Johns Hopkins

[Westann]

Has any one received care for RLS at Johns Hopkins in Baltimore? They are supposedly a "Center for Excellence" in RLS treatment but I'm having a very negative experience with them. It felt like they were my last hope to finally get relief from my symptoms with the right care and medication, but now, well, no more hope. Just have to live with it. And self-medicate.

[SueJohnson]

What was your negative experience?

[Westann in reply to SueJohnson]

After a 6 month wait, I saw an RLS specialist in the neuro clinic at Johns Hopkins. She ordered blood work for ferritin, iron saturation, etc to be done near my home, since I live 4 hours away from the clinic. She also ordered a Home Sleep Apnea Test. Her office staff gave me the apnea device. They said it was all set up and I just had to wear it for one night, and the data would be transmitted "Automatically, over the cloud". I went home, had the blood work done, and wore the device. After 2 weeks with no contact from them, I sent a message to the doctor via MyChart. All of my messages were responded to by some unidentified man who gave me wrong information and blamed the delays on staff shortages. Yesterday I finally had a video conference with the doctor, 6 weeks after my appointment. She had received no results for the labs ( I know they were faxed to her office), or the apnea test, or seen any of my conversations with the rude mystery man. So there wasn't anything she could do, and it was left up in the air. I called the manufacturer of the apnea device, and it turned out the office staff totally screwed it up. Again, no resolution. You can't get anyone on the phone in the clinic office, or in the "patient relationships" office. Sorry, I know I'm rambling but I'm so incredibly frustrated. Johns Hopkins may be doing great research but they don't seem to have competent support staff to provide treatment to real patients. In my opinion, they should stick to their test tubes and stop advertising themselves as an RLS QuaIity Care Center.

[SueJohnson in reply to Westann]

I'm sorry. I guess it would have worked out better if you lived near them. I'm surprised the people who did the blood work for the ferritin test didn't send the results to them.

What was your ferritin?

[Westann in reply to SueJohnson]

My lab did send the bloodwork, twice. And I sent it myself on MyChart, which seems to be the only way to communicate with them, except the doctor never gets anything. I honestly don't see how things would be better if I lived closer, unless I draw my own blood, put it in a Ziploc bag and hand-deliver it directly to the doctor.

My ferritin was 85.

[SueJohnson in reply to Westann]

Strange.

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test obviously from someone else after 3 months.

[Jumpey]

I'm sorry for you.What happened?

[DicCarlson]

I never went there - but the resources on their website were the reason I figured out that iron deficiency was the cause of my RLS. Dr. Chris Early's videos were very good. (search YouTube for more).

[UsableThought]

The two pioneering RLS researchers who made Johns Hopkins famous in this area are both gone. One died, the other I believe is retired. And they don’t have a real RLS center any more - you can see a neuro about RLS if you can find one in their staff directory who says they do, but as I say they have no center as such. I base this on extensive research I did a few years ago. Unless JH has improved things since then, I wouldn’t recommend them.

[Westann in reply to UsableThought]

Thank you. Now I feel a little less crazy. I definitely wouldn't recommend them either (obviously!)

[UsableThought in reply to Westann]

FYI, see my further reply to LotteM for more about my experience.

[LotteM]

It may be a good idea to share your experience with rls.org. They may know more. Dr Chris Earley is (or was?) on their scientific advisory board.

[UsableThought in reply to LotteM]

Yes, I see that Earley was on the foundation board at least as of 2023. Oddly, I also see that he is still listed as active and available to new RLS patients at Johns Hopkins as well:

profiles.hopkinsmedicine.or...

But when I was trying to get an appointment at JH a few years ago, he was not listed among the available neurologists who dealt with RLS. I do see that JH says they have a center for RLS treatment - hopkinsmedicine.org/neurolo... . Back when I was trying to get an appointment several years ago, they had a web page or two saying they had an RLS center, but there was no phone number listed for it. I called and spoke to several people and was told I could either apply via the Sleep Center or the Movement Disorders Center (which would mean Parkinson's too, not just RLS).

Plus, I was told I could not find an RLS doc by talking to someone at an RLS "center", nor by going through the Movement Disorders Center; instead I was told I had to look through the very brief bios about their RLS neurologists on their web site, and then call those doctors individually in search of an appointment. It seemed very disorganized, and Earley was not listed as one of the neurologists at that time - I knew his name very well and would definitely have tried to get an appointment with him. In the end JH seemed so difficult and unhelpful that I gave up and began looking elsewhere for a specialist.

Earley was one of the two researchers who made JH well-known for RLS research. The other was Richard Allen, who died in 2020.

[Westann in reply to UsableThought]

Yet the RLS foundation continues to list JH as a Quality Care Center in all of their patient literature. I should share my experience with them as LotteM suggested.

Did you eventually find a specialist somewhere else?

[UsableThought in reply to Westann]

Yes, I looked closer to home (New York state) and found a specialist in Albany, not too far from me. This is Dr. Jennifer Durphy. She is up to date on the problem of augmentation & the preference now for gabapentin or Horizant, plus methadone in my case. She’s generally helpful, but not on the front lines of research; and also she doesn’t know as much as she should about sleep apnea & other issues that opioids can cause. But specialists are few and far between so I do my best to get along with her.

[Westann in reply to UsableThought]

Thank you. Albany is actually closer to me than Baltimore so I will keep her in mind. When I can bear starting this whole process again.

[jebsat]

I never got past the rude receptionist who wouldn't even give me an appointment because they were booked out so far. The doctor I am seeing didn't seem to think they had anything special to offer regarding RLS.

[fritzb43]

Hopkins are now only treating residents of the state of Maryland. Your best bet now is Mayo, either in Minn or one of the other Mayo centers, Florida for example.

Another possibility is Dr. Mark Buchfuhrer in California. I think he does tele-health consultations. And NEVER self-medicate. You literally don't know what you're doing.