MS just plain Sucks

[bonzo1968]

Sorry I just need to vent and it seems writing on a message board makes me feel better. I actually have never posted here before. I am more of an observer. I was diagnosed last November from Optic Neuritis. I honestly laughed at the doctors when they told me. It wasn't until May when I woke up and my left arm was dead and from then on I didn't laugh too much.

Since then I have had 4 exacerbations. The latest one has been I have no feeling from my ankle down and I cant move it. I am 39 year old male that has a great wife and 5 gorgeous kids from the ages of 5-12. Unfortunately, I own a Landscape company that requires me to be hands on.

It was the worst 6 months of my life, I could barely get through a 3 hour day let alone 8-10. The last week of work before Winter I had to have fallen 6 or 7 times for no damn reason. I feel like I talk to my Neurologist every day. I have been on Copaxone for 8 months and it hasn't done anything. He also took me off Vicodin and put me on Methadone 5X a day. Granted it really helps the pain and lets me move in the morning but that stuff scares me to death.

I am just not the same "Kevin" anymore and like the title states it just plain sucks. I honestly am not depressed, as I am a very confident and pretty sure of himself kind of guy but this is taking a toll on me recently. Its only been a year I cant imagine doing this everyday for the rest of my life. As I am sitting here typing probably nonsense to you good people I have no idea why I even started writing in the first place, lol. So I guess I will stop.

** 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. **

[tracibk]

Amen! MS does suck!! No need to apologize for venting. It feels good to vent and we all get it!

[JerryD]

I know how you feel. I was a competent working man, until 5 years ago. I was surprised by this, energy sucking, disease and my life was turned upside down.
You seem to be handling the MonSter well. Good luck in the new year. Keep on posting.

[MSW1963]

bonzo1968, totally empathize with your 'laughing at the docs' response. My reaction probably would have been the same, only difference is I was in a huge MS attack for aprox. 2yrs, but just looked too darn good for a MS dx. I had MS for several years before my dx was made, Optic Neuritis too many times to count, but thankfully I had great recovery from most of the early attacks, untill I didn't.

I hope everything MS related settles down for you very soon, get your bussiness back on track, but most of all I hope you have great recovery in 2014.

[KatieAgain]

Kevin-It's not nonsense. You are right MS does suck.

Have you talked to your Neuro about another DMD? It seems like those flares are coming at you fast and furious.

[ZSP]

I hear you...and I totally agree. MS sucks big time and has turned my life upside down. I'm unwilling to accept this as my new normal but know it may be regardless of how I feel or what I want.

I wish a better year for you...and for all of us.

[bonzo1968]

Thank you all for the great responses. I'm actually going back Friday so he can take me off copaxone and again try to persuade me to try tysabri. I just don't know what I want to try next. That drug scares the hell out of me but it may be the best. It took a few months for them to convince me to even go get the JC virus test. We shall see. I rather just have a permanent IV hooked into me with Solu-merdrol all day long but even that he will only let me do every 6 weeks. Yes I know its bad for you but so is MS. lol. Something has got to give though because the way its going I can tell im headed for that dreaded *** chair.
For the most part I am pretty upbeat. I am a typical Jersey shore guy(no not those fools you see on TV) who thinks he is god gift,. Thankfully like I said I live for my kids and wife. Im glad I also took the plunge and actually spoke instead of being a silly Peeping Tom.
Also, on the plus side he may consider giving me a pot script instead of this Methadone stuff. But I don't know if I really feel like I want to be stoned everyday like I was in my early 20's again. But hey maybe that will at least bring back my sex drive because as you all know that's a deal breaker with this illness and Meds.

**Moderators Note: letters removed as they violate MS World guideline #4 Keep it clean: even implyed profanity cannot be used.**

[bonzo1968]

** 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. **

Sorry my moderator friend I tend to have bad grammar also when I ramble and to be honest I cant concentrate enough anymore to review what I have written, lol. Thank You

[DebbieB]

Bonzo, glad you took the plunge too. Sorry you've been struggling so much. I feel your pain, my energy level is seriously low...quite frankly, debilitating.

I have never heard of Methodone for pain, but just googled. I must have been out of the loop on this one, I see it's used for chronic pain and compared to morphine in some instances.

I use Cymbalta for body pain (also an antidepressent), but I doubt that it would be comparable to what you are using.

Hang in...this place is great for support and information!

[football-mom]

Bonzo, pot won't necessarily make you stoned. People with ms react differently to mj, some don't even get the slightest buzz from it, our lesions just make us different. I don't, not unless I use a very strong edible.

There are also strains of mj, CBD strains, that are mostly medicine and little THC, the molecule that causes the high. Since you seem to be in an mmj state, it should be easy for you to talk to the folks at the dispensaries to get an idea of which strains might help. It will take some experimenting if you decide to try that route though.

[KatieAgain]

Get on the medications forum and read up on Tecfidera and Tysabri. Get yourself informed before your doctors visit. Lots of good info in the meds forum.

My concern again is the number of flares you have had with a recent diagnosis and you are already falling.

The MMJ...I have never smoked the stuff...it is illegal here, but if it does become legal, I am lighting up. As a Mommy I would have to say though only do it once the kids are asleep. Even my kids, who are grown, if they were here would not know that I was smoking Pot.

You have to do what's right for you.

[wendyp6891]

tysabri

Hi Gonzo,
Tysabri was the best meds I had been on until in lost my insurance. I had been on rebif for over a year but it wasn't working for me. Tysabri was so easy to get and the whole time I was on it I did not have any real episodes. I know about the side effects but all MS drugs have one or another. Tysabri is just once a month rather the multiple times a month.

I did the same thing, by venting on here. It was the first time I has posted anything here. I didn't know what else to do. I was so frustrated.
Its great that we have a place we can talk to other bpeople who understand.

[bonzo1968]

Yes I'm also thinking smoking may be the way to go because I have a feeling Methadone after awhile will stop working. I am going to spend all day tomorrow really studying if what meds is next.

Katie you have me a little nervous now. I'm really hoping this is still RRMS. I can't have one of those other progressive forms. Im too damn young. I need to be on this Earth for my kids until they arw old enough to be ok.

[KatieAgain]

No..I think it is RRMS, but you have to get a handle on these back to back flares. If you have had as many flares as you are saying...that is really rough. And ON is nothing to sneeze at. I just went through what you are going through (with bilateral ON) and with each flare brings the possibility of more damage. That is why you need to get educated on the different meds so that you can make an informed decision with your doctor on Friday.

Meds are a very personal decision. You might even decide meds are not right for you. But you really need to lurk, read and ask questions. Some very knowledgable people there...there are seasoned experts on all the meds. Look at all your options and pick the one best for you with the guidance from your Neuro.

[bonzo1968]

Ok sounds like a plan because I really don't have one I just go with whatever I'm told by the Neuro. Yes since May I have had 3 confirmed with new lesions. Now this past episode with my right foot/leg I am assuming it it also but I really didn't feel like getting a 4th Mri done because really whats the point and it costs me around $1200 a pop because if no insurance. Thanks for the replies beleive it or not I think its helping a bit just to talk to stangers who actually know what my issues are.