General Discussion

LiberalLoner

(11,467 posts)

46. I am so sorry. I have Multiple Sclerosis, too.

Wed Jul 22, 2015, 12:01 PM

Jul 2015

The first thing you need to know: Life goes on. Life is still worth living.

I've had MS for decades, but it took until a couple years ago, to finally get diagnosed correctly. I was in the neuro ICU at Walter Reed for ten days with what was clearly Transverse Myelitis, but was misdiagnosed as GBS because they could not do an MRI on me at that time and because my doctor was a bit incompetent.

Once I had an implant removed and was finally able to get an MRI done, the massive damage was shown. My spinal cord in particular is screwed, LOL.

It actually was a HUGE relief to get diagnosed. I have been fighting weird symptoms and crippling fatigue for so so so long...docs all telling me it was depression, all in my head....finally with a diagnosis I had an answer and people accepted what I was saying as far as symptoms went and my struggles.

It might help for you to join an MS support group. Lots of them around. There are some good books about MS, too. It helped me to read books written by other MSers because it felt like having a friend there, who understood, explaining stuff to me.

I inject Copaxone daily. I was scared the first few times but now it's just routine. Within about a week it became truly no big deal. I got big itchy welts at first but my body adjusted and now it's not so bad at all.

Really once you adjust to your diagnosis, you will find your life goes on and things are okay. I mean yeah, you have symptoms, bad spells and better times, and symptoms accumulate over time, but it's really all okay.

In fact I love my life now. The diagnosis gave me the strength to say "no" to people and activities that were making me miserable.

Now I spend much more time doing what I love most. I feel content and grateful for every single day.

I hope you will find some peace of mind too, in the midst of this disease.

I can PM you my phone number if you would like to talk on the phone some. Just let me know.

((((((Hugs)))))))

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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