New at this...and the disease....

[metalbender]

I am so frustrated that I have to turn to a forum to help me get some answers....At the end of March of this year I woke up with blurred vision....I had pain in my left eye...I thought it would clear up and I did nothing...About a week later it was not any better but maybe slightly worse...I was at work and I closed my good eye only to be shocked that my left eye wasn't working at all...I called my doctor's nurse and she made an emergency appointment for the optometrist...He ran several tests that I wasn't familar with...His diagnosis was optic neuritis and told me that he would schedule an mri to determine more...About a week later I had an mri....The next morning after the mri, I received a phone call at work from my doctor...He told me I had 5 brain lesions and the optic nerve was extremely swollen....He said a neurologist and another doctor is waiting for me at the hospital to start steroid treatments(5 days) and to run other tests....I said WHAT?.....He asked me if I heard of ms and they need to expedite on this quickly....I get to the hospital and before they do the steroids they want to eliminate other possibilities....Besides all the blood work they also gave me a spinal tap...The spinal tap came back as positive evidence....Since my doctor is new (last summer was the first appointment with him) and he doesn't know my medical history, they don't know exactly where I'm at....I am going to be 44 in a couple weeks....Besides last year, the last time I saw a doctor before that was when I was 14 and still used a pediatrician...

Besides walking like a drunk Irishman, my vision hasn't improved and that was 11 weeks ago....I have a difficult time with speech as well....I have had symptoms for years and did nothing....I always used probability as an excuse not to go....

I am still working but somewhat limited....The guys at the shop really are really great....Sometimes a little overbearing but awesome...Working 8 hours is very difficult but I manage because of the drugs....Sometimes I leave early because I get very tired....

I had 3 questions for the doctors and they answered only one:

Where am I at with the disease?......Don't know

Where am I going?....Don't know

What do I need to do?.....Take your prescriptions, good diet, and SLOW DOWN....

Sorry for the novel but I need to vent....Oh yeah, one other thing:  I have picked up the avonex, but can't shoot myself with a needle so I'm procrastating on that....I live by myself and have no family in Spokane to help me with these shots....So for right now I'm only using gabapentin, baclofen, and amantadine for medicines....

[cainer]

hi!!  glad you found this forum!!  its a good one!  hey ya kind-of sound like me i -never- went to the dr!!  but that has changed!  what everyone said though you need to get on something- it might keep things at bay!!   hugs!! cainer

[essdipity]

Hi, Michael. Another welcome from here.

I just want to say that the Avonex shots are not bad at all. I've been doing them for 3 years now, and it's become quite routine. The needles are very fine, so I often don't even feel them.

You really need to do this for yourself. You could be preventing a lot of disability that way, and you don't want to be kicking yourself later on.

There's lots of support on this forum, so I hope you'll be here often. We'll do our best for you.

ess

[COBOB]

My neuro-ophthalmologist said it could take 6-9 months to see improvement in my vision.  It was faster than that, 4-6 months in my case to get  back to 20/20.  Then I got hit with ON again.

Bob

[metalbender]

So 3 months without any improvement in vision is still considered early?...I hope so, that would be good...I see my neuro in one week...You are right about the needle...I think it's all in my head...I asked about having the clinic do them for me, but they can't for liability purposes...I can't bring the medicine with me, it has to be at the clinic...

Michael

[metalbender]

I know I was playing hard to get....The doctors are always putting us on hold, so I figured if it's important, he will call back....And he did...He's very good about calling me on his cell at whatever time...He hasn't heard from me in about 6 weeks so he wants to see me...He's concerned about me because I don't like doctors...In other words, he thinks I down play everything...For example: I always blame it on getting older or I don't give him enough information...

He did tell me on the phone yesterday, that my Vit.D was low enough to increase my pain significantly...It should also help with fatigue....It's been a week but no improvement on fatigue...
No improvement on pain...

And yes I do work with metal...I have been bending metal for 19 years now...It is rewarding and you can build anything your creative mind can come up with...

Michael

[sllowe]

Ok. I'm glad the docs know. When do you go back?

You can take a little time. Not ALOT, but a little to get your head wrapped around it all before beginning injections. But, definitely pick up those neuro calls - it's important.

Look at it this way - for now, just never say never. When it comes to this disease, you just never know - your vision can improve, it can get worse again, etc. But, it's early. So you got that going for you.

I guarantee you the shots are no way comparison to getting poked by a piece of metal. Cake walk compared to what you've prob experienced in the shop for sure :)

-Shell

[Lulu54]

You are playing hard to get, Michael.  I can see skipping the avonex for a while, but shunning your neuro?  Almost eveyrone here would be hurdling over the couch to get to the phone if it was our doctor calling.  LOL

The B12 and the VitD will make a difference but that is not the whole story, as you know.

You are pretty much right about the vision - it will improve quicker with the use of the steroids, but with or without treatment it will resolve whatever point it is heading to on its own course.    I wish I could tell you differently but we try to deal honestly around here, as well.

Bad attitiude seems to come and go with this disease- that is not unusual, so don't be surprised if it comes around often.  What we have to do is work at finding ways to keep ourselves out of the funk we can easily slip into.  If you need suggestions, be sure to ask us or those pesky doctors.
-L

[metalbender]

Thank you everybody...I've been doing some reading here and there is a lot of good information...Also, people's experiences give me a little insight of what the heck is going on..And more importantly people are very supportive and caring....

