What should I be asking? What has worked for u??

[Chrisjarvis93]

Okay, heres my situation. It started with both my eyes going blurry at separate times, both generally got better with time, then I started stumbling, I was diagnosed about 2 months ago, I and my fiance did not like my nero and how he handled it, he pretty much came in, said I have "severe MS" and the damage is done.

He prescribed me Copaxone 20. Said it would not get better but should stop it from getting worse, I was barly using a cane then, NOW I use crutches. It has gotten worse. I went to the university of Tenn to see a specailist and there was NO parking in a BUSY environment. So I went home without seeing him =(.

TOMORROW i go back to this doctor who I dont like. I have been on copaxone for over a month, and I want to be on the stronger IV meds. So i will be requesting that. My question is.... what else should I be talking about? I have heard about pills and meds to help with each symptom, and even steroids, whats the main things I should be bringing up?? What has worked for you? I am not handling this well anymore, I am a new father who had to stop workiing and supporting his family bc of MS. I NEEEEEEEEEEED to get better.

[rdmc]

Hi Chris,

Welcome to the club, and sorry you're now part of it.

I can't speak to DMDs other than to say they take awhile to kick in. I took Betaseron for about 9 years, but there are newer meds now. I've never done steroids because I'm allergic to them.

But I'm a huge believer in symptomatic meds. I'm sure we could help you out with some suggestions to being up to your neuro, but we need to know what symptoms you're experiencing.

Why are you using crutches...are your legs weak, are they stiff? those kind of details might make it easier to let us know what has worked for us.

Hang in there.

[Myoak]

Hi Chris,

Sorry about MS; it is a tough disease.

I hope you can find a MS specialist. The disease and the 10 FDA approved treatments are too complex and nuanced for the average neuro who has his attention divided by many neurological diseases, IMO.

The first most important thing is finding a doctor who specializes in MS, so keep looking. And next time keep the appointment no matter what.

When you do find a specialist I believe you will be amazed at the difference in proficiency handling MS.

If you have a specialist right now don't be afraid to express your concerns. Same goes if your current doctor isn't a MS specialist, be sure to tell him how you feel and why you are concerned.

Don't fire who you have until you have already replaced him, you may need him.

Best to you and your household. May blessings of peace and joy be found with you in spite of these present circumstances.

Seldom as fast as we hope but I believe answers and solutions will come as you seek them. I am so pulling for you.

[Chrisjarvis93]

My major one is walking, I havent lost strength, atleast not a noticeable amount, but my balance and coordination is the worst. It also feels very hard to stand for to long. I get bad migraines. I cant read small writing anymore, it looks blurry. I have numbness always in my legs and feet. and sometimes its hard to control my bladder

[poppydarling]

I think it would help to find a doctor you like, hopefully a MS specialist. You need to have faith in what they're telling you, and the decisions you both make, because there are so many variables and nobody really knows anything for sure!

Often the doctor will pick a road and you'll start moving down it, but you need to know why you're going in that direction and what you're going to do if the plan doesn't seem to be working, and how you're going to measure the outcome.

I highly recommend visiting the MS Society website and reading through some of their articles before your visit, so you can use the jargon and let him know that you're being proactive and advocating for yourself. Best of luck and let us know how it goes.

[KatieAgain]

IMO....my opinion only, you need to discuss only one thing it would be the DMD. If the doctor has told you "severe" MS and then puts you on Copaxone, I could understand your frustration. Discuss with him other options.

I would also get someone to drive you to see the Specialist...drive you to the front door and let you out while they go look for parking. It will be well worth your time.

Good luck with your appointment tomorrow.

[Thinkimjob]

Ah yes, but my newish MS specialist looked at my ten year old MRIs and said, "You have always had severe MS."

First I'd heard of it. I thought I had been pretty good, and things had only taken an unpleasant turn for the worse in the last few years.

She wasn't looking at the MRIs from last year; these were the ones from way back when.

"It hasn't really changed that much," she said. Seventeen years!
Yeah, no, really, no change? So why the (you know, fill in the gap) can't I walk more than ten yards?

Which leads a non-neurologist like myself to think maybe, just maybe, the *#%€ happens very early on, and your dear old brain keeps rewiring and rewiring and rewiring until it just can't do it anymore.

