Joining the club no one wants to be a part of

[Daveo]

Hello, wanted to introduce myself and give my back story, look forward to connecting with folks here, was on MSConnection.org, but looking for a different community...

My MS saga started in April of 2015. I have an additional mild skin condition (HS) that is also now thought of being autoimmune. Thankfully mine is very mild, but annoying and been dealing with it since my 20’s. I finally said enough and went to a dermatologist who prescribe a general antibiotic. I started to take that and within a week I had sever vertigo to the point I wasn’t able to drive, and lost feeling on half my face.

We originally thought it was side effects of the antibiotic, so I stopped, but symptoms persisted. By the time 2 weeks rolled around I decided to go to the walkin. They ran a lot of test, blood, ekg, etc. and all looked normal. So they mentioned based on my symptoms, if headaches got worse I needed to go to the ER, as the all the other tests were months out. Next day headache was terrible so we went to the ER. Who quickly got me into a MRI.

After a second MRI with tracing fluid, they came back with a diagnosis of MS. I had 5/6 lesions and 2 were active. They gave me some steroids, got me into sweetish MS center. My perception of my health was completely spun as up to this I was never sick & never went to the doctors.

Since diagnosis I am now on copaxone, every MRI (on 6 month schedule) I have between 2-5 new lesions, and my doctors would like me to step up my drugs into a much more risky side effects, which I am currently still on the fence about. I am strongly going after diet also. Currently on wahls, if folks have interest in diet / recipes etc. hit me up!!

Physically it hasn’t been bad, and can still do most things. I have constant headaches, losing feeling on parts of my body, and random pains that come and go, and brain fog. After about 5/6ish I struggle at being “present” and interacting with family. Historically I have always had strong emotional stability, but over the last year it feels like I am loosing this, I cry at the most ridiculous things, seem to get easily frustrated / angry, and have these swings of (I guess) depression where I am just down on life which seems to last for a few days.

I know it’s not asked, but I hope by talking about it, makes it less when/if I have to face. That said, I wanted to point out the things I am terrified of. I have 2 young children (4/6). I am truly saddened / terrified of not being able to do things with them. Growing up I was very active. Raced skiing, taught snowboarding, scuba diving, varsity tennis, crew, etc. I love hiking, camping. I love working in my yard which is big (5 acers), and I wanted to give our children opportunity to grow up on large property doing things as I have fond memories of my childhood in similar situation.

It will be very difficult for me to cope if I am unable to do these things with my kids. I am fairly young, and my disease is being active (per doctors). I am up to 15+ lesions within 1 year, and seem to continue on 2-4 new ones every 6 months. They are pushing me to jump on more risky drugs, but that decision won't come until December of this year.

I am terrified what life will be like when I am only 45. I am our families income, and wife is stay at home with our kids. We just built our dream house, and my wife could never fetch the income I do. I am terrified of not being able to provide financially for our family. It would plunge us into selling house, and barely making it if relying on wife. I am terrified of going blind. I am terrified of being confined to a wheel chair. I am terrified of my emotional state, and basically pushing my entire family away from me.


So that’s my story … and hope it doesn’t’ need to be added to.

Thanks,
-Dave

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[JerryD]

Hello and welcome Daveo,
My name is Jerry . I am dx'd with PPMS since 2009. I was 51, nearly 52 . I gave up my job the beginning of my MS journey, I couldn't handle the extremely small parts and stuff that are integral for the job . I was able to do many things that are difficult for me to do, now . I have been declining more rapidly in the last year and am no longer able to stand still for more than 10 seconds. I know the apprehension that you are feeling. MS sucks ! That is just a fact. I hope you consider all of the meds that are available . Good luck

[TexasBlue]

Welcome, but sorry for the reason

Hi Daveo, I'm what I or most would call a veteran, as far as having MS for over 20 years. First thing I would like to mention is, if you are still having new lesions show up with tx, you may need a different kind. I'm not saying serious stuff, but that's something for you and your Dr to decide.

Second, please take the DMD (though it may cha he throughout your tx) as long as you can. I stopped years ago due to being able to afford it, and I'm pretty sure, that's what ended up causing my progression. I had to leave my career of working in Occupational Therapy about 4 yrs ago.

Third, I didn't have too many problems for many years. I was a fighter,and kept on a going. I was married, with two daughters, I worked part/full time, and went to college....and all that goes with that.

Ok enough counting lol. You never know what will happen, and I have really struggled this past year with some changes, that well, I just don't like. That's a big haha, because it doesn't matter what I want.

Support and "some" understanding from loved ones is important, but sometimes that can take a while, and its own toll. I personally am going through some things with not being able to take care of some things that I was, and I know it makes it harder on my significant other. I'm female, he's male (just in case lol hard to tell from my user name). I don't know if we ever get "ok" with it, but I/we have to make it tolerable for ourselves to be different.

Anyway, as I said, you never know what will happen, but chances are, you'll have a fair to good chance at things going well, for quite some time.

I have had multiple surgeries (unrelated to MS), in the last 8-10 years, I have hypertension, and degenerative disc disease. I currently have a broken ankle and a bone in my foot. This is the same foot I've had surgery on twice in the last 3 years, from it being broken on the opposite side. Let me add, these are the only times I have been dependent on a wheelchair phew.

Ok, sorry to go out in left field a little lol. I wish you luck, blessings, and a good journey. Also get in the chat room sometime.

