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Coming out with MS to my heart sisters

Aug 16, 2008 - 0 comments

I was looking over what I have posted here and realize I did not share the post I put up on womenheart when my PCP told me she was fairly certain I have MS.  I am putting it here mainly to remind myself of where I came from and I can look back already in less than a month and see how much I have gained from this board.  If you are reading this and need another wonderful community of heart survivors, I would strongly recommend

http://www.inspire.com/groups/womenheart/

Here is my post to them:


July 30, 2008

Dear Heart Sisters,

As many of you know, I keep pursuing the correct diagnosis for my disease through medical tests. My new PCP ordered an EMG, DEXA scan and a brain MRI after we talked about the continuing neuropathy and foot drop in my right leg. I wrote here about my EMG visit with the Voodoo doctor and his pins.

The good news is my bone density is above excellent – the results show that osteoporosis is the least of my worries.

The bad news is my brain MRI shows “moderate white matter disease in keeping with a demyelinating process such as MS” to quote the radiologist. I have active brain lesions that indicate that multiple sclerosis is in my body and flaring right now. There are also blackhole formations bilaterally in my brain, “indicating severe axonal destruction.” I guess this ends my jokes about the voids in my brain. 

MS is a bizarre disease and diagnosis is difficult but my PCP is almost positive that this is what I have and has made the referral to an MS neurologist at Ohio State University’s MS Clinic. I am working on getting that appt scheduled asap of course. You all have probably figured by now I am not a patient person when it comes to my health.

Many of my symptoms that we have treated as cardiac also overlap in the MS symptoms. My aching right side (where I have that gallbladder sludge – wrote about that one too!) is almost definitely MS related. The night chest pain that keeps waking me may not be variant angina after all, but also MS. Muscle spasms are a big symptom of this insipid disease. Nitroglycerin may have helped or just masked the spasms and that’s on my list of questions for the cardio doc tomorrow when I see him. As luck would have it I already had an appt scheduled when I found out this news last week.

I am not writing this looking for pity – I’ve already done that on my own, worked through a half box of Kleenex (saving the other half for another time!), and ready to tackle this as well. Yes it stinks, but doesn’t heart disease also stink? It looks like I now have both.

I want all of you who are still searching for answers to remain open to other possibilities. Familiarize yourself with the symptoms of MS – don’t borrow trouble as my mom would say, but know that there are other diseases out there (besides GERDs which many of us have been diagnosed with) that mimic cardiac disease symptoms.

MS is very important to catch early (which mine probably is not), is treatable with drugs that delay its progression, and is not a death sentence. Many people live full, happy lives who incidentally also have MS.

For those of you who want to know more about what I’ve been through since January, go back and read the discussions I’ve posted. I will also be happy to answer any and all questions you may have, even if my answer may very well be “I don’t know.” There’s so much I don’t know and now I have to learn a whole new medical vocabulary after working to master cardio-speak.

As I close this out, I am overwhelmed knowing the support I will receive from all of you. (I kept those extra kleenex for a reason, you know!). You have played such an important role in healing my broken heart this year and I plan on keeping all of you in my life for a long time to come.

I love you all!
Laura


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