General Discussion

Thor_MN

(11,843 posts)

143. Breath. Read. Contact the MS Society.

Wed Jul 22, 2015, 08:50 PM

Jul 2015

It's not a sirens and lights to the ER thing.

I've ridden the Minnesota MS 150 the last 6 years and have known several people with MS. My high school friend, who had an advanced case, finally got into a trial this spring for Lemtrada. Unfortunately, he had a negative outcome that is not listed as a side effect of Lemtrada and passed two weeks before the ride. Still working through emotions and glad I'm typing rather than talking.

So no sugar coating here... I really think that he must have had some other health problem going on as my reading indicates what happened was not a direct result of his treatment.

One of my Grandparent's neighbors had MS and I later worked at the Nursing home where Mildred lived. She was one of the most beautiful and nicest persons I have known in my life. Her MS really didn't affect her outlook on life.

The daughter of my neighbor across the street has MS and I never would have known if they hadn't noticed that I was getting ready for the ride.

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Got some devastating news yesterday - I have Multiple Sclerosis [View all] dorkzilla Jul 2015 OP

Hang in there. spooky3 Jul 2015 #1

Echoing the positive vibes...you can beat this thing! InAbLuEsTaTe Jul 2015 #103

Make sure it isn't Lyme disease. Wilms Jul 2015 #2

I agree...you ( I meant the OP) are in ground zero for Lyme. Lochloosa Jul 2015 #4

I�ve had Lyme twice already :( dorkzilla Jul 2015 #7

not clear on what you said....link between Epstein-Barr and MS dixiegrrrrl Jul 2015 #14

Sorry - Epstein-Barr and MS dorkzilla Jul 2015 #21

Demyelinating can present in Lyme cases. Wilms Jul 2015 #144

OK. It just makes me nervous. Wilms Jul 2015 #17

oh I totally get that! dorkzilla Jul 2015 #23

I work in radiology. Laffy Kat Jul 2015 #158

Outstanding advice. nt MADem Jul 2015 #129

This is excellent advice. But I would like to add - FourScore Jul 2015 #205

That sounds right to me. Wilms Jul 2015 #206

my aunt had MS for 60 years hollysmom Jul 2015 #3

+1000 CountAllVotes Jul 2015 #153

Sorry to hear 1939 Jul 2015 #5

Cannabis is a good start. London Lover Man Jul 2015 #6

very interesting dorkzilla Jul 2015 #10

"I will share this with my doctor." < That's very generous of you. <G>n/t jtuck004 Jul 2015 #56

Hahahaha - she can have my wine but if I get a MMJ card its MINE ALL MINE!!!! LOL! dorkzilla Jul 2015 #57

Laughter helps too. <G> We wish you well. n/t jtuck004 Jul 2015 #59

I second this. Check out what protocols there are. Good luck. Eleanors38 Jul 2015 #80

Don't Panic! ProfessorGAC Jul 2015 #8

You're an inspiration! tblue Jul 2015 #26

I thought my world ended with a Crohn's diagnosis. alfredo Jul 2015 #137

I see what you did there... dorkzilla Jul 2015 #139

Humor is one of your best weapons. alfredo Jul 2015 #145

Follow your doctor's advice closely. Treatment is much better MineralMan Jul 2015 #9

What MM Said ProfessorGAC Jul 2015 #11

Can I ask what kind of MS you have? Sounds like you�ve got Relapsing-Remitting dorkzilla Jul 2015 #15

Really, I'm Closer To Cerebellar ProfessorGAC Jul 2015 #19

Thank you for all that. dorkzilla Jul 2015 #28

Cool! ProfessorGAC Jul 2015 #29

Hope you journal here about it! mntleo2 Jul 2015 #166

Thanks Cat, I�m planning on it! dorkzilla Jul 2015 #167

Thanks Mineral Man! dorkzilla Jul 2015 #12

All the best to you! MineralMan Jul 2015 #13

Thank you! nt dorkzilla Jul 2015 #16

For now, just breathe. jeff47 Jul 2015 #18

Waiting for my doc to inform me as to which flavor, hopefully vanilla dorkzilla Jul 2015 #62

What was the test they performed that confirmed you have it? harun Jul 2015 #172

The one that finally confirmed it was a brain MRI dorkzilla Jul 2015 #176

Thanks for the info! harun Jul 2015 #180

That�s where my doctor thinks the EBV virus came from dorkzilla Jul 2015 #181

Yeah, I had mono when younger and have always worried about that. harun Jul 2015 #182

