Search found 1185 matches

by stjohnh
Mon Apr 19, 2021 2:47 pm
Forum: Just Joined?
Topic: RLS behind knee caps New to forum
Replies: 3
Views: 62

Re: RLS behind knee caps New to forum

I just recently joined and would like to hear if anyone else experiences the RLS sensations behind your knee caps? All I hear from others that their issues are felt in their calves or thighs. My Dr has tried every RLS medication available and the only one that works is pramipexole. Unfortunately it...
by stjohnh
Sat Apr 17, 2021 2:35 am
Forum: Prescription Medications
Topic: Iron Infusion - When Will Insurance Pay?
Replies: 7
Views: 131

Re: Iron Infusion - When Will Insurance Pay?

Thanks for the replies, Holland and Stainless! I had a successfully meeting with my PCP and was referred to a clinic for an infusion! I'm feeling so much relief knowing there may be a solution in the near future. I haven't received a call back from the scheduler yet, but want to be prepared when th...
by stjohnh
Fri Apr 02, 2021 8:42 pm
Forum: General Topics: RLS
Topic: How many hours do you sleep?
Replies: 16
Views: 250

Re: How many hours do you sleep?

Sleep is more complex than most people think. There are several stages, and only the deeper stages give refreshing sleep. So a person can sleep 8 hours and still not be refreshed. It is not easy to determine how long each stage of sleep lasts for a particular individual. I spent a year monitoring my...
by stjohnh
Mon Mar 29, 2021 12:33 am
Forum: Just Joined?
Topic: 1st post after 24 years of RLS
Replies: 143
Views: 10351

Re: 1st post after 24 years of RLS

So it's been 3 months ... mostly awful ... I should mention that during the brief holiday I would only get RLS in my legs When I use the patch I get it equally in ARMS and legs (sometimes concurrently) ... I'll wrap it up for now but come back with what the Neurologist says This sounds to me like y...
by stjohnh
Sun Mar 28, 2021 5:20 pm
Forum: Prescription Medications
Topic: Iron Infusion - When Will Insurance Pay?
Replies: 7
Views: 131

Re: Iron Infusion - When Will Insurance Pay?

First you need to get your PCP on board with the plan for IV iron. If PCP doesn't think IV iron is worth pursuing, then you need to educate the PCP or get a new one. Most PCPs don't actually order the IV iron, mostly done by hematologists. So the next step is referral to hematology, then get the hem...
by stjohnh
Sun Mar 28, 2021 1:48 am
Forum: Just Joined?
Topic: going "cold turkey"
Replies: 36
Views: 1451

Re: going "cold turkey"

Hmmm... So you have been off pramipexole for 2 nights, tonight will be the third. correct? And you are taking 300 mg gabapentin three times daily? And the passing out spell was due to the combination of gabapentin and baclofan? Assuming that is true, tonight will likely be fairly bad but likely the ...
by stjohnh
Fri Mar 26, 2021 5:55 pm
Forum: Prescription Medications
Topic: Iron Infusion - When Will Insurance Pay?
Replies: 7
Views: 131

Re: Iron Infusion - When Will Insurance Pay?

This is a unfortunate situation, especially in the USA. Sometimes insurance will pay for IV Iron for RLS patients, but mostly they won't. From their point of view, IV Iron is only covered for the FDA approved indications listed on the product's package insert, which none of the current IV Iron prepa...
by stjohnh
Fri Mar 26, 2021 2:02 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Reading results of Iron Bloodwork
Replies: 20
Views: 473

Re: Reading results of Iron Bloodwork

Holland, I'm not quite understanding you about higher Ferritin levels being due to something else. What else? I've read about a number of people with RLS who have, with oral iron, raised ferritin to close to 100, as I have. How soon after you augmented on pramipexole did you start a reduced dose of...
by stjohnh
Wed Mar 24, 2021 1:00 pm
Forum: Augmentation
Topic: new member - transitioning from ropinirole to gabapentin
Replies: 49
Views: 4900

Re: new member - transitioning from ropinirole to gabapentin

Please do be careful of your ropinerole dose. The max is considered to be 1 mg daily. You recently went from 1mg to 1.25mg and are now at 1.5mg you are at 50% over max - and still suffering RLS symptoms. I think you need to reconsider whether you should be taking ropinerole. Bearing in mind that yo...
by stjohnh
Wed Mar 24, 2021 12:58 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Reading results of Iron Bloodwork
Replies: 20
Views: 473

Re: Reading results of Iron Bloodwork

I was able to to increase my ferritin level from 19 baseline to about 100 using OTC iron tablets, where it has stayed for over two years. It has significantly reduced my RLS. I take pramipexole 0.125 mg as needed and have not augmented despite about a decade on this med. Part of this is no doubt du...
by stjohnh
Mon Mar 22, 2021 7:50 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Reading results of Iron Bloodwork
Replies: 20
Views: 473

Re: Reading results of Iron Bloodwork

MCH is Mean Corpuscular Hemoglobin. It is the amount of hemoglobin in the average cell. Doesn't mean much unless there are significant abnormalities in the other cell indexes. It can be normal with significant blood problems because it is an average. Most significant blood problems are associated wi...
by stjohnh
Mon Mar 22, 2021 7:45 pm
Forum: Prescription Medications
Topic: MCV and MCHC levels
Replies: 5
Views: 185

Re: MCV and MCHC levels

What about slightly a low or average MCV and low MCH? Would that indicate anything? Probably means nothing. Possibly early iron deficiency anemia. These numbers are generated automatically in modern cell counting machines when the doctor orders a CBC ("Complete Blood Count"). For the most part the ...
by stjohnh
Thu Mar 18, 2021 9:15 pm
Forum: Just Joined?
Topic: RLS and the COVID Vaccine
Replies: 7
Views: 281

Re: RLS and the COVID Vaccine

I haven't taken the vaccine, but I did have Covid-19. Really sick for a week, but didn't cause any RLS symptoms to worsen.
by stjohnh
Thu Mar 18, 2021 7:48 pm
Forum: Prescription Medications
Topic: MCV and MCHC levels
Replies: 5
Views: 185

Re: MCV and MCHC levels

High MCV is commonly associated with Vit B12 deficiency and less commonly with other blood problems.The low MCHC goes along with the high MCV. MCV is Mean Corpuscular Volume. This is doctor-speak for large red blood cells. MCHC is Mean Corpuscular Hemoglobin Concentration. If the red blood cells are...
by stjohnh
Thu Mar 18, 2021 7:41 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Reading results of Iron Bloodwork
Replies: 20
Views: 473

Re: Reading results of Iron Bloodwork

Thanks Holland. I'm wondering if anyone here also has had experience or seen a link between MCV and MCHC levels? My MCV is high and my MCHC is low. Has anyone else seen this? On another note: My neurologist got back to me and said she does not have experience with iron infusion protocols but would ...