Corrupt medicine on both sides of the Atlantic, my wife suffers, no one cares

[DFW]

Well, obviously I care and our family does, but her doctors don't and big Pharma doesn't either.

I haven't made a big deal of this, but she suffers heavily from restless legs syndrome, as do many women. If you don't know what that is, it is like having a swarm of fire ants running up and down the interior of the veins and arteries in your legs. No matter HOW tired you are, you can't sleep, or even lie down. It is torture.

She had a prescription of dopamine recently, but was warned (correctly) that it had side effects (bladder and heart disruption) and the effects would diminish with time anyway.

Recently her GP prescribed a shoulder patch for her with some kind of time-release medication. Wonder of wonders--it worked!! Her symptoms and bad side effects are gone.

BUT.....here in Germany, doctors can only prescribe a certain amount of any medication and still have it covered by insurance. If they go over the amount, the patient has to pay for it out of pocket, or get it prescribed by another doctor. She is trying to get another doctor to prescribe it, but her neurologist said, "you're another doctor's patient, get him to prescribe it for you. Go away." So she is now trying to get a spot in a specialty clinic in Göttingen that handles this kind of thing, but she is on insurance, and not "privat (i.e. pays up front)," which means "second class patient" in Germany. Her last patch runs out in 4 days, and she is not looking forward for the torture starting up again. The clinic won't take her unless her GP gives her a "transfer order," and he says he might do it and might not. He's in no rush, as there's no money in it for him. The German system works--sometimes.

We were thinking of trying to find the patches in the States, but German Pharma companies are pulling out of the US market one after the other. US Pharma companies are supporting huge lawsuits and claims payouts against German Pharma companies, hoping the huge money awards will discourage them from offering their products in the US market, so the US Pharma firms can jack up their prices to astronomical levels once they have no more competition.

So, in 4 days, either we find SOMEONE who will prescribe the patches for her, or she goes back to sleepless nights. The patches are expensive if we pay for them ourselves. Maybe $300 to $400 a month, IF her doctor gets around to prescribing them (no money in it for him any more, so he doesn't care). I don't care. I'll gladly pay it if I have to, but how many normal people can afford that?

I'm telling you, I'm beginning to understand why some people blow up buildings. I can afford not to, but $400 a month? How many normal people can afford THAT as a supplemental expense? This is corruption and torture on an international scale, and it's happening right under all our noses. I know books have been written about it, TV exposés have been broadcast, etc., but NOTHING HAPPENS. Germany is not always the medical paradise it is sometimes made out to be.

[tridim]

1. Has she tried Cannabis?

I know several people that have no restless leg symptoms after a singe puff right before bed.

Don't blow up a building, just buy some weed.

[DFW]

3. Neither of us smoke.

We both gag. Not an option, I'm afraid.

[Dont call me Shirley]

13. Try edibles

[eShirl]

35. yes, or vaporizing (like ecigarette for cannabis)

[RandiFan1290]

54. It is sad how many will avoid cannabis only because of stereotypes

and the thought that they have to smoke.

So many stories of children being helped by cannabis in the media and it is amazing how many people think they are giving joints to the kids to smoke.

We still have a long way to go.

Cannabis oil pills

[DFW]

59. Well, that plus one more minor detail

Germany hasn't legalized it yet!

[Go Vols]

63. Maybe this route

In Germany, growing cannabis for medical purposes has been legal since May 2011. Before then, special permits from the Federal Institute for Drugs and Medical Devices had to be obtained.

Cannabis-containing drugs are usually prescribed as a finished product with cannabis extract added, such as a spray. The medicine is sprayed into the oral cavity. From there it spreads rapidly in the blood.

http://www.dw.de/cannabis-gains-acceptance-as-medicinal-product-in-germany/a-17766339

[DFW]

67. Can't hurt to ask, thanks! N/T

[elleng]

2. The.non-system.here.is.bad.for.many,

but.those.docs.attitudes.you.describe.are.horrendous!

PRESCRIBE.the.darn.stuff!

