1st post after 24 years of RLS

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Icantsleep
Posts: 193
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So it's a good thing that the one specialist who is still trying to help me sought the advice of a mental health expert from the Ottawa Hospital as opposed to the Royal Ottawa mental health center

This was for my Clonazepam taper , and a full assessment was involved
This now trumps the Royal's assessment

His findings were that I had RLS , a CRD, and lastly anxiety SECONDARY to these aforementioned medical conditions.

That is in stark contrast to my assessment in March 2020 at the Royal Ottawa.
... that doctor determined that I had generalized anxiety disorder, anti social disorder, and here's the kicker , SOMATIC SYMPTOM DISORDER

In other words... I had RLS because I THOUGHT i had rls , therefore this is what was CAUSING MY RLS !!!!!

The report is preposterous, and nearly cost me my pain management appointment
My thoughts and anxiety were the root cause of my RLS, and THIS should be the only focus of my care lol.

Now that I've seen it, it is remarkable that the manager of CPM Ontario even gave me a second look .
I can't believe this report is in my chart for other doctors to see

It is so sad that anyone with a mental health issue, whatever the cause, essentially puts their life at risk by seeing a mental health "expert"

.... at least they do in Ottawa

I'm going to need to put this aside for the moment and actually focus on developing a rapport with the pain management doctor.
I sure got off to a tough start .

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: 1st post after 24 years of RLS

Post by ViewsAskew »

Icantsleep wrote:
Sat May 01, 2021 11:46 pm
So it's a good thing that the one specialist who is still trying to help me sought the advice of a mental health expert from the Ottawa Hospital as opposed to the Royal Ottawa mental health center

This was for my Clonazepam taper , and a full assessment was involved
This now trumps the Royal's assessment

His findings were that I had RLS , a CRD, and lastly anxiety SECONDARY to these aforementioned medical conditions.

That is in stark contrast to my assessment in March 2020 at the Royal Ottawa.
... that doctor determined that I had generalized anxiety disorder, anti social disorder, and here's the kicker , SOMATIC SYMPTOM DISORDER

In other words... I had RLS because I THOUGHT i had rls , therefore this is what was CAUSING MY RLS !!!!!

The report is preposterous, and nearly cost me my pain management appointment
My thoughts and anxiety were the root cause of my RLS, and THIS should be the only focus of my care lol.

Now that I've seen it, it is remarkable that the manager of CPM Ontario even gave me a second look .
I can't believe this report is in my chart for other doctors to see

It is so sad that anyone with a mental health issue, whatever the cause, essentially puts their life at risk by seeing a mental health "expert"

.... at least they do in Ottawa

I'm going to need to put this aside for the moment and actually focus on developing a rapport with the pain management doctor.
I sure got off to a tough start .
OMG - so lucky you went to another doc! But, think of all who cannot. Ugh.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Icantsleep
Posts: 193
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Finally talked to a hematologist about my sky high ferritin

.... guess what reading the lab omitted from the blood work requisition....

Ferritin lol

Anyways... I'm going to have a different genetic/ hemachromatosis test

I voiced my concern about treating iron overload In the unlikely hood it would be necessary.
We all know the correlation between low ferritin and RLS

She said if I don't have indications of iron overload, we could look into the root cause of my very elevated ferritin.
... perhaps inflammation, which may contribute to my rls or even be the cause (????)

Problem is, it will take 3-4 months to get these test results , then potentially change the focus to inflammation

How does a lab do an iron panel and forget the ferritin reading ??

stjohnh
Posts: 1214
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: 1st post after 24 years of RLS

Post by stjohnh »

Icantsleep wrote:
Wed May 05, 2021 5:11 am
Finally talked to a hematologist about my sky high ferritin

.... guess what reading the lab omitted from the blood work requisition....

Ferritin lol

Anyways... I'm going to have a different genetic/ hemachromatosis test

I voiced my concern about treating iron overload In the unlikely hood it would be necessary.
We all know the correlation between low ferritin and RLS

She said if I don't have indications of iron overload, we could look into the root cause of my very elevated ferritin.
... perhaps inflammation, which may contribute to my rls or even be the cause (????)

Problem is, it will take 3-4 months to get these test results , then potentially change the focus to inflammation

How does a lab do an iron panel and forget the ferritin reading ??
Most people that have hemochromatosis have a ferritin of over 1000.

Labs define the term "iron panel" in many ways, there is not a medically defined "iron panel." Many labs do not consider the ferritin as part of the iron panel. When dealing with labs and doctors it is best not to use the term "iron panel." If there are iron related tests you are wanting, better to tell the doc exactly which tests you want.
Blessings,
Holland

Icantsleep
Posts: 193
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

I didn't walk in to a lab saying "hey, can you give me an iron panel ?"

