Still in disbelief

[kimwo826]

Good Afternoon All,

I am a 39 year old single mother of 1 adult son and 3teenage children. I was diagnosed with MS in January of this year after the onset of optic neuritis. I have had an MRI of my brain and spine. A total of 6 lesions were found. I have had the spinal tap, evoked potential testing, and lots of blood work. I have been on Copaxone since May. I was scared to start it when it was first prescribed. I still do not like injecting myself everyday! I feel like I have to take a pill for just about everything.

I feel like I am always in disbelief and wondering why this is happening to me. Somedays I just don't know what to do, say. think, or feel. I feel completely normal with the exception of fatigue, headaches, and sometimes confusion(fogginess).

Will things (or my feeling) every get better?

Thanks for listening to me.

[techie]

Welcome

And sorry why you are here.
There is one pill out starts with a G.
I think there is another pill BG 12? that will be coming out next year.
You will have lots of time to get used to shots. Thank goodness it's sub Q! and not Avonex.
All the DMDs have their pros and cons. Sometimes they are hotly debated here.
Good luck on your journey
techie

[Jules A]

Hi and welcome,
Yeah although I accepted my diagnosis very quickly I had a hard time shaking the shock and horror.

I did find the shock wears down with time although the sadness at being diagnosed with something like MS hasn't.

I plan to just keep living life to its fullest for as long as I am able. Hang in there.

[soldier.on]

new diagnosis--positive, but not a "Pollyanna"--striking a balance?

Hi,

I am in the process of finding out how bad it is, treatment options, etc. This is my 3rd medical shock in 3 years, and I am almost out of juice to cope.

Over the last 3 years I have learned I have:

... a genetic problem called "Ehlers-Danlos Syndrome" that disables many people but is fairly mild in me, plus

...CVID, an immunodeficiency that requires monthly IV infusions and disables some people but is fairly mild in me (tho' treatment is the same, in time and cost and side effects), and I already had

...Interstitial Cystitis, a painful incurable bladder disease that disables some people, and has greatly damaged my quality of life since age 11, but is relatively mild compared to those for whom it is fully disabling.

Now the MS is fairly mild, but it appears I have had it for years (which explains how I can be middle-aged and have the --I hope!--RRMS vs PPMS or SPMS--don't know yet) and I am entering a phase of worse and more frequent episodes...

Meanwhile I was just recovering financially from disastrous medical bills from 6 years back (surgery gone wrong) that almost cost me my house, and a whole lot more...dropped out of grad school, etc. Just this month I was reaching a point where I could stop holding my breath for the first time in 8 years...stop just surviving and actually LIVE again.

I saved my house from foreclosure, just bought a newer car (my old being 21 years old!), gone back to school, and still work FT. It's hard, but I thought with careful pacing and prioritizing, I could do it. I hate my current 8-year job, and have gone back to school in a field I'm not crazy about, so that I can get a grad degree in it, and escape my current role...I have just come to the end--2 classes left--of the under-grad 2nd degree (which I didn't want, but had to have to prepare for grad school). In fact, I've been doing my grad applications for a month now!

I am exhausted, terrified I'll spend all the money and time (3 more years), and get my hopes up for school changing my life, and then have it all go South yet again, with it almost too late to try again in my early 50's(!)...I am both wanting some shorter work shifts (not officially allowed), and ADA support from work, but scared to tell them lest they pounce on anything resembling "cognitive decline".

They have not been nice about the IC, and my IFMLA hours-per-year allottment is getting low; it will be up to them to keep me on or not if I max out, so demanding or even begging for allowances of any kind is very risky.

I know I will not be okay with being grateful I can still work, etc., if it means I have to keep this health-damaging, soul-crushing, stullifyingly boring, but still very demanding, detail-oriented, high-pressure and stressful job, nor be able to recover financially from the burden of student loans if I can't earn more with a higher degree by finishing grad school...nor even get my mortgage out from "underwater (negative equity)" if I have to stop school now and live on my current income--or less, if my hours decrease.

I've just been reassigned to a work team with a supervisor who prides herself on catching errors other supervisors miss, and in axing those others would be too soft-hearted to let go, by catching every error they make, and pressuring them to leave or "paper-trailing" them out the door. And while I have been praised for clinical judgment and client rapport, productivity is job #1 there, and mine is mediocre.

I have family who care, two sisters in a nearby state, but one is disabled for 20 years now from an MS-like condition. It seems insensitive to whine about my symptoms and situation in the light of that; although she is fully mobile, etc. and just can't hold a job, she suffers poverty and pain for it, and has lost part of her sight.