[SNOOPY]

Hello Daveo and welcome to MSWorld.

All of us have our own stories and all of us, on some level, would be able to relate to what you have written. I am sorry you have a diagnosis of MS but glad you found your way here.

I am terrified of my emotional state, and basically pushing my entire family away from me.

Have you considered seeing a mental health professional (counselor) who works with those that have chronic illnesses. The grieving process, much like that of losing a loved one, happens when diagnosed with MS and is quite common. Unfortunately, with MS we can experience the grieving process throughout our life with MS as our abilities/disabilities change.

Depression can be situational and an antidepressant can be quite helpful.

5 stages of grief:
http://psychcentral.com/lib/the-5-st...oss-and-grief/

Take care

[Daveo]

Thanks everyone for the warm welcome!!

To answer some questions:
@snoppy, yes seeing a phycologist to try and get some strategies in place, without going down the drug route, but I must admit it isn't easy.

@texas blue, thanks for going into left field, I can totally relate 8-), sorry to hear on your recent difficulties and hope it gets better.

@JerryD, sorry to hear and thanks for the info,

Clearly folks with experience, and I just read a thread on this, but would love to ask folks that have responded, how do you go about balancing risk of drug? (let me know if I should ask this in the appropriate channel)

In short my Dr as saying due to my age (36 M), and current progression, they have a low tolerance for lesions, and should be taking the risk of higher risk profile drugs. Their logic is primarily slow progression to a crawl, as it's a marathon. So they tried to get me into Ocrelizumab trials, but I declined. They are hoping it's FDA approved in Dec and would want me to go on that at then end of the year.

As others state, this decision just sucks, is a total guess or what you feel comfortable with, but would love to hear how other approach it.

Thanks,
-Dave

[TexasBlue]

The drug question

Dave, as far as the drugs, I won't be of much assistance, I don't think. I used Avonex many years ago, and was satisfied with results, as little to no progression....until I stopped it several year ago, due to finances. Even with that one, there were risk, but not as much like these newer ones. The most I had to deal with was flu like symptoms each week.

There are so many new meds out there for MS, I hadn't even heard of some until recently. A lot of them have some pretty scary risk, when you look at it. However, so does any medication we take...I mean have you ever read all the side effects on some of your prescriptions lol. It will make us all freak out.

Just like I have to do with my blood pressure medicine (I take three), I have to look at it, as I can't live without it. There are some crappy side effects with these kinds of meds (the BP meds) , but most are not life threatening.

Some of the DMD I've seen and read about, really through me for a loop, with risks and side effects. Because they have greater risk, including things that could cause death, does that mean they are that much better than something else? I don't know.

See I told you I probably can't help much, but maybe a little food for thought. I don't like where I am right now in the disease, but personally I don't know if I would consider some of the heavys right now.

Much luck, but mostly blessings from God to you.

[KateA2]

Hi Dave, you're the same age that I was when diagnosed (5 years ago). I also started on Copaxone, but switched to Tecfidera. There are lots of treatments options between Copaxone and experimental drug trials...Frankly, I'm surprised it was broached as you've not tried other therapies yet.

Personally, and this is just MY opinion, I'd try to maintain as much healthy tissue as possible. Which means lessening inflammation/lesion-load as things are currently measured. Hit MS as hard as your risk-assessment will allow. For me, Tecfidera has taken me from 2 moderate-to bad relapses in 2 years (on Copaxone) to a clear MRI and only one mild relapse in the last 3+ years.

First year is especially tough...trying to wrap one's head around things. I feel for you, hang in and let us know how you're doing.

[Carolinemf]

Hi Dave,
I'm not sure what i'd be doing in your place. Every thing is a personal choice.
But I do see some logic in the recommendations you've been given in regard to your age and rate of progression.
At the moment i'm struggling to decide if the pro's outway the cons in regard to changing from Tysarbri to Lemtrada. The thing is that if I wasn't 49, hadn't been fighting ms for over 30 years and didn't have some other medical concerns to factor in with the risks- I'd jump at the opportunity to access one of the strongest drugs on the market to increase the possibility of slowing it up as much as possible. The thing is that there aren't really any treatments once you've progressed to a certain stage. It's the same with cancer etc - hit it as early as possible and hit it hard- for the best results.

I kinda think i've missed the boat with treating mine aggressively but maybe you haven't.

Ask lot's of questions and make an informed decision for you.

All the best.

[goodsea]

Hi Dave. I just joined too.

Hi Dave,

Your post resonated with me in many ways; on the parenting front I've been thinking the same thing. I'm a 45 yo (turn 46 in 2 weeks), have 2 daughters (12 and 6), and there's so many things that I feel like I'm denying them because I can't do it. Or my go-to thought is "am I going to be able to handle that?" And I HATE that I'm framing activities with my needs in my mind (though absolutely necessary), instead of just moving forward with creating a carefree childhood. I was carefree when I was young too, skiing, waterskiing, ice skating. I want them to have those things.

I grapple with this. I think, it's okay. They have a very good childhood. These imperfections and challenges of their mom are shaping them into sensitive human beings. It's teaching them to handle tough situations. That not everything is going to be perfect and every day fun. And that's OKAY. They are loved.

I'm not any assistance on the drugs; this is something I'm trying to navigate too. And one reason that I'm reaching out. But welcome aboard, I look forward to talking with you more. And I wish you peace on this journey.

Christine