[DFW]

4. In Germany, many doctors have a phrase they can recite in their sleep

The second a patient starts to protest about ANYTHING, the doctor says, "Who is the doctor here, you or me?"

You are not allowed to practice medicine in Germany unless you can say that in your sleep. (We're pretty sure, anyway)

[elleng]

7. Sorry.to.say.you.are.confirming.my.thinking/feeling

about.German.people.

[DFW]

40. It's not the German people per se. It's the medical profession.

My wife is German, and our best friends here are German. You will find no more loyal, helpful, smart, reliable or compassionate group of people here than our friends, and you would be hard-put to find a more pacifist nation in Europe. The lessons of the last century are taught intensely here, and with good reason. Almost no family here got out of 1945 without some loss of family members, residence, home, or limbs. My father-in-law was drafted off his farm at age 17, and returned from the Russian front minus a leg at age 18. His only wish was that his grandchildren were all girls so they would never have to serve in the military (he got his wish). Compare THAT to the American south. I promise you, it's not the Germans per se.

The neo-Nazi "Republikaner," when they were formed in the 1980s, got 1% or less of the vote, and now don't even make the radar any more. They called themselves "die Republikaner" because the Nazi party is banned here by law, and they needed a name, which they found right in Reagan's America. Compare their acceptance in Germany with their namesakes in the United States. In the words of my old friend, Stan Lee, "'Nuff said."

[elleng]

64. Thanks,DFW,

and.best.to.you.and.your.dear.wife.

[Dont call me Shirley]

15. Doctors in the US do the exact same thing AND then they tell you to see a psychiatrist.

[LiberalAndProud]

5. Doesn't Germany have a two-tier system

wherein you can buy private health insurance (better than public)?

I saw the idea debated here when the ACA was under discussion, and wondered if this kind of situation would be the upshot. I'm so sorry you're having trouble getting the meds. Can you contact the manufacturer for help? Sometimes they will.

[DFW]

8. Yes, but it's complicated

If you go over a certain income level, you HAVE to take the "private" insurance, but like in the USA, they can refuse to cover anything they want to arbitrarily, and it's not cheap, something like €2500 a month.

Normal mortals are shoved into one of the "Kassen," which means you are insured for most (but not all by a long shot) things, and are always shoved to the back of the line. Call for a cardiologist. New Patient? Let me see. We have an opening in 6 months. Oh, you might be dead by then? Well, then we'll move it up to five months, how about that?

The thing she has was invented in Groningen in the Netherlands. We are looking into going there directly.

[JDPriestly]

17. The insurance in Germany is not necessarily government-run.

There are up to 170 companies providing health insurance in Germany. Services and prices of public policies and private options vary considerably.

The premiums for public health insurance are fixed at a certain percentage of your income. This leads to a lot of competition for providing different services among healthcare providers. However, legal regulations ensure some basic coverage.

You can always add optional services, which makes a thorough comparison of all companies rather complex. For example, some insurers include travel insurance outside the European Union or reimbursements for alternative medicine. Other providers offer benefits and reimbursements if you participate in preventative programs and regular checkups.

One of the most important decisions is the choice between public and private healthcare plans. Several factors play a significant role:

your age
your legal status and family situation
your salary and occupation
the intended duration of your stay
the services and benefits you prefer

http://www.internations.org/germany-expats/guide/15986-health-insurance/health-insurance-in-germany-15998

Maybe you can shop for a better insurance plan.

[DFW]

41. She'S 62 and a cancer victim

No new insurance carrier will touch her, even though she's been in remission for 13 years now.

[CaliforniaPeggy]

6. Oh boy, my dear DFW, I am so sorry to hear this.

The system sure is corrupt when doctors aren't compassionate towards their suffering patients.

[DFW]

9. I will say this for my doctors in the States

My dentist, my GP and my Texas cardiologost are all friendly, conscientious warm-hearted people.

My doctors in Germany are competent, but (except for the cardiologist and my ear surgeon) unfeeling machines. Compassion isn't taught in medical school here, except as something to be avoided.

