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1453990 tn?1329235026

Dr. is allowing me to choose

The 2nd MRI had 4 more lesions than MRI#1.  The MRI#1 used a 5mm Slice Size and the MRI#2 used a 3mm Slice size.  The Doc said the lesions may have been there before, but just got missed or they could be new.  He said my LP was negative for OCBs, but I could be in the 10%.  Current Diagnosis: Possible MS

He said I have two well documented clinical attacks that were about 4 months apart.  The first was the Optic Neuritis were is had vision problems in my right eye.  I still have some vision issues in that eye.  That was treated with IV Solumedrol and they did MRI#1.  They also did a VEP and found increased latency in the right optic nerve. The second attack was in August when lightning shot through the right side of my face - Trigeminal Neuralgia.  I've also had some old symptoms that have been around for years.  Pain and burning in my in my left arm that I thought was from some surgery 20 years ago.  An EMG said there was nothing wrong with the arm.  Then there was some burning and cramping in my feet and legs.  Some balance issues too.  I was never the most graceful person to start with, but now I fall up stairs on a pretty regular basis.  

So a couple of weeks ago I had MRI#2. Smaller slices (3mm) and a good look at the optic nerve.  The Right Optic Nerve and Right Optic Tract show evidence of damage.  Four lesions that were not on MRI#1.  Nothing enhancing on either of the studies.  

So here is the hard part.  Watch and wait for 6 more months and have MRI#3 to see if something is going on, or start DMDs and possibly prevent new lesions from appearing and never know.  I decided on the third option.  I would go home and discuss it with my partner and call the doctor back.  There was no need for me to make this decision on my own or feel rushed.

Got home and we talked.  "What happens if I get ON in the right eye again?" "Worse, what if I get ON in the Left Eye and now have left and right neurovision issues?" "Will I be able to work with hose kind of vision changes?"  "Will I be able to drive?" "What about our small ranch?" "What happens if their are cognitive changes?"  I get paid for how my brain works.  Can we afford to loose my income?  

So we were talking through this. My partner hates needles....like syncope on sight.  They don't really bother me.  I have been vaccinated against stuff most civilians don't even want to know about.  I explained that it would most likely be a shot everyday.  Partner shudders.  So the question really comes down to Risk vs. Benefit vs. Cost.  

With my drug plan, Copaxone is $1.50 a day.  The Docs say Copaxone reduces the risk of a relapse by 30% year on year.  My research says that if you stay on it, you have a pretty good chance of limiting your disability score at 10 years.  I only have one good optic nerve/tract  left. No more redundancy in the vision system.  We have too much to do around the ranch.  I need to prevent ending up with mobility issues.  Yes, we even talked about us both dropping about 50 lbs, just in case I end up in a chair.

We decided that at that low a cost and the potential for ??? to go wrong, it would be best for me to go on a DMD.  I've called the Neurology clinic to let them know.  The risk just seems to out-weigh the cost of the DMD insurance.  The Doc says "possible MS."    He may have to change that to "Probable MS" to make the insurance company pay for Copaxone.  

That is how my partner and I decided.  Any comments?

Bob
17 Responses
739070 tn?1338607002
Sorry that it seems you MAY have a worsening situation but I agree with you , especially regarding the OPN and cognitive decline. Cog fog is what caused me to go on disability because I too, was paid for how my brain works.

I was on Copaxone until recently and will switch to something else after the next neuro appt. due to a change in clinical exam but a stable, unchanged MRI.

I believe it is worth the cost of the drug to ward off any further complications.

My 2 cents,
Ren
572651 tn?1531002957
Bob,
Welcome over on our side of the mountain, even if it is just "possible" or "probable."

The FDA has approved the interferons and glatrimar actetate for use in CIS for a very good reason - we know that even with hints of Ms in the background, it is best to be proactive and begin treatment as soon as possible.

The long term studies for these DMD's are excellent - the results in delaying or even stopping the progression of MS in the majority of people are outstanding.  I am always sorry for those people that it doesn't work for, but the truth is it does work for almost all of us.

As for the cost - check out the Shared solutions patient plan - I finally worked it out with them andthey are paying my $50/month copay.  It is worth the effort to get that done.

Congratulations on making a decision through analysis and discussion.  As for the needle thing, you will be able to do all of your own injections with the autoinjector.  No needles are ever visible if your partner ever wants to give you a jab or two.

be well, be proactive....
Lulu
1140169 tn?1370188676
Good for you. You and your partner have thought this through and I think you made the right decision.

I'm a DMD user (Rebif), and a believer in doing all you can to combat this disease. Like Lu says "be proactive".

Mike
293157 tn?1285877039
I know it's not an easy decision to make and glad you made a choice to help with keeping symptoms down.  

Let us know how things go and take care
wobbly
1466984 tn?1310564208
Hi COBOB,

Well I'm the one that posted earlier who is possible MS and now doc wants to do MRA to look for subclavean steal syndrome.

You have given me lots of good advice since I started coming to this site last month and I thank you for that!

