Strategic pre-DX advice about insurance, etc

[Happyfeet]

For a couple of months my wife has had fatigue, numbness that changes location but is always present (shins, hands, face, arms), and a light twitching in her torso mainly when she is in bed. Prior to that she has had fatigue for a long time and some thyroid issues. We researched online and learned these symptoms could be so many different things, including vitamin deficiency, so we tried not to assume the worst. But today her bloodwork came back normal and her GP has referred us to a neurologist. It's hard not to think of MS as a culprit at this point.

I've read here that MS is very expensive to treat. I already cannot afford to insure her through my work insurance ($1,200/m), so we pay for a less expensive private PPO coverage for her with a very high deductible and other drawbacks. We are already struggling financially due to this situation, since every doctor visit or blood test is full price until the deductible is met.

What advice do those of you who have been there, done that?

Reading through these forums, I saw advice to get life insurance before a dx. Anything else?

I was already considering changing jobs just to get better insurance. Is it not true that work insurance will automatically insure a spouse for the going rate regardless of pre-existing conditions? I know private insurance won't.

I would appreciate any advice here. I'm sure it will benefit many others in our situation. Thanks!

[lyndacarol]

For a couple of months my wife has had fatigue, numbness that changes location but is always present (shins, hands, face, arms), and a light twitching in her torso mainly when she is in bed. Prior to that she has had fatigue for a long time and some thyroid issues. We researched online and learned these symptoms could be so many different things, including vitamin deficiency, so we tried not to assume the worst. But today her bloodwork came back normal and her GP has referred us to a neurologist. It's hard not to think of MS as a culprit at this point.

I've read here that MS is very expensive to treat. I already cannot afford to insure her through my work insurance ($1,200/m), so we pay for a less expensive private PPO coverage for her with a very high deductible and other drawbacks. We are already struggling financially due to this situation, since every doctor visit or blood test is full price until the deductible is met.

What advice do those of you who have been there, done that?

Reading through these forums, I saw advice to get life insurance before a dx. Anything else?

I was already considering changing jobs just to get better insurance. Is it not true that work insurance will automatically insure a spouse for the going rate regardless of pre-existing conditions? I know private insurance won't.

I would appreciate any advice here. I'm sure it will benefit many others in our situation. Thanks!

Welcome to ThisIsMS, Happyfeet. You are correct that her symptoms "could be so many different things."

If there were an effective treatment for MS, I would advocate doing anything to pay for it. BUT the cause of MS is unknown and until the cause is discovered, no "fix" can be developed, in my opinion.

I have used 3 disease modifying drugs (Betaseron, Avonex, Copaxone) for extended periods, but I think they did NOTHING for me. Although I have had insurance to cover them, I have chosen NOT to take any of these for many years. I think diet is a more effective treatment. (Read through the Diet forum here at ThisIsMS.)

I understand your concern and desire to do the very best for your wife, but I don't know that changing jobs just for better insurance is the best course for you – you must consider the nature of the job and if you would enjoy it. All the best to you both.

[mmpetunia]

if you are ready to switch jobs and think you could do better insurance-wise then i say go for it. i definitely think you could do better than $1200 a month for health insurance. that's bananas! but like lynda said just be sure that the working conditions will also meet your needs. if you wife does have MS then the insurance situation will get trickier and leaving a job with poor conditions but good insurance will be hard.

like lynda said, the MS meds have very questionable efficacy and i would read as much as possible on them now to decide if they are even something you and her would want if she were to be dx'd. if not, then it really takes the urgency out of being diagnosed, as this is one of the only benefits-- aside from the disease-modifying drugs and some peace of mind knowing what the hell is going on i see absolutely no benefit to being diagnosed. in fact, its quite a huge burden to carry around. this board has a wealth of information regarding drug efficacy. people are constantly linking peer reviewed articles here, so take some time and read through the boards. its a good starting point.

as far as getting covered under a new plan... i was flat-out denied by private plans once they knew i had MS. i called a few of them and then realized there was no way the private plans were going to cover me. the group plans through work are all that i can get covered under and all of them have pre-existing clauses that limit my coverage for a certain amount of time. each plan is different and some of them will waive the pre-existing clause if you have had continuous coverage for at least 18 months. and others have no pre-existing condition clause at all. i have blue cross/ blue shield now and that is how i am covered. the group plan is definitely the only option after a MS diagnosis, at least that has been my experience.

i guess what i'm saying is being diagnosed doesn't really get you access to much. it will however, limit access to a lot of things. if you want to take out a life insurance policy or anything else that is dependent on you or your wife's health i would definitely do it now. if you want to change jobs and get your finances straightened out then take up the diagnosis route that wouldn't be a bad idea. i read somewhere once that it takes people an average of 7 years to be dx'd with MS.

wishing you both the best during this process.

[Happyfeet]

Thank you all for your kind responses. I hadn't realize that in many cases meds don't help MS much at all. I feel some relief oddly enough.

We dug around the symptoms some more and are suspecting that she may be suffering from side effects from a medication she takes, which we are carefully tapering off. We are going to do this before jumping into MRIs and such because it might be that simple.

[Happyfeet]

Just an update here in case someone reads this. My wife was given an MRI two weeks ago which came out clean, so at this point it appears she has a virus attacking her central nervous system. The symptoms are just like MS and just as debilitating, at least initially.

We don't know exactly what virus it is but we're going to check back with the neurologist in six months.

[lyndacarol]

Just an update here in case someone reads this. My wife was given an MRI two weeks ago which came out clean, so at this point it appears she has a virus attacking her central nervous system. The symptoms are just like MS and just as debilitating, at least initially.

We don't know exactly what virus it is but we're going to check back with the neurologist in six months.

If your wife's symptoms persist, it might be time to return to working with her GP. The problem may not lie in the area of neurology at all. Perhaps he would investigate and rule out Celiac Disease/gluten intolerance? This is one problem considered in the neuro exam guidelines suggested by the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest


Especially in this section on blood tests – were these the blood tests her GP originally ordered?:


Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels (Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease (Bartman, among other TIMS members, urge this testing.)
HIV/AIDS
Hepatitis C and B

The actress Jennifer Esposito has been diagnosed with celiac disease and shares her experience everywhere.

TV interview (Taste makers): http://jennifersway.org/taste-makers-part-1-of-2/

In the following 7 min. video, Jennifer Esposito and her physician are interviewed; he states that many of his patients present with "neurological" symptoms:

Fox News interview w/Carol Alt (w/ Patrick M. Fratellone, M.D.):
her symptoms: sinus infection, losing hair and eyelashes, panic attacks, neurological, joint pain, anemia; other possibilities: headaches, blurry vision

Stay the course; all the best to you.