[CaliforniaPeggy]

10. That just sucks. Hugs to you both! n/t

[JDPriestly]

16. Can you go to France? The French doctors were wonderful to me. You would need to check

first as to whether they would accept your German insurance -- and whether you need insurance at all. Be sure to check first. Don't take anything for granted.

[DFW]

42. No, we're stuck in Germany. The trips to France would have cost more anyhow.

The trouble is that ALL the insurers are over their heads in payments, and they can't handle their obligations as it is. As long as the pharma companies can charge whatever they feel like, this won't change.

I get it that development costs for new medical breakthroughs are expensive, and sometimes produce spectacular results. I get it that the people who succeed in these endeavors expect more in remuneration than a medal around their necks. Hell, you cure cancer, and I EXPECT you to become an overnight billionaire. But the pharma companies do not need to milk the world for extra billions over and above a reasonable return. Do their CEOs REALLY need more than one Lear jet?

[JDPriestly]

56. We have the same problem here.

[DFW]

58. Let me guess

You are more than a 55 minute plane flight from Paris, right?

[BrotherIvan]

11. This may sound strange

But I know a lot of people suffering from restless leg syndrome and insomnia do very well with an elimination diet (Whole 30 or Paleo) and magnesium high dose supplementation. This way you will find out what the triggers are such as wheat (likely) corn, dairy, eggs and possibly nightshades (tomatoes, eggplant, potato). You may have tried it, but if not, it is definitely worth a shot. I know personally many people who suffered from a whole host of strange symptoms such as anxiety, autoimmune diseases and migraines who were better in less than a month.

There are tons of articles and testimonials about it. So I won't link them all here. It is said that RLS is related to inflammation and magnesium deficiency (she may also have heart palpitations). There is a product called CALM powder and you can also add Magnesium Oil which is transdermal and doesn't lead to bathroom issues.

http://www.easypaleo.com/tag/restless-leg-syndrome/

I had very bad joint pain and muscle cramps and soreness. Whenever I clean up my diet, I feel amazing. I do supplement with Magnesium as well, but the diet does most of the work. No medications and much much cheaper.

I know the woo warriors of DU will jump all over me for this, but it certainly is better to try than going broke. And it has zero side effects.

[Holly_Hobby]

19. My husband's restless legs was cured with

a change to a Mediterranean diet and 1/4 teaspoon of magnesium citrate at night. He suffered with it for over 40 years, and it was cured in 4 days. He eats greek salads, gyros, hummus and veggies, etc. No more junk food diet.

Most of us are magnesium deficient, the soil is depleted nearly everywhere. His daily headaches went away too.

[BrotherIvan]

23. Yes, we are very deficient

It's also the water. For a while, we were getting Noah's water which is from Northern California and known for its high levels of magnesium. It tasted almost sweet, as some people describe well water.

I figured out my problem from going into the ocean. Whenever I had been in the ocean for a day, my body felt WONDERFUL, all the aches and pains were gone for a few days. So this wasn't aging or permanent. I concentrate quite a bit on minerals, celtic salt, dessicated liver, probiotics and cod liver oil and do not really take any other vitamins. It is totally worth it as I don't have to pay for doctor's bills and take no prescriptions.

[KoKo]

21. Neutroceuticals ...Homeopathy does work for some people......

I have a few friends who swear by them. But, finding competent Physicians....is complicated. And, I'm skeptical...but, also working in the Pharma Field....I realize not all is well with the Meds we are Prescribed. Some are too new..recently approved..that are just remakes of original meds that worked well but Big Pharma reformulates (doing it in China/India) and what you get might have "other consequences." Penicillin and other older Drugs work for those who aren't allergic or have resistance to it from history of using it....but, they don't take that history and patients can't often remember. So you get some new high powered drug that makes you sicker than when you went in there for something that old drug could have helped you with. And on others it works..

It's complicated. And, YES there are wonderful New Drugs for complicated situations that work for some...but, cause problems for others.

