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Search: Posts Made By: Suebee
Forum: Gear 12-11-2019, 10:55 PM
Replies: 4
Views: 767
Posted By Suebee
The Advenchair does look really cool being built...

The Advenchair does look really cool being built out of mountain bike parts, but a $10k price tag? And while my friends love me , Iím not sure I could get them to pull me up a mountain. It would be...
Forum: General 12-10-2019, 04:32 PM
Replies: 70
Views: 20,322
Posted By Suebee
Yes, rituximab and orcevous are nearly identical....

Yes, rituximab and orcevous are nearly identical. My understanding is that I canít get rituximab prescribed or covered by my health insurer here because it is still classified as ďexperimentalĒ for...
Forum: General 12-07-2019, 05:05 PM
Replies: 70
Views: 20,322
Posted By Suebee
Path to orcevous update

I was on phone total combined of several hours with PPO and Pharmaceutical manager for PPO about whether my private health insurance covered this drug AND the infusion service. The reason PPO...
Forum: MS Fitness 12-04-2019, 01:13 AM
Replies: 7
Views: 418
Posted By Suebee
Clm3e. Great find! The guide gives freedom to...

Clm3e. Great find! The guide gives freedom to choose activity but outlines what is important and frequency. I plan to use these guidelines to help me get max out of my work outs. Thanks for sharing!
Forum: MS Fitness 11-30-2019, 06:08 PM
Replies: 7
Views: 418
Posted By Suebee
Drillerdou, working full time like you do with...

Drillerdou, working full time like you do with MS, that is awesome. I have been working full time on / off. I found the biggest challenge was to figure out/know/ respect my physical limits in the...
Forum: MS Fitness 11-29-2019, 11:32 PM
Replies: 7
Views: 418
Posted By Suebee
These guidelines are desperately needed. Water...

These guidelines are desperately needed. Water exercises need to be in cool temperature pools. HITT
Works well, especially for msers with low endurance. TRX is great for strengthinging and those...
Forum: MS Fitness 11-29-2019, 11:23 PM
Replies: 4
Views: 900
Posted By Suebee
Tammy. Your story is so encouraging. I am told...

Tammy. Your story is so encouraging. I am told over and over again by drs that my weakness is due to de-conditioning. This is frustrating because it suggests I can can easily recondition my body. ...
Forum: MS Fitness 11-21-2019, 01:21 PM
Replies: 52
Views: 22,241
Posted By Suebee
Larry and all update on my quest to do FES. Why...

Larry and all update on my quest to do FES. Why I drag my heels (ms pun??) I have enough info on FES to know one needs to use it frequently and ongoing to get benefit as MSer. My problem is I can...
Forum: General 11-21-2019, 12:56 PM
Replies: 70
Views: 20,322
Posted By Suebee
Update on my journey to orcevous__ As AM...

Update on my journey to orcevous__
As AM suggested, really important to update vaccines prior to beginning treatment. I took Am's suggestion and I had Tdap vaccine and pneumonia vaccine after...
Forum: Gear 11-21-2019, 12:37 PM
Replies: 1
Views: 211
Posted By Suebee
Great article! I think very often the focus of...

Great article! I think very often the focus of achieving activities of daily living "adls" is on getting goal accomplished rather than nuances such as minimizing dependency and fostering...
Forum: General 11-18-2019, 05:20 PM
Replies: 2
Views: 320
Posted By Suebee
This is not a surprising finding. MS is so...

This is not a surprising finding. MS is so variable in severity, frequency of flares, and disability level progression or even regression of disability during remissions. Broad predictors might be...
Forum: MS Fitness 11-04-2019, 11:38 AM
Replies: 52
Views: 22,241
Posted By Suebee
My hope is up/ Iím doing FES!

Hi again, I know Iím a bit chatty here, I hope you all donít mind too much. I wanted to add my recently concocted plan to FINALLY try FES with professional guidance, hopefully get lasting benefit...
Forum: MS Fitness 11-03-2019, 06:42 PM
Replies: 52
Views: 22,241
Posted By Suebee
Hey all, I got renewed focus on current FES...