I had a requisition from the hematologist that clearly asked for the ferritin, along with numerous other specific items.
I still have the digital copy

Over the past few years my ferritin level has been between 650 and 900
... most recently about 900 in Fall

It would have been neat to have a more recent number.
This is the first time to my knowledge I've had this occur.

Anyhow......

Pain management consultation is tomorrow !

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: 1st post after 24 years of RLS

Post by Rustsmith »

I'm not sure that I understand why it takes weeks to get the results of your hemachromatosis genetic test. Like you, I have a long history of high ferritin (600 or more for several years). Last summer my PCP offered to figure out why my ferritin remained so high and so she ordered a genetic test for hemachromatosis. I got the results in about a week and they were negative. Ironically, the ferritin test that was done in the same blood draw came back as 250, the lowest it has been in many years. I wish that all this helped with my RLS, but I remain in the IRLSSG's Very Severe category if not treated and moderate with treatment.

And good luck with your pain management appointment. I hope you get the result you are looking for.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Icantsleep
Posts: 193
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Rustsmith wrote:
Wed May 05, 2021 7:17 pm
I'm not sure that I understand why it takes weeks to get the results of your hemachromatosis genetic test. Like you, I have a long history of high ferritin (600 or more for several years). Last summer my PCP offered to figure out why my ferritin remained so high and so she ordered a genetic test for hemachromatosis. I got the results in about a week and they were negative. Ironically, the ferritin test that was done in the same blood draw came back as 250, the lowest it has been in many years. I wish that all this helped with my RLS, but I remain in the IRLSSG's Very Severe category if not treated and moderate with treatment.

And good luck with your pain management appointment. I hope you get the result you are looking for.
I'm not sure that I understand either lol

I'd love to rule out hemachromatosis and get on with finding the source of inflammation, if that is in fact the culprit

Until then my best hope to treat rls is pain management (and the accompanying side effects)

Icantsleep
Posts: 193
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So just to update

I have no updates

Nothing from hematology

More surprising is nothing from pain management

As much as I chase them down with the help of the office of my family doctor , all the stuff discussed in my one and only pain management appointment has been just talk

No follow up or following of any kind is planned

I won't get into what was discussed in my 90 minute consultation until actual recommendations reach my family doctor
What was supposed to take 3 days has been over 3 weeks

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

It must be frustrating to have to sit there and wait. At least you're looking into other possible treatments meanwhile.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Icantsleep
Posts: 193
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So I finally talked with my family doctor .
Between pain management's ideas and my 2 other sleep specialists recommendations the sky is essentially the limit in terms of pain management medications
My family doctor will do all the actual prescribing, at least at this point .

Ideas include :
All opiods (within reason I imagine) ... unfortunately there is nothing perfect without side effects of course .

Butrans patch was heavily discussed, I just don't like the idea of round the clock opioid dependence .
I'm also concerned the dose I'd need for nighttime coverage would be such sever overkill during the day .
A patch is worn for 7 days before replacing.
My family doctor thought I may be able to take it off and put it on again , but that's not the case .
I believe I'll try at least one patch at the lowest dose sometime soon to see what happens

Naibilone and/or various natural or synthetic THC nasal sprays
Injections if I really wanted or thought they'd be beneficial in any way
Another spinal stimulator referral if I wanted (my movement disorder neurologist put one in already... not that I'm going to do it at this point )
A ketamine/lidocaine nasal spray .... lidocaine because the K burns your nose so bad .... " people love it "
Group therapy for coping strategies (with other choric pain patients )
Other lower grade stuff like more magnesium (which only makes me VERY sleepy without rls coverage)

Cutting Codeine contin 50mg was given the ok , but that only happened once (it hit me HARD in about 60 seconds and only lasted about 2 hours ) ... so not an option

Codeine contin 50mg seems to be my best bet right now for a 12 hour coverage without horrid side effects, although I'm still avoiding actually using it for some reason... probably reluctant to live with OIC more than the excessive sedation..

I've actually gone back to 0.25mg Neupro patch for a few days to reduce Codeine significantly so I can eat for a few days and to hopefully get Codeine to preform better once resuming higher doses ( 75mg seems to do nothing at all except make me constipated)

DAs never last though ... here's to hoping Dr. Ondo or someone gives Ecopipam or something similar a fine tuning and solves Augmentation for all of us !
I think this would be unicorn solution I'm holding out for lol

All my doctors would prefer if I actually had a pain management doctor follow me
I only got a one off consultation... basically because centres for pain management Ontario don't really actively treat rls

My only follow up at this time is with my newer sleep specialist.
She is well connected and is definitely not the rls expert between the 6 doctors I've seen lately, but she tries the hardest to figure it all out
She hounded my old sleep specialist for opioid ideas and all around better care ideas

She has also asked me to look into diprydamole and parempanel , but I've rambled long enough and that will be another discussion.
Although I suppose since I can basically have access to any drug , your thoughts and ideas are welcome

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