So are you having any MS-type symptoms? dorkzilla Jul 2015 #184

Like you I have had back and neck problems with a stressful harun Jul 2015 #185

Better safe than sorry dorkzilla Jul 2015 #187

Thanks, peoples experiences with such things really help out! harun Jul 2015 #188

While you are working on the medical aspects, consider the financial ones. lumberjack_jeff Jul 2015 #20

That is great advice dorkzilla Jul 2015 #35

Treatments have vastly improved. Yo_Mama Jul 2015 #111

This message was self-deleted by its author lunasun Jul 2015 #22

I'll ask around. tblue Jul 2015 #24

Thanks! You always do! I love my DU family <3 n/t dorkzilla Jul 2015 #31

MS the PEST! :-/ JaneFordA Jul 2015 #25

I like that prescription! dorkzilla Jul 2015 #30

Keep your chin up, dorkzilla. democrank Jul 2015 #27

Thanks! dorkzilla Jul 2015 #41

I have a friend in his late 60's who was diagnised in his 20's Armstead Jul 2015 #32

A lot of good, sensible advice here. SheilaT Jul 2015 #33

LOL, my well-intentioned and loving but CT-prone brother gave me his advice last night... dorkzilla Jul 2015 #37

Don't panic is good advice. JayhawkSD Jul 2015 #34

If I ever had an advantage, its my chin up attitude and my goofiness dorkzilla Jul 2015 #39

My sister has it. We're light years ahead of where we were Recursion Jul 2015 #36

I�m beginning to understand that, thankfully dorkzilla Jul 2015 #38

i was diagnosed with it in 2011 0rganism Jul 2015 #40

Thank you! dorkzilla Jul 2015 #51

no problem - the key is not to despair 0rganism Jul 2015 #69

Your Vision Came Back From The Neuritis?!? ProfessorGAC Jul 2015 #75

i hear ya - those were some dismal weeks 0rganism Jul 2015 #82

Therein Lies The Difference I Think ProfessorGAC Jul 2015 #105

You will be in my prayers Gothmog Jul 2015 #42

Thank you-it�s much appreciated! dorkzilla Jul 2015 #45

Love and light libodem Jul 2015 #43

That�s great to hear! I hate needles! dorkzilla Jul 2015 #44

I am so sorry. I have Multiple Sclerosis, too. LiberalLoner Jul 2015 #46

That would be great, thank you! dorkzilla Jul 2015 #49

Dr. Terry Wahls - doing advanced MS research Marje Jul 2015 #47

I had forgotten that MS is an auto-immune disease. SheilaT Jul 2015 #98

Dr. Wahls has 20 papers published in professional journals nilram Jul 2015 #121

I did find it a bit odd that when I googled her SheilaT Jul 2015 #147

I hear you... Marje Jul 2015 #214

I second looking into the Wahl's protocol. sense Jul 2015 #165

My dad had it -- Geoff R. Casavant Jul 2015 #48

I have a friend with it. progressoid Jul 2015 #50

2010 diagnosis here blindersoff Jul 2015 #52

This is great information - thank you SO much! dorkzilla Jul 2015 #63

IM injection blindersoff Jul 2015 #84

I Could Just Cut and Paste Your Story For Mine ProfessorGAC Jul 2015 #77

I feel pretty lucky blindersoff Jul 2015 #85

I'm There Too ProfessorGAC Jul 2015 #106

I'm so sorry to hear this geardaddy Jul 2015 #53

That�s pretty much how it feels, geardaddy! dorkzilla Jul 2015 #64

Here's what you need malaise Jul 2015 #54

Aw, malaise, you always know the right thing to do :) dorkzilla Jul 2015 #65

Everybody's path/symptoms are different. Downwinder Jul 2015 #55

Stress - this is going to be the hardest part for me... dorkzilla Jul 2015 #68

Might be why it is showing up now. Downwinder Jul 2015 #86

I�m having a lot of cognitive issues too dorkzilla Jul 2015 #89

Lists and notes are recommended, Downwinder Jul 2015 #92

I do that...then forget where I put them :) dorkzilla Jul 2015 #93

Get a bluetooth ear piece on a smart phone or tablet. Downwinder Jul 2015 #94

I'm very sorry. I know several people with MS. Arugula Latte Jul 2015 #58

My two cents TNNurse Jul 2015 #60

Thank you. You�re a smart lady! dorkzilla Jul 2015 #70

I am fine thanks TNNurse Jul 2015 #78

Funny, that! dorkzilla Jul 2015 #79

My husband has lived with it for 30 years ismnotwasm Jul 2015 #61

Thank you! That�s very generous of you to offer and I may take you up on that! nt dorkzilla Jul 2015 #71