Hey all, I got renewed focus on current FES studies after Daveís post. I found an article that is information dense, which was published last year. https://doi.org/10.1177%2F1545968317753681

It...
Forum: General 11-02-2019, 08:38 PM
Replies: 1
Views: 328
Posted By Suebee
Update / continued question about modafinil coverage

My husband called today to verify that More than 30 modafinil pills a month are not covered under my bcbs anthem coverage. Initially the insurer rep incorrectly told us to file a renewed request...
Forum: General 10-29-2019, 02:11 PM
Replies: 1
Views: 328
Posted By Suebee
Insurance frustration/ appeal/ meds/ caused undue distress

Anyone else having trouble getting modinifil lately? This med is the reason I can work or go out to grocery shop or see my kids in a event. Ms fatigue makes me feel like I'm on a death March and...
Forum: MS Fitness 10-29-2019, 01:34 PM
Replies: 2
Views: 2,863
Posted By Suebee
Hey all, I love Wii. I Do use balance board and...

Hey all, I love Wii. I Do use balance board and "sports" games that require arm movements. I play with my kids occassionally. Unfortunately wii was discontinued. (I would expect a real gamer to...
Forum: General 10-29-2019, 01:12 PM
Replies: 70
Views: 20,322
Posted By Suebee
Vaccines before treatment?

AM, great idea about updating vaccines before starting treatment. What vaccines did you update? Tetanus seems like a good one. I had last round of vaccines when I entered grad school, awhile ago...
Forum: General 10-29-2019, 01:04 PM
Replies: 70
Views: 20,322
Posted By Suebee
MS L, thank you for sharing your experience and...

MS L, thank you for sharing your experience and your perseverence. I get strength and courage from this forum, and visualizing you farming pushed me to complete some of my important domestic mom...
Forum: General 10-24-2019, 11:07 PM
Replies: 4
Views: 442
Posted By Suebee
Ok, admittedly Iím way way way above my pay grade...

Ok, admittedly Iím way way way above my pay grade ... but I noticed an ingredient in dimethyl fumarate looks connected to HDL levels so I throw this out there for you science people to analyze...
Forum: General 10-24-2019, 09:09 PM
Replies: 4
Views: 442
Posted By Suebee
I am really confused as to why the HDL/MS slowing...

I am really confused as to why the HDL/MS slowing disease progression connection is being studied in the context of a dmd. Is this because there is no money in studying how fish oil supplements...
Forum: General 10-24-2019, 10:56 AM
Replies: 70
Views: 20,322
Posted By Suebee
Smile AM and MSlaz , thanks for you feedback and...

AM and MSlaz , thanks for you feedback and article. It had good overview of issues. I remembered there was a connection and controversy about the 2 drugs, but not any of the details. I cleared all...
Forum: General 10-22-2019, 08:52 PM
Replies: 70
Views: 20,322
Posted By Suebee
I'm waiting for clearance to start Orceveous. I'm...

I'm waiting for clearance to start Orceveous. I'm excited for possibility I will feel better on this DMD. Are rituximab and oreceveous related? Does anyone know how they are different?
Forum: MS Fitness 10-17-2019, 09:07 PM
Replies: 52
Views: 22,241
Posted By Suebee
Dave great article! I'm glad scientists are...

Dave great article! I'm glad scientists are studying this but I'm unsure why it isn't already part of mainstream protocol for MS patients. Stroke and accident victims get PT with it. Different...
Forum: General 09-29-2019, 12:10 PM
Replies: 2
Views: 750
Posted By Suebee
Iíve had similar experiences as you drillerdou. I...

Iíve had similar experiences as you drillerdou. I think years of chasing the next best thing gives a MSer burnout as well as empty pockets. This leads to more hesitancy to jump at another holistic...
Forum: MS Fitness 09-03-2019, 12:32 PM
Replies: 3
Views: 548
Posted By Suebee
Hi glad to have you on forum. It has helped me...

Hi glad to have you on forum. It has helped me understand MS better than any book or dr. My personal experience with MS is yes an increase of symptoms can occur and last days after. I jokingly...
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