Thoughts?

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Thoughts?

Postby taintedstar » Tue Jan 08, 2013 12:45 pm

Hi there. I'm new to this board (and to M.S.) and wanted some feedback on a problem I'm currently facing.

I was diagnosed with M.S. in September 2012 after a year of symptoms that were chalked up to anxiety disorder. After the MRIs confirmed the diagnosis and after a three-day hospitalization for an exacerbation, I was put on Copaxone. Because life is oh-so-amusing, I lost my job and health insurance right around the time I was diagnosed. I won't be insured until I get married in the spring (or find a job with benefits in the meantime) so for now, I am unable to be on the Copaxone due to the expense. I've submitted the paperwork to the pharm company to get the Copaxone for free but until that comes through, I'm not on it.

I am currently in the midst of an exacerbation that started over the holidays. My neurologist's on-call doctor told me to go to the ER for a direct admit for a course of IV steroids. Got it. The problem is (and I've told my neuro this a few times) that I can't afford it right now. I know that, ideally, that is the way to treat this but for now it just isn't an option, expense-wise and because I'm getting ready to start a temporary assignment in a few days and my fiance, kids, and I need the money desperately. My question is this: have any of you been treated for an exacerbation on an outpatient basis? At one time, it was mentioned that oral Solu-Medrol was an option but my neuro has now taken this off the table and is refusing to listen or meet me halfway on a treatment plan. The exact quote was: "Unless you agree to be hospitalized for this, I'm not going to treat you." So I'm left frustrated and feeling like crap.

Any thoughts? Is my neuro being exceptionally inconsiderate and should I try to keep fighting this? Am I in the wrong here? I feel like I need some new perspectives.
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Re: Thoughts?

Postby jimmylegs » Tue Jan 08, 2013 1:30 pm

given that coverage and status quo treatment is not necessarily on the table at present, if you can provide a list of symptoms that were chalked up to anxiety and what you're currently experiencing in this current exacerbation i can tell you which of the usual nutrients might be useful to look at while you lack coverage.

testing for nutrient status is a best case scenario, both to get baseline data and then to assess the efficacy of any nutritional regimen.

second best (costs less but you're flying a bit blind) is assessing status quo food intakes to look for risky gaps or conflicts that could lead to nutrient depletion. that means keeping an accurate food and fluids diary for several days. then food intake revisions to balance intakes if and as needed. then therapeutic (ie high) level of supplements to address any chronic imbalances that might not respond appropriately to a short term dietary change.

could provide you with some control over the short term while you await coverage. i'm around to answer questions if you need.
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Re: Thoughts?

Postby lyndacarol » Tue Jan 08, 2013 7:05 pm

taintedstar wrote:... some feedback on a problem I'm currently facing...

I am currently in the midst of an exacerbation that started over the holidays. My neurologist's on-call doctor told me to go to the ER for a direct admit for a course of IV steroids. Got it. The problem is (and I've told my neuro this a few times) that I can't afford it right now. I know that, ideally, that is the way to treat this but for now it just isn't an option, expense-wise...


Here is my "feedback," as you sought:

I have used Betaseron, Avonex, and Copaxone for extended periods. I have good insurance that covered them; however, I do not feel they were at all effective and have chosen to discontinue all those disease-modifying drugs. When scientists discover the definite cause of MS and an effective treatment is found, I will be glad to use it. If a lack of insurance prevents you from using Copaxone, I do not think it will make you worse off.

Since I believe that excess insulin initiates and worsens MS symptoms AND since glucocorticosteroids (one of which is Solu-Medrol) increase both glucose and insulin in the bloodstream, I suspect that, in the long run, steroids may worsen MS symptoms. (Could an increased consumption of sweets and carbohydrates over the holidays have brought on your current exacerbation?) It has been observed that prolonged or intense use of steroids increases the risk of type II diabetes; type II diabetes is marked by an increase in insulin levels. I believe type II diabetes and MS are connected through elevated insulin levels. Investigate the Diet forum at this website; many people have seen improvements with the change in diet.

Personally, I would not choose to take any steroids. If you wish to try steroids, I do know that IV steroids can be administered by a home healthcare nurse; oral steroids (pills) are available and frequently prescribed. In the end, you can only do what your neurologist will allow, unless you change doctors. All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Thoughts?

Postby NHE » Wed Jan 09, 2013 1:02 am

taintedstar wrote:My question is this: have any of you been treated for an exacerbation on an outpatient basis? At one time, it was mentioned that oral Solu-Medrol was an option but my neuro has now taken this off the table and is refusing to listen or meet me halfway on a treatment plan. The exact quote was: "Unless you agree to be hospitalized for this, I'm not going to treat you." So I'm left frustrated and feeling like crap.


When I had IV steroids it was done on an outpatient basis at an infusion center.

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Re: Thoughts?

Postby chrishasms » Wed Jan 09, 2013 1:11 pm

They can not refuse you treatment anymore. I'm almost positive if you go into the er they must help. To pay for it file for bankruptcy on them if they won't be nice.
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Re: Thoughts?

Postby Cece » Wed Jan 09, 2013 1:59 pm

http://link.springer.com/article/10.100 ... 72?LI=true
We found that corticosteroids or ACTH produced a significant improvement in disability or visual acuity at 30 days (odds ratio 0.49; 95 % CI 0.37–0.64). The improvement was not statistically significant at longer follow-up (0.85; 95 % CI 0.67–1.09).

My understanding is that steroids help with short-term recovery and can end the relapse faster but that it's best to start within a few days of the onset of the relapse. You are past that if you've been dealing with the relapse since the holidays. The research quoted says that there's no significant difference in disability or visual acuity at longer follow-up whether you take the steroids or not. So if not taking steroids won't hurt you long-term (other than taking longer to get through this relapse) and taking them hurts you financially, I would fully support the decision to not take them.

Good luck, so sorry that all this happens to you especially when you are in a gap between insurances.
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