Monday, December 06, 2010 jaxandannie asks

Q: Pre-diagnosis, seeking thoughts, questions & feedback from a concerned couple with limited options.

Hello everyone. My name is Jacob. My beautiful wife Annie is sick and we are yet without diagnosis. We are sure now that what she is suffering is impacting her neurologically.

Though she has had some ups and downs in the last 2 years with fatigue, depression, and other mood disorders about 6 months ago she developed extreme fatigue (some days she can barely stay awake for more than a few hours at a time, her leg reflexes are high/hyper, her feet have muscles that never stop moving (looks like snakes slithering underneath her skin 24/7) and this accompanied by extreme pain her feet, ankles, calves, and sometimes her knees, shoulders and elbows. Her ears also ring. Her muscular weakness in her legs and feet is pronounced and her feet and toe nails can bruise and swell so easily now with even minor activities.

Nothing is stopping the pain which is baffling and so painful for me to watch her suffer. Her spasticity in her feet (I think that what it is) is getting worse no matter what medicatins shes has taking so far.

We are both uninsured as both lost our jobs in June of 09' which is making any medical progress painfully slow simply because we can not afford the testing that she needs. I now have to be here with her almost all the time just to make sure that she is cared for in the midst of us doing all we can to run the business that we started out of our home while I attend school full time from home while raising our 4 sons together. It has been overwhelming with her most recent and severe downturn since this began almost 2 years ago.

In the last few weeks we are increasingly convinced that this all pointing to MS. I am sharing all of this simply to ask if any of this sounds familiar to you who have been diagnosed and if you have suggestions for people like us in our situation and are uninsured?

Also, if you could go back to before your diagnosis would you do anything different in preparation, insurances, planning etc.? Thank you for any feedback you can provide for us.

Concerned and undiagnosed,

Jacob and Annie

- A
- A
- A

Answers (1)

Lisa Emrich, Health Guide

12/ 7/10 8:56pm

Hi Jacob and Annie,

I am very sorry to hear what all is going on with your family, both financially and health-wise. It's not easy to handle, I'm sure.

It does sound like consulting with a neurologist would be a very good idea. There is help available (for people who qualify) to get a MRI for diagnosis. When it comes time, contact the MRI Diagnostic Fund sponsored by the Multiple Sclerosis Association of America.

As you know, spasticity is commonly associated with MS. However, it can also be associated with other diseases. I have a friend who was mis-diagnosed with MS for years before a new doctor correctly diagnosed her with a much more rare disease - Stiff Person Sydrome. One of her primary symptoms and complaints was extreme spasticity and related pain. Not to give you something else to worry about, but to actually let you know that there are other possibilities besides MS.

The type of medications which help MS-related spasticity (and its pain) are not available over the counter. Unfortunately, NSAIDS do not typically help. Prescription medications do help.

Very wise to think ahead before making any serious moves on getting an MS diagnosis just yet. One thing I wish I had now was long-term insurance and disability insurance. I was self-employed before diagnosis and didn't have these through work. I just had never thought to buy insurance for myself in my 30's.

If at all possible, get health insurance. It is much harder to find insurance once MS is mentioned in your medical records. Depending upon where you live, your options will vary.

Please know that we are here to answer questions and offer support.

-----

Here's a thought related to the possible spasticity. Is your wife heat-sensitive? Does heat make her legs weaky or jelly-like? If so, a hot bath might help the spasticity but it could make other symptoms worse, depending. Worth a try.

jaxandannie

12/ 8/10 11:43am

Lisa, you mentioned "long-term insurance" but what kind of long-term insurance are you referring to? Long-term care insurance? Thank you for very much for your very helpful reply.

Lisa Emrich, Health Guide

12/ 8/10 10:45pm

Sorry, I was thinking long-term care insurance but left out the "care." It may not be needed but could certainly be a life-saver if it is needed someday.

It may be very wise to meet with a financial planner/consultant to get specific advice on what kind and how much insurance would be wise to have at this point in your situations.

Q: Pre-diagnosis, seeking thoughts, questions & feedback from a concerned couple with limited options.

Related Questions

Ask a Question