & night! 🙏🌼

Oct 13, 2015 5:37 PM

I know I haven't posted till now, but I have been following. I am glad and relieved that you decided to stay and get treatment home. Your husband is an awesome man very caring and understanding. You have my thoughts and prayers. Also praying you have a pain free day as possible and you can get some sleep. God Bless Flappys.🙏😘💕

Oct 13, 2015 9:01 PM

Thank you Moparmom. It means so much to have found this community and meet all the new friends, like you, AlwayZ, Weezie, Eddieray, Profiler, EquineSister, Kitty26, Ferretbandit, Amandamiddleton, Scaryann, Amieleblanc, ... And omg, I know many others but the fog just put up a cloud ☁ block! Lol. 😱 I'll think of the names just when i start to drift off to sleep. Anyway, it's great to be able to voice our thoughts, even when torn between decisions, and get feedback from everyone, from others who understand. It's been a bumpy stressful few weeks juggling back and forth what to do. I think getting the records and bills, and talking with you all, and my psychiatrist; it helped put it into perspective.

Wishing everyone a very peaceful night. Turning in early as my hubby had a colonoscopy early in the morning. Oooh, fun! 🙏🌼

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