Hello

New members should feel free to introduce themselves here
Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Fri Oct 12, 2018 11:29 am

Take my body but not my cup of coffee :p
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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jimmylegs
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Posts: 12072
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Post by jimmylegs » Fri Oct 12, 2018 11:40 am

pry it from my disconcertingly-not-cold, dead, well-caffeinated hands ;)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Fri Oct 26, 2018 8:21 am

I had a HUGE food poisoning, rested 3 days and no relapse. Stable fever of 38 degrees Celcius.

My new regimen includes Propolis. Maybe another undiscovered natural remedy? I use %30 pure liquid form. Daily recommended intake is 10+ drops. I take 5 drops.
https://www.mdpi.com/1420-3049/19/12/19610/pdf

Your MS song of the month: Avenged Sevenfold - Unbound (The wild ride)


This ride that takes me through life
Leads me into darkness but emerges into light
No one can ever slow me down
I'll stay unbound
Gonna drink coffee now, ciao ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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jimmylegs
Volunteer Moderator
Posts: 12072
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Post by jimmylegs » Fri Oct 26, 2018 1:41 pm

:-BD
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Wed Dec 26, 2018 11:50 am

Winter is here :)

My ex-wife uses my kids as biological weapons (Come on NATO, do your job please) Last week I spent some great time with them. Later I had some weird fever, 38.6 degrees Celcius. Funny thing was my GF had fever too. This week we have realized that we experienced hand, foot and mouth disease because of kids. Kinda scary but no damage :D

Waiting for year #2 checks. Almost same regimen. Cheers, take care.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

jaswadd32
Newbie
Posts: 5
Joined: Thu Mar 07, 2019 5:54 am

Re: Hello

Post by jaswadd32 » Thu Mar 07, 2019 3:17 pm

Hello my name is Jasmine I was diagnosed with Ms in 2015 I suffer from left leg weakness and left foot drop. I'm currently doing the physical therapy and anytime that I do the physical therapy my therapist always has me use either a walkaide device or bioness device unfortunately my insurance company refuses to pay for either for me I've been going online trying to see if I can find one of these devices for a decent price that's not so expensive but either I miss out on the auctions or the devices are just extremely expensive so I was trying to see if anyone up here may happen to know of somewhere for me to either search for on the internet or so where I can go to get a walkaide device that's not too expensive, my email address is jasminewaddler26@gmail.com, so if anyone has any ideas or suggestions for me feel free to hi there respond to this or you can email me thank you

ElliotB
Family Elder
Posts: 1938
Joined: Mon Feb 03, 2014 4:08 pm

Re: Hello

Post by ElliotB » Thu Mar 07, 2019 3:32 pm

"my insurance company refuses to pay"

Have they given a reason?

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NHE
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Joined: Sat Nov 20, 2004 3:00 pm
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Re: Hello

Post by NHE » Thu Mar 07, 2019 4:19 pm

Hi Jasmine,
Welcome to ThisIsMS. Here is another member's experience with a used Bioness. They were unsuccessful in getting it reprogrammed.

viewtopic.php?p=249892#p249892
r7111 wrote:I feel everyone should be aware of what they are getting into by buying one. Mine does not work for me, might work for others but Bioness prevents you from selling it by not selling you the supplies that are necessary to use it and wont program a resold unit. This is from Bioness when I asked to sell mine;
“Unfortunately you cannot sell your L300 devices to another person. “They are a Class A medical device which require a medical prescription. For example, let’s say you had pain pills prescribed to you and when you were done with them, you had 10 left over pills. You can’t get on Craigslist nor eBay and sell your left over oxycodone…it’s illegal. Selling your L300s to other people is illegal in the exact same way. “(from Bioness)

This has been my experience and I just want others to be aware

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Mon Apr 08, 2019 5:05 am

Hi all,

Today I have visited my neuro. Right feet Babinski Sign positive, some days I feel weird about leg-arm movement coordination. She says I am EDSS 0.5/1. Injection sites are OK. So I am clinically very good despite my very heavy first attack of EDSS 5.5/6. She wants to see my MRI results 10 days later.

Lots of blood tests:

Total blood count is all perfect. Hemoglobin 14.2 g/dL
CRP 0.2 mg/L
Ig A 0.83 g/L
My liver is all good, AST 24 U/L, ALP 46 U/L, GGT 52 U/L
Blood sugar is all good. Fasting sugar level 99 mg/dL
Cholesterol is better but needs work. HDL 36 mg/dL, LDL 133 mg/dL, triglycerides 222 mg/dL
Thyroid is good, TSH 0.893 mU/L

Now the important ones:

D3 is 60.5 µg/L, 5000 IU winter dose, 4000 IU summer dose, daily
Calcium is 9.9 mg/dL, still borderline high and needs more calcium care
Magnesium is 2.12 mg/dL, daily 400-600 mg
B12 is 500 µg/L, daily 2500 mcg, gonna increase it
Ferritin is 664,7 µg/L, the last result was 584. I do not understand the increase. Maybe I had a minor attack. MRI results will tell.

Body weight is 73 kilograms. Still drinking coffee and eating almost everything but dairy. I am physically active.

I can't wait for MRIs. Take care ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Sun Apr 14, 2019 7:13 am

Zinc is very low, 78. I am going to double zinc and copper. 15 days later I will test again.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

User avatar
jimmylegs
Volunteer Moderator
Posts: 12072
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Post by jimmylegs » Sun Apr 14, 2019 7:07 pm

good idea to step up the intake. it will be interesting to learn what effect 15 days of the higher dose will have. i'm thinking back to my doc telling me to take 100mg/d for a month, but that was when my level was 56.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Wed Apr 17, 2019 6:22 am

2 years and 2 months after diagnosis. I am still NEDA after MRI. Happily living with MS. Big thanks to J and all friends here :YMHUG:
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

User avatar
jimmylegs
Volunteer Moderator
Posts: 12072
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Post by jimmylegs » Wed Apr 17, 2019 7:01 am

way to go!!! (*) (*) (*) (*) (*)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Sat May 04, 2019 1:48 pm

I decreased my anti-depressant citoplaram to half the dose 3 days ago. Way too many effects. Anxiety, stress, emotions, all have increased. I know this will take some time and I want to discontinue citoplaram.

I am about to be a Q-Grader (Coffee tasting expert) in June. Yea MS and coffee. Why not? ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

Zyklon
Family Elder
Posts: 339
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon » Thu May 09, 2019 1:25 am

I am much better now. Still a little bit emotional, no signs of panic attacks but my sleep cycle is messed up. I plan to stay on 10 mg for a month and halve again.

These coffee exams will unveil if I have any taste/smell/sensory loss.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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