HOME WITH ALL THE PISS KNOCKED OUT OF ME

[sweetiepye]

My Sleep Specialist appointment was today. I f I get any further down I'll be looking at the back of my head.Obviously it did not go well. I went in there so prepared. I had everything typed out and in order, my list of meds, RLS treatments so far, results of tests, my other Doctors names and numbers. Lets see , family history, a short paper on Doctor Buchfuhrer and his methods and what I would like their practice to do for me. All presented in a polite and deferential manner on my part. To no avail . The first wrong thing this Dr. said was my iron levels at 58 were fine and I don't need iron infusions. So then I knew he doesn't know RLS and what a beast it is and has no idea of how to treat it. Not being a complete idiot I got this doctors name on the national rls help web page where Doctor B is listed only this boob was listed as a specialist in Michigan.So now I am going check out Stanford, the Cleveland clinic, and the university of Michigan.Can someone post Doctor's Buchfuhrer's email? I sat and cried today in the Doctors office a first for me. This condition is a leveler. Pam

[LotteM]

Bummer! Pricks they are. Have you reminded him of Hippocrate’s oath “First, do no harm”?

Dr Buchfuhrer’s website is rlshelp.org. I think he also practises in Stanford (search the net, you’ll find it).

His email : [e-mail]. Maybe he knows a specialist near you who’s knowledge is up-to-date and her/his treatment of RLS along the lines of Dr. Buchfuhrer’s.

Good luck!

[sweetiepye in reply to LotteM]

Bless you LotteM for responding so quickly. Isn't it interesting that people on here can be so humane and those buggers out there are nasty. Well some are. I just can't be ugly to people. Pam

[Joolsg]

Sorry to hear that. There are a lot of ‘so called’ RLS specialists who still refuse to accept the low iron/ ferritin connection. The top guy in the UK, Professor Choudhuri is the same & I remember at the RLS UK AGM , Dr Kirsty Anderson also stated that as long as ferritin levels were 75 she wouldn’t do anything.

Hopefully the research from Johns Hopkins will start to filter through and the dinosaurs will start to listen.

They have to accept results of scientific studies- so the more studies that can be funded on iron infusions, the better chance we all have.

It’s really an uphill struggle- sigh!

[sweetiepye in reply to Joolsg]

I hear you sister.

[Celtic27]

Hi pam I'm sorry to hear you where upset the doctors just seem to put you into a pigeon hole and get you out as soon as possible you know why your there even if they don't stick to your guns and make sure you get the best care! I truelly hope you feel better soon all the best david xx

[Sampsie]

I sympathise. My sleep clinic has also been very disappointing- I won't go into details...

But, in the absence of an iron infusion, has anyone had good results with iron tablets or liquid? And at what dose? Many thanks.

[Graham3196 in reply to Sampsie]

There are quite a few people who find relief from taking iron orally. I have read of some who have had quite low ferritin ( I think in the 60s) and after a short period on oral supplements have lost their symptoms. Its not common but its worth trying while you are trying to talk any doctor you can find into agreeing to an iron infusion. The disadvantage of oral medication is that it can cause stomach problems and constipation - eat more veges, drink more water and get more excercise. Or all the above plus a laxative!

The advantage of an iron infusion is that it takes you straight to the extreme, where some people need to be, without wasting time and suffering. 350 is the target because some doctors start to get nervous about affecting liver and other vital organs above that point. Almost everyone agrees that 350 is safe. When I have pushed doctors about the real limit most agree that they wouldn't be too worried if you had a concentration of 1000 but they are not sure. I think that's a reasonable attitude. After all they can't take a sample of 10000 people to see if they ruin 1 or two kidneys. I am at 271 and my doctor says that at my age she doesn't want to take a chance by trying to raise my ferritin to 350. She says the practice of iron infusions is not good enough to accurately predict the required dose so there is a chance she will overshoot the target and perhaps do some harm.

There is also a consideration that some experts say there is a problem in accurately measuring ferritin at high levels so there might be an error that one pathologist said could be as high as 30%. Apparently they have been concentrating on accuracy at low levels where it matters to anemic patients and the chemists or biologists or whatever are now working on accuracy at higher levels

I have had a few slightly bad nights lately but they have coincided with me being a bit slack on the adherence to the diet so I am not sure what is happening. I have decided to go back to taking two tablets of iron biglycinide daily and getting ferritin concentration measured every two months. We will see what happens.

A bad night for me, nowadays, is getting out of bed, having a cup of tea and a rice cake with peanut butter or jam and cheese and then working on the computer for a half hour. Back to bed and go to sleep.

[Sampsie in reply to Graham3196]

Thanks Graham. Anything above 50 is classed as normal range in the UK. Mine is 74 so I'm going to give a supplement a try.

[Hidden in reply to Sampsie]

My iron was at 70, so my internist, who is very good in all other ways, recommended I try the iron tablets sold at drug stores, over the counter. And to take one a day. I did this and it was a huge relief to my RLS, amazingly. The only other thing I do is to take one .25 tab of ropinirole about 7 pm every night, just to knock back that onset of the evening RLS. I've been at this regimen for quite some time with excellent results.

[Sampsie in reply to Hidden]

Thanks Isd245. Good that it helped you.

[Parminter]

So sorry Sweetiepye. I have just received this here at the bottom of Africa, or I would have replied sooner

stanfordhealthcare.org/doct...

You can make an appointment from here, too.