[rdmc]

My major one is walking, I havent lost strength, atleast not a noticeable amount, but my balance and coordination is the worst. It also feels very hard to stand for to long. I get bad migraines. I cant read small writing anymore, it looks blurry. I have numbness always in my legs and feet. and sometimes its hard to control my bladder

Hey Chris,

Tell the neuro exactly what you wrote in your post. If he determines the problem with your legs is spasticity...he can prescribe an anti-spasticity med (usually it's Zanaflex or Baclofen.) Both can make you sleepy, so if those are prescribed.

If it's from ataxia (that's lack of coordination) not sure if there are meds for that but sessions with a physical therapist might help.

As to sensory problems like burning, tingling, etc. there are meds to address that. A lot of folks take Neurontin, but there are other meds.

For the bladder issues, you may need to seek out a urologist. They are the most helpful with bladder problems.

The advice to seek out an MS specialist is a good one, but sometimes they take months to get to see...so in the meantime ask your doc about the symptoms you've told us and if there are meds he can give you to relieve those symptoms.

Hope the appointment goes well.

[Cat Mom]

If the doctor has told you "severe" MS and then puts you on Copaxone, I could understand your frustration.

So true! Copaxone takes approx 6 months to kick in. It was like "text book" personally. Ask your doc if they're starting you on a "milder" drug (not sure if that's the correct term, I mean a drug with little side effects) before moving you to a newer one.

Good luck!
Jen

[palmtree]

From your post I see several concerns. The first, of course, is to find a doctor who is fully knowledgable about MS. MS specialists usually are doing research at universities. Although an appointment with one is a good idea, it's not always practical. Your parking debacle is a good example. If you are in the middle of a flare, driving across town to the MS specialist might not be practical. I live in a large metropolitan area so there are many good neuros to choose from. I hope you can find one. The important thing is that they know about all of the MS treatment options and know enough about MS to evaluate you. If you log onto MSWorld enough, you will become an MS specialist soon.

There are two major concerns I have with your doctor. One is
That, if you have a "very aggressive form of the disease", Copaxone. is too conservative IMHO. Your doctor is right in that the disease modifying treatments do not cure MS, they only hope to slow progression. But where he is not giving you a comprehensive picture, is that, it can never get better. If you have relapsing remitting MS, you may just have had a flare, which led to your dx, but you could make a full recovery.

When he tells you, "you have a very aggressive form of the disease", ask him "what leads you to draw that conclusion? Are my MRIs showing active lesions?"

It's a long journey learning about MS and where your disease fits into all of this. And, even when you think you have it figured out, it can change. We are here to help and you are going to find yourself a doctor that,not only is knowledgable about your condition, is someone you feel comfortable with and can talk too.

[tejokid]

Wow, you've really been slammed with a lot in a very short time. I don't know if any of these ideas might help, but I'll throw them out there anyway, just in case.

Because I had an excellent doctor when I was diagnosed, I didn't realize just how important that was until I moved and got to my third neuro--he sounds a lot like the one you're dealing with. You don't have to accept--and you don't deserve--that kind of treatment. You need an ally, not a critic. There are several doctor rating sites on the internet--some are better than others, but you might be able to get a feel for what others' experiences have been with neurologists where you live.

Don't hesitate to get a handicap parking permit for your vehicle. The DMV has a form for your doctor to sign so you can get a license plate and/or hang tag for your vehicle. Those designated parking spots are put there for a reason--you. And if parking is an issue so you can see a specialist at the university, take a cab so you can be dropped off at the door.

You didn't mention seeing an ophthalmologist for your vision problems--if you haven't done that, it might be a good idea. If it's MS that's affecting your vision, they can determine that and give you more information about what's going on. Information is right up there with specialized medical treatment when it comes to dealing with what's happening to your body and your life.

It's possible that the migraines are a separate issue from the MS. I've had them since I was a little kid and they're simply devastating even in the absence of MS. Fortunately there are effective treatments available now that didn't exist back in the dark ages when I was a kid. You've got enough to deal with, and I'd almost bet that the severity of migraines now has something to do with the extraordinary stress you're going through. When you're not able to fix everything that's wonky, it can still be a huge help to fix one or two things that do have a solution.