The other is great (to my undying gratitude) when you're sobbing the day/hour you first learn the diagnosis, as I did last week. But she is illness-phobic since childhood, due to a traumatic experience with our mother's health. So she disappears after that first day or 2, avoiding even routine contact, or what could be called "follow-up check-ins" to see if you're still okay, or learn your next step in treatment/life-planning.

(She doesn't do it on purpose, and I know she loves me; but her health is generally pretty good, though not great, and she has always felt guilty about this. She has also, in the past, usually been very uneasy, and even put off by, or scornful of, others' medical issues, especially if they seem needy, whiny, or to be using them as "excuses" not to meet life's demands.

...And when she can bear to listen, she is often unilaterally, sometimes unrealistically, hearty in her "positive outlook" comments and prognoses, to the point that you realize she's not going to let you entertain the idea you won't be "JUST FINE" and "AROUND FOREVER"--at least not where she can bear to hear.

You might hear, too, you might be glad that you have some aspects of the disease because of "side benefits". An example would be losing your sense of smell and never having to experience nasty stinky smells ever again. Never mind that you can't smell flowers, clean clothes, a baby's skin, or woodsmoke ever again, either. She tries to be no-nonsense practical, plus light-hearted and funny, but sometimes it's just...not. Not the right time, not realistic, and for sure not funny.

...And that's really hard, because in other areas of life, she's the one I go to for level-headed, humorous and practical advice and shared opinions about other things...and I offer her the same in return, but am able to deal with illness and fears others, including she, might have--as she cannot.)

I need to hear from other MID-LIFE NURSES, or medical people, especially, but all of you who are hoping to keep working, can't imagine --yet--NOT doing so, but don't have support, nor financial help. After a decade of agonizing 55-60 hours/week over-time, work abuse, financial shame and terror, etc., etc., all of which probably caused both the CVID and MS, I am finally getting past it, and very scared it's all coming right back again.

I was just re-blossoming, you could say, albeit much older, and sometimes looking and feeling it, from all these medical disasters. I was just cautiously enjoying the renewal of just HAVING the luxury of financial and occupational hopes and dreams, and am terrified they--I--will crash and burn AGAIN....I'm so alone, as there is no one I can tell yet in my private life, nor at work.

I have some friends, but due to my dreadful schedule, and having been new in the city when it all crashed, I have no close friends here (yet), nor any casual ones whom I can trust not to blab. Maybe even avoid me, or who knows what. I've been dating a little, for the first time in years, but it's too soon for sharing.

I had just been planning to get back out there, once these last 2 under-grad courses are finished, and make some REAL friends, with shared interests, volunteer, write more poetry, etc. I still will, but...

I have a counselor who---ironic laugh--was hired to help me manage the CVID at work and without letting it ruin my dreams. (It seems so secondary and minor now, though it is itself a risk factor for MS.) I live in mid-east Missouri and welcome any support group info.

[pnowsitall]

managing the ms

Hi Kim,

I'm 31 yrs old, male, and also just went throught the same testing and fate as you did go through. I was diagnosed Dec 2011, and also felt it was a mis-diagnosis or that someone messed a test up.

The injections are awful, even the subcutaneous. I cannot stand needles, and cannot wait to get the pill versions. There is a new pill out approved by the FDA which starts with an A, I think Aubagion or something, and then BG12 next year. This diagnosis definitely has caused good and bad in me. I have learned that this is a phase in life that we have to manage and adapt to. But, it is a phase where we should get closer with people.

I started Rebit, not copaxone, so I do the injections 3x a week. Let me know how you are doing, if you have any symptoms, etc. I initially just had an optic neuritis where my right eye hurt, but don't know what else to expect.

Phil

[BigA]

Kim,

I think things will get better. If you only had optic neuritis and you have not had additional exacerbations and the fact that you're on copaxone are all good signs.

People tend to not want to say anything positive, but I think you have a good possibility to live a normal life. You might want to check out this book: I think it's the best thing to read, even if you don't go on the diet, the explanations and recommendations are the best.

http://www.amazon.com/Overcoming-Mul...linek+multiple

Someone told me the first year is the hardest, that you're "in the wilderness" and it's true. Keep it up and when you have a year under your belt, you will be better equipped to deal with it.

Also, if you do choose to do the diet, you will definitely have more energy, be healthier and more attractive The promise of the diet is also lower rates of exacerbation and progression.


*I'm not a doctor blah blah blah and you know that. Wait, I am a doctor, no I'm not don't listen to him.

[hunterd]

Amazon.com will donate 5% of purchases made to MSWorld when you shop via the link below.

http://www.amazon.com/gp/homepage.ht...2Aentries%2A=0
This link can also be found on our Donate page; the tab is at the top of every page.

Do you have Amazon.com bookmarked in Your Favorites?
Replace your saved bookmark with this link! I did!