So....there's that to deal with...

[BrotherIvan]

24. Yes, it's more neutraceuticals than homeopathy

I have seen the incredible effects from changing one's diet and adding in exercise and sunlight. Pretty much what the human body was meant to do. People are really afraid to try it, but once they do, the effects are amazing. But I do admit it is difficult to remain 100% and you have to find your hacks to keep it on track when going out to eat.

[DFW]

43. She has tried magnesium, still takes supplements

That about the diet is new, and I will pass it on to her. At this point, she is open to any suggestion that does not involve amputation at the waist.

[BrotherIvan]

57. There are a few sites to read about it

But the easiest to jump into is http://www.marksdailyapple.com/ to read about diet guidelines. It may sound restrictive, but if you or your wife likes to cook, you'll be shocked at how delicious everything is. The testimonials of people who started just to lose weight and then cured a whole host of illnesses their doctors could do nothing about is very compelling.

There is a thread of people discussing RLS in the comments and what worked for them. The one about supplementing with iron makes sense as doctors are not prescribing that any more as they used to in favor of other (incredibly expensive) medicines. Also if she has a desk job, consider a standing desk or at least a schedule to get up and move around every hour as that might be a contributing factor.

http://www.marksdailyapple.com/soda-alternatives/#axzz3DUbDFSTJ

Being in Germany, it may be difficult to stay away from delicious pastries and bread, but I would bet that wheat is the culprit. The good news is that corn and soy should not be the same problem it is in the US. And if you drink soy milk, that definitely has to go. You might be able to get good dairy that is difficult to get here so that might not be restricted for you (we use raw milk/cream as that is the closest to real milk, but the dairy in Europe is generally pastured and without drugs, so check it out). Be very strict the first month so you can really see the difference. But this in no way means being hungry, it just means a little treat of the restricted foods is not good.

Good luck to you and your wife. I know what it's like to battle insurance and doctors and it is awful. I hope it clears up for her quickly.

[steve2470]

12. I am very sorry to hear this

I hope your wife gets affordable and easy relief soon. It seems the system, in both Germany and in the US, is built for the enrichment of the medical device manufacturers/Big Pharma/some of the doctors.

[DFW]

44. There are very few really rich doctors in Germany

Some specialists maybe, but GPs or ENTs etc, are not the big earners they are in the States. They do OK, but it's a different scale.

[JDPriestly]

14. Your doctor needs to appeal that decision. We were able to get very expensive, experimental

medications for our very young daughter in Austria.

Has anyone talked to your wife about magnesium or physical therapy. I do an exercise that strengthens my abdominal muscles but also helps my restless legs. I know it is a terrible affliction.

Here, too, if you are on Medicare, you get into the donut hole and medications that just don't seem to merit the price can be extremely expensive.

There are certain areas of medicine, especially regarding conditions with the skin and things like restless legs about which doctors seem to be able to do very little. I have the impression that the science just isn't there.

[DFW]

45. The science may be there, but the will to use it is not

This is mostly a women's affliction (not exclusively), and doctors are mostly men. It took literally YEARS before my wife's doctor took her seriously (same attitude went for Lyme disease, for example). If they weren't used to it as an affliction, as far as they were concerned, it didn't exist. RL is FINALLY recognized here, as a genuine affliction, as is Lyme disease. But treatment and the research to advance treatment is sorely lacking.

Lyme disease used to only appear as far north as the Balkans, and only in recent years (thank you global warming) have enough cases--including my younger daughter--occurred in Germany to warrant treating it as a "common" affliction. My wife had a client (she was a social worker) who had all the symptoms of Lyme disease, but her doctor wouldn't consider it as a possibility. My wife continued to insist, and finally the woman's doctor agreed to test her for Lyme disease just to get my wife's nagging off his back. He was floored when the diagnosis came back as Lyme disease. He did not apologize.

[JDPriestly]

55. I have restless legs. Magnesium, and there is a little in chocolate, helps me.

[shireen]

18. i really feel for her

I have two sleep disorders that have severely disrupted my life. Chronic sleep loss is a nightmare, so i understand how terrified she feels.