I'm sorry, dorkzilla. nt raccoon Jul 2015 #66

If you�re so sorry why do you keep going into my garbage cans, raccoon? LOL! dorkzilla Jul 2015 #72

I think you live not too far away from me. if you ever need anything msanthrope Jul 2015 #67

Where (generally) are you? dorkzilla Jul 2015 #73

Westchester County...... and I'm serious if you need something just PM me. nt msanthrope Jul 2015 #117

Thank you so much for your very kind offer! dorkzilla Jul 2015 #120

Take some deep breaths. I have no advice and no sage words riderinthestorm Jul 2015 #74

That�s the best therapy anyway! dorkzilla Jul 2015 #76

Medical Marijuana can stop the progression if caught early enough�. blm Jul 2015 #81

So so sorry about your niece. dorkzilla Jul 2015 #88

diagnosed in her late teens, passed when she was 38. blm Jul 2015 #113

My sister was diagnosed about six years ago sir pball Jul 2015 #83

I have MS, diagnosed in 1989 after seven years of visits to one doctor or another... DonViejo Jul 2015 #87

Hang in there. myrna minx Jul 2015 #90

The only 'true method' to determine MS is the spinal tap benld74 Jul 2015 #91

Here's the link to a book that might help arikara Jul 2015 #95

many good vibes to you! steve2470 Jul 2015 #96

Hugs nadinbrzezinski Jul 2015 #97

Thank you dorkzilla Jul 2015 #100

hugs nadinbrzezinski Jul 2015 #101

If it's any comfort to you, it's not necessarily debilitating Ex Lurker Jul 2015 #99

If I thought I couldn�t travel anymore, I�d off myself dorkzilla Jul 2015 #104

sending you good vibes Liberal_in_LA Jul 2015 #102

Praying for you dorkzilla. Kingofalldems Jul 2015 #107

It was bad for my mother LittleBlue Jul 2015 #108

those are the stories i remember hearing growing up dorkzilla Jul 2015 #109

I have two autoimmune diseases TBF Jul 2015 #110

I've had MS for 17 years, you can PM me if you like. mr blur Jul 2015 #112

No advice, dorkzilla, just good thoughts for you. beam me up scottie Jul 2015 #114

Thanks bmus dorkzilla Jul 2015 #115

LOL! I love playing the atheist card. beam me up scottie Jul 2015 #116

LOL! Well in their case I don�t even think they think they�re helping dorkzilla Jul 2015 #118

That bad, eh? beam me up scottie Jul 2015 #122

They�re 3000 miles away so... dorkzilla Jul 2015 #124

You have the right attitude! beam me up scottie Jul 2015 #126

It helps to be a little crazy dorkzilla Jul 2015 #128

I got some of those when diagnosed with prostate cancer Nac Mac Feegle Jul 2015 #140

Lol! That's funny. beam me up scottie Jul 2015 #142

Condolences and best wishes Jack Rabbit Jul 2015 #119

Just wanted to add my sympathy. ladyVet Jul 2015 #123

Thanks! dorkzilla Jul 2015 #127

Best wishes to you ladyVet. veness Jul 2015 #135

k&r... spanone Jul 2015 #125

Cannabis Treatment Info SHRED Jul 2015 #130

I have MS, and have had vertigo episodes dating back to the 1980's. silvershadow Jul 2015 #131

I�m trying to stay off the internet, but the internet is coming to me LOL dorkzilla Jul 2015 #138

Here's wishing you a lot of serious, bigtime... DFW Jul 2015 #132

That would be awesome! dorkzilla Jul 2015 #169

I use cannabis for chronic pain, azmom Jul 2015 #133

I could fill a post full of, "hang in there", "it's not that bad", "think positive" Glassunion Jul 2015 #134

medical marijuana wiil help LOTS. A certain strain. Go to CO TheNutcracker Jul 2015 #136