You mentioned using crutches now instead of a cane--this is probably silly of me to suggest, but when I was first diagnosed in 1988, I wouldn't have known--in case you're using sprained-ankle crutches, switch to forearm crutches--they're a lot easier and more stable. I wouldn't mention that except your doctor seems to expect you to figure everything out on your own. And be very, very careful on wet floors because it's like setting your crutch down on an oil slick.

If you are, indeed, dealing with a profound version of MS that is not likely to show dramatic improvement with medication, investigate applying for disability sooner rather than later. It's a disagreeable process and it can be really discouraging, especially if your application is denied the first go-round. That's the way the system is set up--it's meant to weed out the bogus claims, but it sure puts a hurt on people who deserve it. Social Security disability is insurance just like car insurance. If you've been paying the "premiums", you have a right to the coverage whether it's your car is wrecked or if it's you that crashed.

And finally (whew!) be proactive and look at your environment for ways to make your home safer. Get rid of every throw rug in your house-they're called that for a reason. (I can attest--a broken ankle really gets your attention.) Install grab bars in your shower or tub--one is essential, but having two of them really helps. I have one inside the shower and one on the wall just outside the shower, allowing me to grab with both hands to step into/out of a slippy surface. They'll more than pay for themselves the first time they save your cookies from a fall. If you're renting, most landlords agree to installation of grab bars as long as you leave them there next time you move.

I hope all that doesn't sound too goofy You're dealing with a lot right now and it's bound to seem overwhelming--one day, one step at a time.

[sulphur kennel]

First, fire your currant neuro!

If you don't like the neuro you are seeing you won't be communicating on the same level. MS patients and their neuros need to be a team and if you don't like your teammate it usually won't work.
Next, make another appointment with the specialist and no matter how busy the area is be determined to see him. Do whatever you have to do to keep the appointment! Continue on your Copaxone until the new nuero tells you to stop or wants you to continue. Did you go through a round of IV steroids? I would think even the most incompetent dr, would put you on that for a couple of days.
My troubles started with my eyes and the j@(%***** that was the only neuro in the area at least had enough sense to order the steroids. 1 month on Copaxone is not enough time to know whether or not it is working.

[bjrnewlife2013]

So true! Copaxone takes approx 6 months to kick in. It was like "text book" personally. Ask your doc if they're starting you on a "milder" drug (not sure if that's the correct term, I mean a drug with little side effects) before moving you to a newer one.

Good luck!
Jen

Many insurances won't pay for some of the more current mends until they have prove that the others won't work or you have reactions to them. Sad but true. I started with Rebif for 2 years. I was miserable the entire time. Then was tested to see if I could go on Tysabri--nope, not a good selections for me. Then Gelinya for a year. That didn't seem to help matters. Now I am on Tecfidera and seem to be doing well on it for the first year. Blurred & double vision are an ongoing issue. I have prizms in my lenses so I can see one of anybody. Tremors can be severe, but don't go away. Between fatigue and the meds I'm on I could sleep a lot more than I do. I still work 40 hours. I have been coughing for a month which doesn't help with bladder issues. I'm just waiting to see what the next thing will be. I don't care much for my neuro either and am requesting a referral to a real MS doc at my physical in 2 weeks. Please, Please go to a specialist. You are too young for this. I am not sure crutches are the answer. I was given crutches after surgery 2 years ago and kept tripping over them. A walker perhaps would be sturdier.

[BigA]

I'm surprised no one has mentioned it, but once (and if) you can stabilize (you usually do), there can be a good amount of healing, particularly with exercise (but do not rush it). The first year is hell. Whatever you do, don't stop taking your DMD, i.e. copaxone, etc.

What does a DMD do? If it works best, it freezes the disease or at least slows down progress for an unknown length of time. It works differently on everyone. If you are lucky enough to have a vacation from new attacks, you may recover none, some or most function back.

It also depends on whether you are relapsing or progressive. You need to educate yourself. Read all you can, go to pharma sponsored events - Copaxone has the best ones and you will learn about the other medications too.

Good Luck