I really hope you find those patches in time. Meanwhile, have you tried Lyrica? I use it for neuropathic pain caused by Lupus. Restless leg syn. has neurological causes so it might help her too.

Please let us know how things work out.

[DFW]

46. I don't know what Lyrica is.

I'll see if I can find a German generic name for it. The names for the same medicine are often completely different.

What we call "Lipitor" in the States is called "Sortis" in Germany. I have no idea why.

[KoKo]

20. It's the downside of "Universal Health Care," it seems, then...

The systems get to the point where "minimum care" is what is covered. If you have means then they assume you can afford the $400.00 a month.

What I've read in International News is that Europe (particularly GB) is now placing severe restrictions on it's Universal Health Care Coverage (what we were hoping for with "Single Payer" here in the US) and that their Austerity Programs are causing cuts in their National Health Care System.

Which you seem to verify that it's going over there to "If you can afford to Pay....You Pay" but, if you can't you suffer from the leg cramps or whatever med problem you have.

Correct me if I am wrong in my reading of the Euro System (valued as model for Single Payer Advocates here in USA) going down and cutting off people is wrong. Remember, I only get International News in English so I miss much of what Google Translate or a person who speaks languages can read.

But...my overall impression is that in the "Western World" the emphasis is on "bottom line coverage for all" means that if you aren't poverty stricken you will be asked to pay more for "Experimental Medication" (like your wife's patch) until the National Health System in Europe or the ACA here in America can find a way to get "experimental medicines" under the Coverage Umbrella? And, that takes time with new medicines..so that Regulatory Agencies can prove they are safe enough or provide enough benefit to approve.

Yet...we read that Big Pharma pays off our Regulators here in the USA to only give coverage to the most profitable older drugs of Big Pharma ....and that regulatory review will take longer for the newer drugs and that is for the Safety of the Patient. Those who want to go with "Experimental" or outside drugs like Natural or Homeopathic Remedies will pay out of pocket for the privilege.



On Edit..I wish the best for your wife. It's not a good thing to deal with what she is dealing with and I hope it all works out for you both.

[JVS]

22. Germany's system is not single payer. They use mandatory private insurance

It's very similar to what we're in the process of instituting in the US.

[KoKo]

25. Then it's upping your tier of service? Buying Extra..?

Already Medicare here in the USA has people buying "Advantage Policies" costing extra provided by Public Insurers like Blue Cross, etc....so DFW needs to just upgrade his insurance by adding a Private Insurer in Germany?

That might be a solution for him...but, assume he would be aware of that?

[DFW]

60. We have to keep it separate

My wife is a German citizen, falls under the German insurance system (Barmer Ersatzkasse in her case).

I am an American citizen, working for a US employer and insured by Blue Cross. My wife isn't covered by that.

In Germany, crossing to a private insurer is a one-way street. You can never go back. If we go to the private system in Germany, it's about $6500 a month for the two of us. I'm not a poverty case, but THAT would be one very large pill to swallow, and you're STILL at the mercy of the private insurer who can always say, after the fact, of course, "oh, we don't cover THAT expense."

[DFW]

48. There is no Euro System as far as medical care goes

That is only a single currency system. Each country still has its own system of medical care. There are still several hundred thousand people in Germany with no medical insurance at all. Normally, this shouldn't be, but in Germany , it is not automatic. You have to be active and seek out whatever you can get if you have no income of your own. It's there, but it doesn't come to your door. Germany has a complicated patchwork system that takes care of most everyone somehow or other, but each citizen must either take the initiative, or have a social worker help them do it (this is part of what my wife did).

[daredtowork]

26. On my 3rd week without meds/coverage

Yes it is torture. I was taking 2 different neuro meds that were abruptly cut off because, ironically, I needed to do some work to get basic necessities while on welfare for disability. The very treatments that enabled me to work and were giving me an option other than a future on SSI were violently ripped away from me. Next time a politician tells someone on welfare to "get a job", that person should say:"Sure if you want me to immediately lose my housing and medical coverage, lose that job, and become a permanent burden to thd taxpayer."