To answer your question shell...I'm not using steroids now....When my doc sent me to the hospital it was 5 days of i.v. steroids...And yes both of my doctors know that my vision hasn't improved....I have already told myself: If it hasn't gotten any better by now, it probably won't come back....It's been nearly 3 months....

Also, my primary doctor wants me taking B12 shots every 2 months....I wasn't deficient but it was borderline low...He also found my vitamin D was critically low....Below 20 he is considering critical and I came in at 6...So last week I picked up another prescription and I am suppose to take 50,000 units per week...One tab a week...I started that last week and I haven't noticed any improvement....Today I got the B12 shot, so hopefully I will see an improvement...

Want to hear something funny?...My neurologist just called as I'm typing and I ignored him!...He can call me back!...I shouldn't be this way since he is trying to help but doctors can really irritate me...My attitude ***** and I need to find away to change it...

As for the avonex...They did instruct me what to do...And I don't think I being weaned onto it as what happened with Amy....I'm just a bit weirded out by having to do myself...And to tell you the truth, I don't think I can do it....

Michael

[Lulu54]

Hi, those of you who work with metal always amaze me.  some local high school students for their senior prank cut a car in half and welded it back together around the flag pole in fronjt of the school.  They didn't get in trouble because they asked the principal for permission before they did it in the middle of the night.  I thought then that I wished I had a welders torch and knew how to use it!

Anyway, I just digressed a whole bunch from  the point - shell is right that you got lucky finding us.  This place is full of knowledgeable and compassionate people who wil go out of their way to help you with answers and shoulders to lean on.

I'm so sorry you got this rapid diagnosis out of the blue - most people at least have time to warm up to the idea that there is someting very wrong.  

That said, please understand that having MS is not a death sentence and with the drugs we have available, it even means you aren't necessarily destined for life in a wheelchair.  If you start those disease modifying drugs, such as avonex, and stick with them, you have a really good chance of living a long, healthy life with minimal impairment.  

If you have trouble working through the injections, contact your doctor's office and ask if perhaps they can do it for you.  I have heard of people doing their weekly shot that way.  But I suspect that someone who bends metal can push that litle piece of metal into their skin after you've seen it done once or twice.  


It is great to hear that you have doctors who are honest---- they don't knowwhere any of us are at with this disease,  they don't know where any of us are going with this disease, but they do know that getting on a therapy and sticking with it is our best chance.  

I hope you'll stop through often and take some time to learn more about this MySterious disease.

welcome to the club no one wants to belong to,
Lulu

[drsdonthelp]

I must say, you have come to the right place! This forum is the BEST, just like shell said, very smart, informative people on here and very caring. I wish you the best of luck with everything. I am sorry I am no help to you, I just wanted to welcome you and tell you we are all here for you!!

Pam

[COBOB]

There was a large study (The Optic Neuritis Treatment Trial - ONTT) that showed IVSM may help speed healing when used to treat Optic Neuritis (ON).   Most doctors feel that IVSM is the best course when you have ON, but some doctors do not treat it at all.  

I have had two bouts of ON and a course of IVSM each time.  The IVSM will halt any active attack by the immune system (immunosuppression) and will reduce the inflammation within the brain that may be effecting the optic nerves and associated structures.  

My experience has been that it can take several months for vision improvements, and I ended up with with vertical double vision that I did not have before the ON.  It takes time.

Bob

[Ojibajo]

When I started Avonex, they had a nurse come out and train me to do the injections. I was weaned onto it 1/4 dose the first week, 1/2 dose the next, 3/4 the third week and finally a full dose. The nurses are very helpful They gave me all sorts of free helpful stuff and I can call anytime I have a question.

Call: 1-800-456-2255 and they can help you set this up.
www.MSActiveSource.com

Also the thing about in intramuscular is that once you get past the skin there are no nerve endings so there is no pain with the injection after that. I would also ask for the 1" needles rather than the 1.5" needles that they come with.

-Amy

[sllowe]

Hi there,

Well, though you had to pick a forum, you must be pretty good at picking, because this one is the BEST! lol

We are very glad to have you. And, I must say, your doctor did you right. You needed those iv steroids to save your eye. I'm sorry you've not seen anyimprovement as of yet. Have you mentioned this to the doc? What dose are you on now?

Can you call the Avonex folks? They should come out and do the 1st shot with you. Once you do this, you'll find it's not so bad. I'm on Rebif, and it's 3 x's a week. Since you don't like needles, it's prob. best you picked the once a week.

You are more than likely RRMS.  The odds are with you to definitely see some improvement. Which, when you are bad off, even the slightest is thrilling. I can totally relate to the drunk feeling. Didn't know if I'd ever stop slurring and walking sideways while still upright (hey, is that even possible, ahah).  But, I did, mostly.

Where you are going depends on your next step. So, right now, you can stick with us - find yourself a daily pace for now, and if you get lucky you'll be able to slowly see improvement and get some of your old self back. This is nothing you can force better. No sense exhausting precious energy trying. Hour to hour and day by day.

It's a lifestyle adjustment to say the least. Best immediate advice I can give is to not think too much about it your future, just find those ways to do what you do in a different manner, and speed.

Now that you are a part of us - ask anything, anytime. I'm sure others will be on their way soon to welcome you.

-Shell

[jerseyg]

I am so sorry. That is not easy news to hear even when expected it. I understand about the shot. Do u have one side that has less feeling? U can start learning there but u do have to rotate sites. I also am sorry about the answers but there are no clear cut answers to these questions. It has been nicknamed MySterious for a reason. Welcome and the folks on this site. Are a great support group
Missy
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