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NCFred

Local MDS or center of excellence 1 1/2 hours away? Your thoughts

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I go to the MDS every 6 months.

As for which MDS to go to, that's hard to say on the internet.  Assuming they are both good doctors and up on the latest info, I would go to the closer one.  The "gold standard of treatment" hasn't changed in many decades and I'm not sure what would be gained by driving the extra miles.

The best treatment advice you'll get from any doctor is EXERCISE! 

 

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Hi NCFred,

The first few years my MDS was scheduling me every 4-5 months.  I traveled 6 hours roundtrip.  Looking back, I think it was excessive as my progression was slow.  It really depends on your symptoms and progression.  If you are managing well with your current treatment, there is little to be gained by frequent appointments.  If I had it to do over I would have allowed them to schedule me a follow-up but cancelled if things were going well.  Welcome to the forum.  Gardener

 

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It also depends on if you are interested in getting involved in research. I would think the centers may have more opportunities....you can look into that if that interests you.

No right or wrong answer If it's an MDS and you like them. 

Start exercising if you don't already. Don't get hung up on what's the right way...just do something you like to get moving!

 

LAD

Edited by LAD
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I see a neurologist every 12 months and any time in between visits if there is a problem with my meds.

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I live about 1.5 hrs from my MDS.  I chose that for a few reasons. I felt they were better and were a center of excellence.

One big reason was that for 30 years I have worked in the same building as the neurologist so I know everyone that works there.  I am a private person and didnt

want to run into people that ask me why i walk funny ect.. I dont like people knowing my business.

As things progress I may have to move closer to home but for now it has worked out fine

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I wish to thank everyone for their  comments. This is all very new to me.  I have several questions. Gardener, I noticed you were on tradazone at 100 mg for sleep, what is tradazone?

SWVA, I noticed you are taking 

4.5 Sinemet CR 25/100 per Day
2.5 mg Isradipine twice a day,

could you explain what the drugs are? and why you are taking 2 of them.?

Thank you, Fred.

 

 

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Hi Fred,

Trazadone has been around for a long time and was used as an antidepressant but is now more commonly prescribed for insomnia.  It has been a life saver for me and since starting it I have been getting 6-8 hours of sleep.  Gardener

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Do you have any side effects and when do take it

o have been taking 50 and I feel groggy the next day 

i also feels like it doesn’t kick in very quickly 

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Fellow Parkies, you already know this, so it's just a reminder:  Always good to check out doctors thoroughly by doing an on-line search.

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Hi Linda,

Good advice. I'm skeptical of anything from Marty Hinz, MD. See below from Dr. Okun

This is a public report written about Hinz and his company that appeared recently (Star Tribune) and details some of the companies claims and actions taken by the FDA.  Apparently, the FDA had major concerns over the marketing techniques but you should read and decide for yourself:   

http://www.startribune.com/fda-acts-against-duluth-firm-selling-dietary-supplements/129808958/

FDA acts against Duluth firm selling dietary supplements

The company has agreed to change its marketing tactics. 
By Jennifer Bjorhus Star Tribune
 
DECEMBER 27, 2011 — 12:03PM
 

A Duluth company has agreed to stop making unproven medical claims about the amino acid dietary supplements it sells after the Food and Drug Administration filed for an injunction.

West Duluth Distribution Co., doing business as CHK Nutrition and NeuroResearch Clinics Inc., has been making drug-like claims that its amino acid capsules and powders can treat and cure various diseases, without the required regulatory approvals for a new drug, the Food and Drug Administration (FDA) said Wednesday.

The companies' owners, Martin C. Hinz of Florida and his daughter Amy Gunthert-Hinz of Duluth, signed a consent decree Tuesday agreeing to change their marketing tactics. There's been no accusations that anyone's been hurt by the products, said lawyer Mark DuVal, a regulatory expert the companies hired.

Their attorney Josiah Lamb said neither Hinz nor his daughter would comment. In a statement, CHK said its products are safe and effective.

"We have been in contact with representatives of the FDA, and we expect to resolve this matter shortly by making appropriate changes to our promotional materials and resume selling," it said.

