Newbies Lounge Check-in, April Fools 2014

[gomer]

Welcome to your Newbies Lounge
for MS newbies, newbies at heart, or ole time MSers just want to help.

Being a newbie can be just as scary and lonely as being in Limbo Land. When I first got my formal MS dx, I felt lost, alone and tossed into a sea of hungry sharks. For some, the MS Dx is a shock, for others its the end of a long, sometimes very long drawn out road just to get a Dx, any Dx.

As a newbie there will options to consider, do I take a DMD or if I do, which one. What next, what can I expect is another common question.

Come on in, relax, unwind, decompress and stay a spell. Share your ups and downs, even vent away on our super virtual soap-box if you wish. Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends, friends that understand. We have a virtual soap box, feel free to vent anytime.

We also have fresh cookies, (big Chocoholic here) and red velvet brownies, just follow the fresh aroma of fresh coffee or just hang around visit and enjoy our company.

PLEASE.... Let US know how YOU, a member of our MS newbies family is doing.

Have a QUESTION? Please don't be shy........
The only dumb stupid question........is the one NOT asked.

Any Dr. apts tests etc coming up?

I have a heart stress test coming up this week (not MS related) . Last weekend I ended up in ER early Sunday morning after no sleep Sat night due to chest pains. I have valve insuffiency (regurgitation) in both my mitral & tricuspid valves due to Rheumatic fever.

On a more positive note, my new wheel chair arrived after nearly a year's delay (typical VA). You can read more about it over in the Assistive Devices section.


Doc Gomer Sir Falls-a-lot also rolls -a-lot
........(just slightly imperfect).....

Mod-Note: this replaces previous newbies sticky

[GrammySue]

Can a first attack last 8 months?

Can a first attack (DX RRMS) of symptoms last 8 months?
How can a neuro really know your correct DX after one MRI?

[Kaitar]

April is Quiet

Hi All who read this Sticky Thread,

I was Dx'd April 3rd! Knew it was probably coming. Kinda relieved it's not a few of the more immediately nasty possibilities that were left on the list of possibilities.

According to my Neuro, I've had MS for a long time. I have MANY scars in my Brain. The one that sent me on this journey was the one on the spine that caused this relapse I guess since I have had it a LONG time.

Anyway, I now thing several past experiences that were attributed to Epstein Barr virus flair ups were actually other relapses since my primary symptom was fatigue. I have IBS-D that likes to come and go too. I wonder if that's related to the MS (didn't get it until grad school).

My diagnosis took one month and it was easy. Just 3 MRIs and a ton of blood work. To be sure I emailed the MRIs to my sister's (who has PPMS) MS specialist and they agreed with the DX just based on the MRIs. I am very happy I got to avoid the LP. They said I would have bands since they could SEE the lesion in the spine.

I am really happy it didn't take long, I am a horrible waiter. I really suck at patience. It's something I need to work on as I am a lot slower right now than I am used to.

I know a lot about MS because my sister has had PPMS for 9 years. I need to learn about RRMS though, don't know much on this variant, but I guess I am catching up.

No appointments this month, just playing phone tag with Shared Solutions for the Copaxone.

[MarySunshine]

Grammy- My first year with MS was the worst year of it. I have permanent problems from the flares. Idk if a flare can last 8 months ,but it seems likely. Hope you feel better soon.

Gomer- I have a blog post titled "GOMER's Day". Some of your stories remind me of my own struggles with the ER. Hope you are feeling well.

As for my update.....My Neuro said that my MS is not the only thing lurking beneath the surface, so I will be going for more testing before I decide on treatment. It may be easier to treat all of my cooties with one or 2 meds. I feel rough, but life is good.

[gomer]

WELCOME GrammySue......

Good question. My first brain MRI showed long standing classic MS Dawson's fingers. But, at the time they were not even considering MS and mostly ignored with the phrase CNS issue, investigate if warranted....as if multiple falls requiring surgeries was not enough???

Part of a MS Dx also depends on clinical Hx/records.
Not all MS patients present with easy classic MS looking lesions. MS is complicated to diagnose and many mimics also need to be filtered out.