There is one tiny upside to this - two, perhaps. You are getting vastly educated, and now you are going to see the best of the best after seeing the worst of the worst.

And we care about you, and we get it.

[sweetiepye in reply to Parminter]

You are very encouraging . Thank you so much. Pam

[Heatherlss]

I totally understand what you're feeling. I too am suffering from something similar. Already the RLS has us struggling all the time and in addition, we go with all our heart and soul to these "specialists" who are so arrogant that they just would not be willing to listen to us at all. There is still that stigma that google can be harmful for medical purposes. While I do agree to that to some extent; however, it is paramount that the patient stays informed and besides, we are not talking about some roadside FB post, we're talking about the specialists and their opinions on how treatment could be done.

[sweetiepye in reply to Heatherlss]

I have had several Doctors tell me to stay off Google if I want sound medical advice. I crosscheck all information I get online and I go to recommended sites that are associated with a well known hospital or university. The Doctors go to the same sites, I've seen them do it. They don't like being questioned, it's easier if patients follow directions. Often not so good for the patient though.

[Pegfaulman]

I am sorry you had such a bad experience with a sleep specialist! Do you live in Michigan? I go to a sleep specialist in northern Michigan who is very knowledgeable and helped me a great deal with my RLS. He also has a delightful personality. I can give you his name if you wish.

[sweetiepye in reply to Pegfaulman]

Yes please

[Pegfaulman in reply to sweetiepye]

I just realized that I should get the doctor’s permission before I post his name on a public forum. Meanwhile I will mention that the doctor has me taking Gentle Iron as DicCarlson mentions below. My ferritin level has gone up slowly but surely (from 70 to 120). While not a “cure” for RLS, I have notice a definite improvement.

[Hidden in reply to Pegfaulman]

Its ok to mention your doctor's name on here, especially a doctor who knows about RLS. Good RLS doctor's names can help others who live near that doctor.

[Pegfaulman in reply to Hidden]

Thanks Elisse2. I didn’t know if there were some privacy issues involved.

[Graham3196 in reply to Pegfaulman]

I wonder if your improvement indicates that your RLS has a low ferritin as a cause? It might indicate that an iron infusion would be really effective in your case. In my case I think the iron infusion helped a bit but I am not symptom free. I would describe it as mild and annoying, Just the FODMAP diet seems to be the best thing I have going for me. My ferritin is now 271.

[Pegfaulman in reply to sweetiepye]

The doctor’s name is Dr Craig Boss.

[Battleground in reply to Pegfaulman]

Please where is Dr.Craig Boss in northern Michigan? I have yet to find a Sleep Specialist any where that knows or cares about anything but Sleep Apnea.

[Pegfaulman in reply to Battleground]

Dr Boss is with the sleep clinic in Charlevoix.

[sweetiepye in reply to Battleground]

I have an appointment at the university of Michigan with Dr. Joseph Andrew Berkowski. He studied with Dr. Buchfuhrer. I couldn't get in until October ,once again I have hope. Pam

[DicCarlson]

Start your own iron therapy - Ferrous Bisglycinate Clelate, also called gentle iron, non-constipating. Also available as a patch from Patch MD. The tablets I took cost $5 US. I had raging RLS (with Ferritin at 49, and low % saturation) - the only sleep I got was an hour or two with my legs vertical! Iron eliminated the severe RLS, (went to 108 in 3 months) but I still suffer from sleep issues now 3 years out. Haven't taken the iron in a year.

[Hidden in reply to DicCarlson]

I tried the Gentle Iron, but it was not as effective as the iron capsules which I bought from the drug store, which are stronger. Yes, they are more constipating, so you have to get some help there. either naturally - lots of water, exercise - or with a drug store remedy.

[DicCarlson in reply to Hidden]

For constipation - this is amazing - Triphala (an herbal blend). muditainstitute.com/article...

[Annieapple]

Feel for you! SO sorry 😐

[Celtic27]

Hi sweetiepye I was talking to my wife has had restless legs for a long time eventually she was advised to try magnesium which she still takes and it works most of the time it might be worth you trying what have you to loose david

[sweetiepye in reply to Celtic27]

I am going to try that . I know we all have different answers for RLS , but magnesium seems to work for many. Thank you to both of you. How are you getting on David?

[Willow6070]

Hi. 1 hour before bed

I take 2mg of Ropinirole,1 Propranolol and 1 mertazapine

Then I mix 1 teaspoon of Kratom to a paste adding a milky shake drink slowly in a

Small cup.Drink in one go ,then a mouthful off the shake ,then I have a mint wafer to take away the taste.

You will find your own way of taking KRATOM .The type I use is RED RIAU.

This helps me a lot .

Hope this helps you.

Cheers Philip.

[Sara_2611]

OMG

[Krickets]

O no ! I’m so sorry!!! I have a referral at Mayo Clinic for a Neuroligist that some one told me about , Where did you go? My appointment isn’t until November, I pray I can get off these DA meds!!!

[sweetiepye in reply to Krickets]

I'm sure you will be fine at the mayo. This doctor was in state and listed on the web site for rls. I knew I was taking a chance, but I thought that meant something.Better to have a personal recommendation I think. Good luck to you in your journey. I have decided to go to the University of Michigan. A good person on this site recommended a doctor and as I see another doctor there I decided to go to try it.

[Krickets]

Good Luck!!!!

[Sampsie]

Thanks Bodzui. I hadn't heard of LDN - googled it and it's very interesting. Perhaps in time it might be used more.