Currently Social Services, Covered California, and my medical clinic are all pointing at each other for how I was de-enrolled. I am not in the Medi-Cal database at all anymore (though I have a card and was dealing with Medi-Cal up until Sept.2) so it is like I never applied and it is unclear who I can appeal to. On Saturday I got a letter to set a date for a court hearing.

I am suffering a lot here. Not just because of the meds. Important specialist appointments, including injections to preserve my vision, had to be cancelled. A Medi-Cal denial I wanted to appeal was messed up. A referral to a clinical trial that I had been jumping through hoops for 2 months was messed up. My CPAP machine is from Medi-Cal - I'm waiting for someone to take it back. My coordination is way off and in theory I could have a seizure. I wish I could predict that so I could be in the most politically embarrassing place possible if that happens.

When people on welfare lose their "mandated" coverage in California, there is no fall back coverage. When I attempted to see a social worker at my medical clinic about my situation, they could only put me on a one day visit plan that would charge $45!!!!! Welfare in my couny does not include direct cash income!

When I tried to tell DU about this, I got 4 recs in General Discussion and only 2 in California. The withholding of recognition is icy cold. Part of the problem is the automatic rejection of welfare as an issue: people don't realize that's the last stop before homelessness for "regular folks" caught in the 3 year application backlog for SSI/SSDI and VA Disability. The Affordable Care Act was a way for some people, like me, to exit the whole crushing cycle.

Instead I was thrown into the cruelest sort of trap. Two months ago when I felt like a viable working person for the first time in a decade, l set the bureaucratic wheels in motion that will deprive me of the disability portion of welfare that is keeping me housed. But thanks to being deprived of Medi-Cal, I feel like crap and it's getting worse. I don't know how long it will take for the meds to build back up and to get back where I was.

This seems like a DU thing - an important failure in our current health care compromise and a reason we need seamless universal health care. Yet DU's silence in regard to both my suffering and the larger issue at stake - the power of decent health care to lift people out of disability-determined poverty - has been deafening.

[MannyGoldstein]

28. That's a crazy situation - my heart goes out to you

Many neuro meds have a backlash if they are abruptly withdrawn, that makes it doubly awful.

I keep reading about the miracle of universal coverage we have through ObamaCare. I'm not sure who's smoking what.

Good luck. Maybe it's time to move to Canada - more jobs, and a health care system that's not appaling.

[daredtowork]

31. thanks, it's really awful

My coordination is totally off - like totally swimming. My skin feels like it's burning all the time: that's secondary from the meds, not from my original problem. The drugs were to treat tremor and peripheral neuropathy (stiffness, pain when walking, and a range of related symptoms) - all of that is back. Some symptoms are back worse. For instance, I used to often sneeze if I felt full after eating ("snatiation&quot . I got indirect proof that was part of the nerve problem because the neuro drugs totally cured that. Now almost anything I eat makes me sneeze!!! I'm getting sporadic tinnitus, too. Oh, and the hand with the most noticeable tremor hurts like a son of a b.

There is no end in sight.

Just a few weeks ago I felt like a normal person and was looking at re-entering the mainstream workforce, and falling on my knees thanking Obamacare.

This problem wasn't caused by Obamacare. It was caused by Social Services. I tried to start to work and earn some money (click on my sig to see what happened there) and the policy in Oakland, CA is to totally destroy your life with nuclear weapons if you do so. The elimination of medical care was just the latest in their ultimate scorched earth policy against the poor.

The sad thing is what happened to me is written into POLICY - I'm not some outlier here. It's only discoverable because I've tried to challenge it, and I have the voice to do it.

[shireen]

65. Sorry to hear about your situation

Pain and discomfort really wears you out. I know the feeling. But I'm one of the lucky ones because I have a fair amount of it controlled with meds to make work possible. If I were to lose it all like you did, I don't think I would want to live. The pain and weakness are overwhelming.

