SPMS - What do I do?

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SPMS - What do I do?

Postby jenn » Mon Jul 13, 2009 11:11 am

I am a 32 year old, female diagnosed 5 days ago w/ Secondary Progressive Multiple Sclerosis.
Dr gave me 4 meds to choose from & told me to talk to my insurance & decide which I would prefer - Avonex, Betaseron, Rebif or Copaxone.
Coincidentally, in checking w Aetna, these are the only 4 MS meds my plan covers. I had decided to go with Copaxone because the minimal side effects.
BUT, this morning I found that none of these 4 meds are FDA appoved for SPMS. So why should I bother taking them? The only med FDA approved for SPMS is not covered by my ins plan. So now what? Did my Dr prescribe the meds to humor me?

Here are my symptoms
1. I have numbness with minimal loss of motor function on my left side from shoulder to lower torso including my arm & hand that has been present for over 3 months & my neuro says is permanent.
2. My brain MRI shows multiple lesions (more than 10).
3. I have L'Hermitte's sign.
4. 5 years ago I sufferred from partial loss of motor function (couldn't write or speak correctly) but recovered in a few weeks. I didn't know at the time that this was a MS exacerbation as it was misdiagnosed as anxiety disorder even after a CT scan.

With my symptoms does anyone know of real life cases where Copaxone worked/helped with SPMS?
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Postby robbie » Mon Jul 13, 2009 1:19 pm

Hi jen don’t worry to much about the drugs they most likely won’t do shit anyway, for now just live, live, live keep doing things you’ve always wanted too. good luck there will be lots of folks that have it figured out to help you here. If it helps at all we all know what you’re going through.rob
Had ms for over 19 years now.
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Postby peekaboo » Mon Jul 13, 2009 2:03 pm

Hi Jenn -

Diagnosing the different types of MS is hard to do even for the professionals. There are many of us here at TIMS that don't think much about the CRAB's meds, at most they do is some symptom relief. There is a forum for each of these meds where you can read the results and thoughts of others. I highly suggest you do so.

Robbie speaks some truth about live live live your life now. You should introduce yourself to Mrhodes40. Her name is Marie and is taking copaxone as well. She is dx w/SPMS too. She and & and others are also pursuing CCSVI. Chronic Cerbralspinal Venous Insufficeincy. You may want to puruse the post there.

Anyway. welcome to TIMS
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Re: SPMS - What do I do?

Postby NHE » Tue Jul 14, 2009 1:52 am

Hi Jenn,
Welcome to ThisIsMS. I believe that you will find a supportive community here. I don't know why your doctor would recommend the CRAB medications to you. They are particularly expensive and haven't been approved for SPMS and all of them can have bad side effects (including Copaxone, just do some searching around here about lipoatrophy).

However, there are things you can do beyond the CRABs. Have a look around the Natural Approach forum. There are many folks that have had benefits from changes to diet to eliminate proinflammatory foods and through added supplements, e.g., omega-3 fish oil and anti-inflammatory antioxidants such as r-lipoic acid, EGCG from green tea, and curcumin from turmeric, and also vitamin D3, calcium, magnesium, and zinc.

Lastly, feel free to ask questions. We will usually try to help you or at least get you going in the right direction towards an answer for your questions.

NHE
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Re: SPMS - What do I do?

Postby NHE » Tue Jul 14, 2009 2:05 am

Peekaboo wrote:There are many of us here at TIMS that don't think much about the CRAB's meds, at most they do is some symptom relief.


I'm not sure that I would agree with that. They do slow progression somewhat just not by a great deal. In addition, Avonex has also been shown to reduce brain atrophy. However, they are certainly of limited benefit. Though better than what MS patients received in the not too distant past (referring to mercury and silver salts).

Jenn, be sure to check out Dignan's pipeline threads for useful ideas on treating SPMS.

Summary of the pipeline and Progressive MS Pipeline

NHE
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Postby patientx » Tue Jul 14, 2009 7:05 am

Jenn:

Most others here have much more experience and knowledge with MS. But what I've read, sometimes neurologists will prescribe one of the CRABs in the chance that it might do something. Despite the side effects it might be worth a shot given this chance.

Also, diagnosing the different stages is not always cut-and-dried. In fact, I'm surprised he would diagnose you with SPMS right out of the gate like that. Usually they don't make that determination until after some time period, usually years, of observing progression.
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Postby LR1234 » Tue Jul 14, 2009 7:10 am

I am also suprised that you have been diagnosed with SPMS.
Why has he diagnosed you with that and not relapsing remitting MS?

Is it because all the disablities you have accrued have not got slightly better at all? or is it because your symptoms have recently just got progessively worse without you noticing them getting worse?
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Postby robbie » Tue Jul 14, 2009 7:29 am

sometimes neurologists will prescribe one of the CRABs in the chance that it might do something.

thats all it is, the magic word HOPE.
Had ms for over 19 years now.
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Postby Loriyas » Tue Jul 14, 2009 11:00 am

Jenn
I suggest that you learn as much as you can about MS and about the different types. Then go back to your neurologist and ask him why he is suggesting Copaxone. He may have thoughts on it that you won't know unless you ask! You can then make a more informed decision. I am a big believer in taking charge of your own health. I think the more you understand the better decisions you can make.
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Postby RedSonja » Thu Jul 16, 2009 4:29 am

Everyone's MS is different. Cop works for me, but it won't work for everyone, so you won't know until you try it. And if Cop doesn't work for you then you can try one of the others.

They all have side-effects, but I prefer my bumps to the crutches my sister uses. This is one of those choices you have to make on your own.

The drugs have been shown to slow the disease for some people. The world is full of charlatans trying to sell you all kinds of snake-oil for MS. They don't work.

Changing your diet may well help you feel better, but you have to try it out yourself, because everyone's MS is different...
Bibo ergo sum
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