You might want to look up/google McDonald criteria for MS.

Gomer

[gomer]

MaryS..... "Idk if a flare can last 8 months ,but it seems likely" ..... You just reminded me, I had one that lasted months, at least 4 or 5, maybe more. I felt like a dead man walking and the VA doc just told me to use a cane and take B12.

======
"Gomer- I have a blog post titled "GOMER's Day". Some of your stories remind me of my own struggles with the ER."

WOOPIE woo... where is MY blog? (I wanna read it)

"Hope you are feeling well."
Well? I am not feeling bad, some minor chest discomfort, left side of course. I go tomorrow for a chemical stress test, can not do the real physical thing. For me its a double worry. afraid they will not find what it is, yet afraid they will and not be an easy fix. I had this test a little over a year ago, failed the test but not too bad(??).

Last year I got SICK during the stress test. I would rather have the heart valve test instead, that one is easy-peasy by comparison. In other words I would rather they watch my mitral & tricuspid valves regurgitate on a color display, than me do it all over me and the equipment....what a BIG BIG mess that was.

I hope I don't do too bad and maybe just a med increase will help. I have been taking 50% higher Coreg dose for a week now and seems to help some.

"As for my update.....My Neuro said that my MS is not the only thing lurking beneath the surface,"

You are not alone on that one not by a long shot. I also have diabetes, psoriasis etc. MY old dermatologist said my psoriasis varies with auto-immune activity level. (maybe your IBS does as well) It's been better since on Copaxone, so has my diabetes.


Gomer

[hsmaldo]

Just checking in

Sorry I've been in and out and generally not around too much. Sometimes it's easier to stay away and try not to think about the possiblity of MS and those are the times that I stay away from here!

Other times, when I get get scared or overwhelmed, I come back for support.

And yet other times, when I'm feeling stronger, I come back to lend support!

My updates here: I've been on Tecfidera for about 9 months now and have flushing or slight naseua very rarely--like once every 2-3 months. So on the side effect end of it, I'm tolerating Tecfidera VERY well.

I go for a brain MRI with and without contrast on Friday. I'll also be getting my blood drawn to see how I'm REALLY tolerating Tecfidera! Hopefully everything comes back within the "normal" ranges!

I've decided to get off the sidelines and have joined up for several MS walks. The first is the 5 mile MS Walk on April 27. Then, on May 3, I'm walking in a 25K MS Walk. I'm currently raising money for that and trying to train.

I've got some incredible foot pain going on, but not from MS, rather from something called Morton's neuroma. I have a few of them in my right foot and while in describing the symptoms (numb/tingling toes and sharp shooting paiin), it is directly related to walking and putting pressure on my foot.

My podiatrist ordered new orthotics for me and they'll hopefully be ready to be picked up on Friday. Until then, I'm not walking and just hobbling around pitifully!

I have my next follow-up appointment with my neuro on April 22nd where we'll discuss the results of my bloodwork and MRI.

I'll try to come back and update with those results!

Gomer--I'm glad you finally got your new set of wheels!!

Kaitar--Welcome! I'm glad they were able to diagnose without the lumbar puncture. While mine went smoothly with no ill effects, it's still not a fun procedure! I hope you're able to get in touch with the Copaxone people soon!!

[MarySunshine]

Gomer- You should definitely have a blog! Or a book for that matter. Let me know when I can get my autographed copy.

(If you want to read my blog, just click on my homepage and then click on the left upper corner where it shows additional posts...Gomer's day is from last year. You may also enjoy "unreasonable accommodations".)

And you're right about the copaxone, my Neuro said it works for a number of autoimmune diseases. He just wants to collect certain cells that will help identify which MAB I may need in the future.

[gomer]

Gomer survived!

I had my stress test today and it was easier than last time. I came close to loosing it, but didn't. This time they gave me a BIG plastic container, just in case. It was also a bit different than last time. They have a new imaging machine as well.

Gomer dropping just a quckie note........