There are so many possible outcomes--hope people with some experience have good feedback eridani Jul 2015 #141

Breath. Read. Contact the MS Society. Thor_MN Jul 2015 #143

Live in the PacNw? AtheistCrusader Jul 2015 #146

Hey there AC! dorkzilla Jul 2015 #148

We have a higher than normal incidence of it here in the NWpart of it is genetic AtheistCrusader Jul 2015 #186

MS tends to run higher in people of Northern European descent dorkzilla Jul 2015 #189

I'm guessing ultimately it'll be multiple causes, or multiple factors driving a cause. AtheistCrusader Jul 2015 #197

I know several people with MS. One has lived with it since the mid '80s. 1monster Jul 2015 #149

Hugs and peace to you. Ilsa Jul 2015 #150

Very sorry to hear! Hang in there Cane4Dems Jul 2015 #151

Have had MS for many years CountAllVotes Jul 2015 #152

My mother has end-stage MS LostOne4Ever Jul 2015 #154

Welcome to The Club! blondie58 Jul 2015 #155

I plan on going for a very long walk today.. dorkzilla Jul 2015 #168

I am sorry to hear you have MS davidpdx Jul 2015 #156

This is bad but less so than years ago. Take heart. mikehiggins Jul 2015 #157

�She�ll know who you�re talking about" dorkzilla Jul 2015 #170

My cousin has had MS for the past 30 years. Stellar Jul 2015 #159

My wife is being checked out for MS caraher Jul 2015 #160

I don't have advice but I have hugs. You are in my thoughts. Things have progressed. I have roguevalley Jul 2015 #161

MS is a Latitude Sensitive Disease ... Not a Fan Jul 2015 #162

You might want to read Dr. Terry Wahls' book lady lib Jul 2015 #163

Another poster upthread also recommended dorkzilla Jul 2015 #171

You're welcome. Let me know if lady lib Jul 2015 #193

Best wishes and warm thoughts to you dorkzilla. pablo_marmol Jul 2015 #164

I have MS. Diagnosed about 15 years ago. FlaGranny Jul 2015 #173

An Annoyance ProfessorGAC Jul 2015 #175

I will be 50 in August dorkzilla Jul 2015 #178

I understand. FlaGranny Jul 2015 #212

glad you are doing well Liberal_in_LA Jul 2015 #196

Thank you. FlaGranny Jul 2015 #211

I'm so sorry to read this, dorkzilla. City Lights Jul 2015 #174

MS Diagnosed 3 yrs ago...Trigeminal Neuralgia, too duhneece Jul 2015 #177

Wow, that�s awful, sorry dorkzilla Jul 2015 #179

Good luck. I hope you get the answers you seek. mmonk Jul 2015 #183

Me too--I just spoke to my neuro--MORE TESTS YAY! dorkzilla Jul 2015 #190

As frustrating as tests are, the assessments are important. mmonk Jul 2015 #191

Thank you...i will! n/t dorkzilla Jul 2015 #192

Dorkzilla, I wanted to add something. Arugula Latte Jul 2015 #194

thank you for that affirmation; just what i think dorkzilla Jul 2015 #195

You're welcome. Arugula Latte Jul 2015 #198

"Indolent MS" is what my neurologist called it duhneece Jul 2015 #201

Indeed! Arugula Latte Jul 2015 #202

Do green juicing or green smoothies. Detoxify your body. Get off all grains and processed foods. Dont call me Shirley Jul 2015 #199

I�m looking into the diet aspect now dorkzilla Jul 2015 #203

My Dr was so proud of me today, that it got my blood sugars normal in only one month! Dont call me Shirley Jul 2015 #209

I was just reading the SCD link you sent dorkzilla Jul 2015 #210

Thanks! Very much luck with your quest for health. It's a body mind and soul thing too. Dont call me Shirley Jul 2015 #216

One of my old bosses has MS KamaAina Jul 2015 #200

Mom and republican step-dad? I got those too! dorkzilla Jul 2015 #204

No, Mom is a centrist Dem. KamaAina Jul 2015 #207

My mom is only a Republican because my step-dad is dorkzilla Jul 2015 #208

Dr. Timothy Noakes - My Medical Epiphany Marje Jul 2015 #213

Thanks Marje! dorkzilla Jul 2015 #215