Hinz could not immediately be reached for comment. DuVal described him as a well-known speaker and writer on the benefits of taking amino acid supplements. Hinz holds an active medical license in Minnesota, where he attended the University of Minnesota Medical School, according to the Minnesota Board of Medical Practice.

However, the board has taken several disciplinary actions against him, starting in 1996 when it suspended his license after he was hospitalized in Duluth for bipolar disorder with sleep deprivation. Later actions show continued concern over his ability to practice. It suspended his license again in 2001 after a skills audit "identified concerns with [his] medical knowledge, prescribing practices, competency, and recordkeeping," but stayed the suspension contingent on his full compliance with the terms, provisions and deadlines set by the board. The license was reinstated in 2005.

One of the things the FDA objected to was a link on CHK Nutrition's website to NeuroResearch Clinics' website where there were discussions about "amino-acid therapy" for treating such ailments as Parkinson's disease, Alzheimer's, depression and attention-deficit disorder. The FDA said it warned the company to stop making unapproved drug claims, but it didn't.

DuVal said he was sympathetic to the FDA's mission to stop "elixir salesmen." But he accused the agency of being overzealous in its attempts to regulate the ill-defined field of dietary supplements and probiotics, which includes encapsulated microorganisms such as those found in yogurt.

"It's a huge issue," DuVal said. "It's an emerging field, but it's an important one because that's where society is going. We're relying less on traditional Western medicine, which is reactive, and we're trying to be more proactive about our health."

CHK Nutrition is the latest Minnesota supplements company the FDA has hit.

In June, the FDA accused an Eden Prairie firm called UAS Laboratories of making unproven medical claims about its probiotic products, and U.S. marshals raided the company, seizing more than 80 cases of its products. In that case, the company also agreed to change its advertising, website and labels, said DuVal, who also represents that company.

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This was the case:  https://www.casewatch.org/board/med/hinz/HINZ, Martin C 5-12-01.pdf

Wow. Dr. Hinz had serious problems with his medical license in Minnesota. He had to pay thousands in fines and undergo lots of training to get it back. The link gives lots of details about patients under his care.

This was the reinstatment:  https://bmp.hlb.state.mn.us/disc/HINZ, Martin C (PY31670)/HINZ, Martin C 3-12-05.pdf

 

 

Edited by Superdecooper
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I don't know. He certainly is spamming the board by posting links to his business trying to get new patients. That seems like it should be a violation of the rules. It certainly doesn't promote a free exchange of ideas among PD patients when a poster is promoting his own treatments that have not been proven to be effective. I guess if they allow him to continue disrupting the board, NPF would be tacitly approving his behavior and product. 

Next up: snake oil salesmen 

-S 

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I think if we all contact Admin ASAP, they will boot this guy off when they see what he's doing.  Two of us have done so, but it will help if more do the same.  Thanks.

 

Edited by Linda Garren

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21 minutes ago, Linda Garren said:

I think if we all contact Admin ASAP, they will boot this guy off when they see what he's doing.  Two of us have done so, but it will help if more do the same.  Thanks.

 

I reported one of his posts to administrator

 

LAD

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I've come to realize going to the doctor so far is a no win .Well the doctor does get paid but not much benefit for the patient.As far as center of excellence labels dont be fooled.In all my appointments with them never did they read my patient questionnaire .

My personal solution to our poor care is to have patients band together and form a true patient organization and hire our own physicians  to advise us.

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I reported the spam posts too. Hope the administrators do something quickly. This could steer people in the wrong direction. Thank you so much for all the links with info on Dr. Hinz. 

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I don’t have the time to do a complete investigation of Dr Hinz, plus my area of journalism is national politics, business and tax. 

But if I were going to, I’d start by checking the local better business bureau, chamber of commerce, Federal Trade Commission and the state medical boards and courts. 

I’d also do a larger internet search to find out what other websites and businesses he is connected with and whether those have links to companies that have run afoul of state and local authorities. 

But I don’t have time to waste. I just want him to stop spamming the message boards. 

Im just trying to learn from others how to deal with Parkinson’s Disease so I can get on with my life. 

-S

 

Edited by Superdecooper

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