When I was originally dx my advice from my doc was to start meds.  I had many thoughts such as you do. Risk/reward -  It's a difficult decision when you fall in a gray area.

My 2nd neuro doesn't seem to feel the risk of NOT being on DMD is as big as the first one made it out to be.  He feels that if this is MS, I am probably in the early stages, symptoms are mild, and if I do have another exacerbation, he could knock it out with steroids and then we'd treat.  

I asked him if he could guarantee that another attack would be mild and would not leave long term damage - and of course he said "no."

SO I am staying on meds until I get info that there is something else that is causing all this.  I'm doing it for myself, and also for my family.

My new neuro mentioned the oral meds, but I'm not going to risk the unknowns with their long term side effects.  I think more research is needed to prove  long term safety.

Seems like you have given this some very thoughtful consideration and it makes sense.
Good luck.  BTW - I NEVER give myself shots in front of my husband - he has never said anything, but I have the feeling it would be hard for him to watch.  I was SO against the shots initially - "no way" I told my PA.  It's a piece of cake now.

Hope your decision brings you some peace of mind.
338416 tn?1420049302
My husband has a hard time watching me do the shots, but for him it's more about the pain than anything else.  

I found that while there are negatives to Betaseron, the advantages really outweighed the disadvantages.  I don't get a baseball-sized welt with Copaxone, or a lump afterwards.  I don't get lipoatrophy.  Most importantly, the IPIR doesn't happen with Betaseron.  I started having more of an allergic reaction to it, and so had to stop.  Even before that, the IPIR made me not want to take my Copaxone injections.  Betaseron is also every other day, instead of every day.

Granted, my immune resistance is lowered, and that's a problem.  I got a flu shot while I was in the hospital, so at least my vaccination is current.
1394601 tn?1328035908
You know I stand behind you!!!!  The DMD can prevent more damage.  It's the smart thing to do!!!  At least your doctor has given you a choice.  Many do not. They leave the patient in limboland with their bodies becoming weaker and weaker.  I think your doctor is a keeper!!!
1253197 tn?1331212710
Hi Bob

I think it sounds like you have made a definite step forward and going on DMD's is probably the right choice for you as you have discussed it with your partner and reached a rational conclusion.  I think for most people they just have to have faith in the treatment and pray that long term it does reduce relapses and improve overall quality of life.

Keep us posted and well done for making a decision. I hate needles but over the last 6 months have got used to them...just because they are a necessity and regular blood tests and MRi's are part of the drug trial so I am sure that your partner will get used to the needles and at the end of the day it is you who has to go thruogh the pain so I'm sure it'll all work out.

Cheers for now

Sarah
338416 tn?1420049302
Hah....  meant to say that "I don't get a baseball-sized welt with Betaseron, or a lump afterwards."
Avatar universal
You are a smart man, and your decision will be your best thought out decision that you will make.

Good luck to you and I'm glad you are able to start on a med that will help you and not wait for the unthinkable to happen.

Pamela
1225331 tn?1333369369
Hi Bob,

To me, it sounds like you have definitely made the right choice.  I'm so glad that your neuro offered you the DMDs.  So, many are not given that opportunity on here.  Copaxone is the best DMD for me - I don't want to have the flu-like symptoms, especially since I'm expected to work full-time.  

When I had to choose, I went through the same process as you - weighing my options. I kept thinking - what if I get one more lesion, and that lesion causes significant issues.  I wanted to protect myself as much as possible.  That basically made up my mind.  Plus, I only have a co-pay of $40 for a 3 month supply thru Cigna tel-Drug. And I just signed up for Shared Commitment with Shared Solutions, so they'll actually be covering my co-pay.  

My partner is one of those ones that hates needles. In fact, she has been known on several occasions to pass out after a shot.  Now she helps me do the injections. If you have the auto-injector, once it's loaded, you don't even really see the needle.

Thanks for keeping us in the loop, and of course we're all here for you thru this journey.
Kelly
429700 tn?1308011423
Good decision, Bob.  I like Copaxone.  I take the shot with my other medicines, and it is very routine.  Because Copaxone takes on average 6-9 months for it to take effect, your MRI will probably show evidence of MS lesions if it's done in another 6 months anyway.  

For me, I noticed a winding down of new symptoms after 9 months.  Also, the pain in my feet disappeared.  I know, the DMD aren't supposed to get rid of symptoms, but I don't have any other explainations for pain in my feet and difficulty walking for YEARS disappearing in 9 months after starting Copaxone.  I had the doctor's order for a wheelchair written a few months after my diagnosis because I could not walk around without pain or stability.  I was also using a shower chair.  

My neuro says that the Copaxone was allowing my brain to heal, and so this has allowed the pain in my feet to disappear.  I don't care about how the DMD is supposed to work, all I know is that I've experienced a drastric improvement 9 months later.  I have had attacks since that time (even optic neuritis, TN, etc.), but it is nothing like the runaway train that was going on prior.

Deb
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