I did not see your original post because I don't regularly read DU. There are so many posts! If a post moves past the first page of General Discussion, it's easy to miss. Sometimes, I go straight to the groups. Sometimes, I scan names to look for posters I like a lot (like DFW) and not the post titles. I'm hardly ever at the Lounge.

A lot of people do care about your situation but I think they simply did not see your post. I think it's about timing, posting when there are many eyes looking at the content. When there are more people reading a post and responding to it, it tends to float to the top. It would be interesting to see some analytics from the admins, like what are the peak times that people access DU.

Take care. I really hope your situation gets resolved soon. The pain and fear is debilitating!

[daredtowork]

66. That makes sense in General Discussion

But in the California forum it sits near the top for a long time, and I've updated it a few times.

Maybe the problem really is that people are interpreting it as a problem with the Affordable Care Act rather than a problem with Social Services/welfare policy? There seemed to be a lot more support for the initial part of the problem (undercutting housing), where health care coverage was not yet involved.

It's also fairly hard for me to concentrate, which makes dealing with the original problem all the more difficult. Right now I'm just frittering away time (a ridiculous lot of it on DU, lol) just waiting for things to be over.

[DFW]

49. I must have missed that part about universal coverage in the States

We don't even have that in Germany and my wife's cancer treatments 13 years ago would have bankrupted us if we had been in the States.

[LiberalAndProud]

29. How goes the battle?

I keep hoping to hear that you manage to get back on MediCal. Is there hope that might happen soon?

[daredtowork]

32. Lost all hope today

On Saturday I got a letter about setting a court date, which pretty much destroyed my hope of resolving this "over the phone" some how.

The case worker's supervisor never returned my call (the case worker is the one who did this) or responded to the visit I made to Social Services to leave an email via the "Social Worker of the Day". I spent this afternoon with my advocate at the Homeless Action Center. The Social Services appeals unit said they had no record of me ever having filed for Medi-Cal (even after the advocate read my Medi-Cal card number over the phone). He then suggested I applied through Covered California, and I should apply for an appeal there. We called Covered California, where they confirmed that I had not been covered through them: I was part of the group that had been moved from the county's indigent care plan to Medi-Cal in January. I wasn't in their system, and therefore I couldn't appeal there.

The Social Services appeals unit can go through the paper trail to trace the "mistake" (I seriously doubt it was a mistake) that the case worker made - but he needs time to do that, and his schedule is full of hearings. The case worker's supervisor could always choose to take a walk over to the computer in question and correct the "mistake", but apparently he's pretty notorious for not doing anything.

There really should be some ramification for "unmandating" someone on "mandated" health care: especially when the consequences are as serious as they are for me.

[LiberalAndProud]

34. What an awful nightmare.

So sorry you're being put through the wringer like this.

[daredtowork]

36. Thanks and sorry for the thread hijack

Just baffled why this was so non-interesting to DU, even in the California section. >.<

[Fumesucker]

47. You are lucky you didn't get piled on and called a troll

Any criticism of the US medical system is now subject to being accused of insufficient fealty to and thankfulness for Obamacare here on DU.

The medical care delivery system in America would make the Byzantines green with envy, anyone who has trouble navigating it now that Obamacare is in at least partial effect is considered by more than a few on DU as the enemy.

[daredtowork]

61. Is that it?

My situation isn't evidence Obamacare didn't work. Obamacare was getting me off the track to SSI and lifting me out of welfare. My problem was caused by the ability of Social Services to interfere with Obamacare: it's a problem with welfare policy.

But if people are all for letting suffering going on because it might cause bad optics if it's acknowledged - well, they should think the next time before they accuse the GOP of the politics of expediency.

[DFW]

50. I consider this to be more than a peripheral issue

Not necessarily having to do with restless legs in German, but big medicine was part of the subject, too, so go ahead and bring it up!

[daredtowork]

62. Thanks

Well, another day, another long wait to see what happens...

