Search found 221 matches
- Sat Jun 13, 2020 4:57 pm
- Forum: General Topics: RLS
- Topic: Location of RLS Symptoms Changing
- Replies: 33
- Views: 11643
Re: Location of RLS Symptoms Changing
Legs for years; Later, also but only rarely in arms. Then medication and augmentation, and legs and arms bad. Since I've been off dopaminergic meds, I rarely have it outright in my arms, but it's always there ... hovering, sort of; I feel the wrongness. I have no boundaries to the upper side of my ...
- Thu Jun 04, 2020 12:33 pm
- Forum: General Topics: RLS
- Topic: Location of RLS Symptoms Changing
- Replies: 33
- Views: 11643
Location of RLS Symptoms Changing
My RLS seems to change places. It started off in my legs 3 years go. About 1.5 years ago it moved to the right wing of my scapula. Now it seems to be on the left wing of my scapula.
Wondering if anyone else has experienced changed in their RLS symptoms.
Wondering if anyone else has experienced changed in their RLS symptoms.
- Wed Jun 03, 2020 8:55 pm
- Forum: Non-prescription Medicines, Supplements, Diet
- Topic: Treating Central Nervous System Inflammation
- Replies: 20
- Views: 10332
Re: Treating Central Nervous System Inflammation
I would do 1x1. It seems to me you are very excited about what you are reading and are eager to resolve this. Everyone on this board has felt the same way and I empathize with you. My recommendation would be to only change one variable at a time. It I a very slow process, but it’s the only way to kn...
- Sat May 16, 2020 2:12 pm
- Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
- Topic: Ethnic breakdown?
- Replies: 27
- Views: 37128
Re: Ethnic breakdown?
Oozz - what did they say about hemoglobin levels? My hemoglobin has always been fine to abundant (until recently). My ferritin was single digits at one point, though. They showed a graph in the most recent iron webinar showing that IV iron worked better with patients who had higher hemoglobin level...
- Thu May 14, 2020 1:11 am
- Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
- Topic: Ethnic breakdown?
- Replies: 27
- Views: 37128
- Thu May 14, 2020 1:08 am
- Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
- Topic: Ethnic breakdown?
- Replies: 27
- Views: 37128
Re: Ethnic breakdown?
I’m reviving this on the basis that, in one of the most recent webinars, they said IV iron efficacy was directly related to hemoglobin levels. It was so strong it was predictive of how the patient would react to the therapy. This ties in nicely the thalassemia theory discussed here. I don’t think th...
- Thu May 14, 2020 12:59 am
- Forum: Non-prescription Medicines, Supplements, Diet
- Topic: Oral Iron instead of meds?
- Replies: 6
- Views: 5417
Re: Oral Iron instead of meds?
In one of the more recent webinars, they stated that the efficacy of IV iron is directly related to hemoglobin levels. They theorized it has something to do with limited capacity for delivering both oxygen and high levels iron to the brain.
- Wed Apr 22, 2020 8:48 pm
- Forum: General Topics: RLS
- Topic: Hepcidin Testing
- Replies: 2
- Views: 1462
Re: Hepcidin Testing
Searching through the forums I found a study done on the very subject of Hepcidin. Seems like they found low Hepcidin in CSF, and higher Hepcidin in the brain. This could suggest that the Hepcidin in the brain could potentially be reducing iron uptake in the brain.
- Wed Apr 22, 2020 8:45 pm
- Forum: Non-prescription Medicines, Supplements, Diet
- Topic: Fasting, keto and lectin free diet
- Replies: 14
- Views: 8577
Re: Fasting, keto and lectin free diet
Hi Fruno - do you have early-onset (< 36 years) or late-onset RLS? Funny that you would ask this :) Is this a magic number? I wasn't aware of it. I observed the first symptoms shortly after turning 35. In retrospect, I suspect that starting PPIs could have contributed, at least there is a clear tim...
- Wed Apr 22, 2020 3:00 pm
- Forum: Prescription Medications
- Topic: Infusion #3
- Replies: 33
- Views: 5190
Re: Infusion #3
We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to ...
- Wed Apr 22, 2020 2:59 pm
- Forum: Prescription Medications
- Topic: I'm finally getting an infusion
- Replies: 40
- Views: 4235
Re: I'm finally getting an infusion
I'm about 6 weeks post-infusion. I am maintaining at 6mg hydromorph contin instead of 9 mg. I have energy during the day, and find I can work normal amount of hours again. I've gone from working 5 or 6 hours (some days, less), some of those spent drooling in hiatus or lying under my desk, to workin...
- Wed Apr 22, 2020 2:57 pm
- Forum: Prescription Medications
- Topic: IV Iron Revisited
- Replies: 3
- Views: 451
Re: IV Iron Revisited
Holland -
Do you have early-onset (< 36 years) or late onSet RLS?
Do you have early-onset (< 36 years) or late onSet RLS?
- Wed Apr 22, 2020 2:56 pm
- Forum: Non-prescription Medicines, Supplements, Diet
- Topic: Fasting, keto and lectin free diet
- Replies: 14
- Views: 8577
Re: Fasting, keto and lectin free diet
Food with FODMAPs (to avoid) include legumes, garlic, onions, lots of other veg, many fruits, and a lot of gluten-free grains, also some foods that are considered prebiotics (food for the good gut bugs). I wanted to try it but I gave up the idea cuz I was (still am) doing the Wahls diet, and I didn...
- Mon Apr 20, 2020 3:18 pm
- Forum: Prescription Medications
- Topic: Gastric Side Effects
- Replies: 8
- Views: 681
Re: Gastric Side Effects
Wanted to update this. I came off all drugs for two weeks, then restarted on mirapex + lyrica. My gastroparesis seems to have gone away. Although I’ve been on a liquid diet for two weeks, I would conclude that it was the methadone causing my GI motility problems. I will now be rotating meds with the...
- Mon Apr 20, 2020 3:12 pm
- Forum: General Topics: RLS
- Topic: Hepcidin Testing
- Replies: 2
- Views: 1462
Hepcidin Testing
Hello - I’ve been researching a lot lately and was wondering why Hepcidin is not a biomarker used in RLS to evaluate functional issues with iron transportation. If you believe in the inflammation theory, it seems like a very logical marker as increased inflammation would increase Hepcidin and reduce...