[MannyGoldstein]

27. Is the patch clonidine?

http://en.m.wikipedia.org/wiki/Clonidine

If so, in the US it's cheap as immediate-release pills, I think the extended-release pills are now not-insanely-expensive as well. The patches are crazy expensive. All do the same thing, it's mostly a matter of convenience.

I know a neurologist in Erlangen that I may be able to call in a favor with, PM me if that might be of interest. No promises.

[DFW]

51. I'll ask my wife to show me the packaging

If that's what it is, be sure I'll be back at you with the name in Erlangen!! That's down in Bavaria, but I'm in München often enough to warrant stopping by. Hell, if it means I can help my wife get relief I'd go to Ulaan Baatar if I had to.

[zazen]

30. I had it for years--it was gone in a month after IV ferritin infusion

Magnesium helped with the pain a little and clonapin helped with sleep (because otherwise it would wake me up), but this took care of it. FIVE YEARS OF IT. And not one doctor put the two together for me--it was only because I needed IV iron for years of anemia that I got the ferritin and experienced the change first hand.

However, some of the research I've read on restless legs suggest that even low normal ferritin may not be enough. I think it goes from 13-240 or something (reference ranges vary, obviously), but mine went from 8-ish to over 100. Problem gone.

If your docs haven't explored this (after ensuring she doesn't have hemachromatosis or sky high ferritin levels in the first place) I hope they consider it.

Good luck.

[daredtowork]

37. Actually one of the drugs I take is also used for restless leg syndrome

Topiramate - but you really have to want the results badly enough to pay in world class side effects. But at least it's available in generic. (The name brand is Topamax).

[WinkyDink]

33. MAGNESIUM:

http://www.dailymail.co.uk/femail/article-2755576/Is-bottled-water-making-ILL-From-nausea-exhaustion-osteoporosis-surprising-cause.html

"This little-heard-of deficiency is surprisingly common among women — one survey found one in ten suffers from it, but some experts cite figures as high as seven in ten — and the effects can be devastating.....

Symptoms of deficiency include agitation and anxiety, restless leg syndrome, sleep disorders, nausea and vomiting, abnormal heart rhythms, muscle spasm and weakness, hyperventilation, poor nail growth and even seizures."

[Frustratedlady]

38. Another possibility.

My daughter recently got relief from her RLS that you might check out. She was low on B-12 and iron. Once Mayo's replenished that, her RLS was gone. She's a new person.

[pnwmom]

39. Former sufferer here.

If she hasn't yet tried an elimination diet, I hope she will do so. I myself am gluten sensitive and whenever I get exposed, I'm guaranteed to have RLS and leg jerks at night. But everyone has different foods that might be triggering this.

And yes to magnesium oil and checking iron and ferritin levels. The sleep clinic I went to said that ferritin levels need to be at least in the 50-70 range -- not low normal, as I had had. (And when I asked my eye doctor if there were nutrients important for the eyes, he mentioned magnesium -- but said it was good for a lot of other things, too. Among other things, it helps muscles relax.) Magnesium can be purchased in a fluid form and simply massaged into the feet and legs. Whenever I feel a little RLS coming back, I rub the magnesium in.

Also, I found out accidentally that the support stockings I must wear during the day can help calm restless legs -- if you can stand wearing socks to bed. Someone with RLS might be willing to give it a try.

The sleep clinic also gave me a fairly long list of drugs that can cause RLS and leg jerks. Among them were antidepressants and Benadryl. I stopped the latter and use another antihistamine.

[DFW]

52. Magnesium and Iron deficiency have both been mentioned.

She is going to a specialized clinic in Göttingen soon to be checked for iron deficiency, as it specifically applies to RLS, and will see about an enhanced magnesium dosage. Diet change we can do. Side effects are not welcome. After her chemo, she has been especially sensitive to side effects of other medication and is not eager to suffer others.

[DFW]

53. Thanks to all who have joined/will join in this discussion. It affects more of us than I thought

And it apparently interests more people than I thought.

Everyone's input is appreciated, believe me!!