on my soapbox

[Lulu54]

Good evening,

I have a heavy heart right now, having just spent some time today and yesterday on the womenheart forum at inspire.com, my first online community that I joined earlier this year.  The newest member's face beamed off the page at me, and upon reading I find she is only 28 years old.  Last night I was answering a 20 year old college student's  questions about open heart procedures (she had a heart attack this summer) , right after dropping a private message to my dear friend Abigail, who is 26 and has had multiple cardiac attacks and now is using a walker to maneuver and has multiple other complications.

The young age of these women who are heart survivors never fails to astound and shock me - at 54 I can see having a heart attack, but not in my 20's.  there are also lots of 30 and 40 year olds on this site too - all very young women with life altering health events.

Each time one of you mentions problems that sound cardiac related, you can anticipate that I will climb up on the soapbox and lecture about the need to get medical care immediately and answer your heart questions, even before the MS ones.  I do this because you are never too young to have a heart attack.  You are never the wrong sex to have a heart problem.  Cardiac symptoms come in all shapes and sizes and intensities and we shouldn't be second-guessing whether we should be treated or not.  

We still have not heard back from SandW or her family - the last news was she was still in ICU - day 18 and counting  a while back - from suffering a massive heart attack.  She was worried that she had MS ... and was trying to get a doctor to look at her symptoms.  When I went back and read her correspondence it made me so angry because she was trying to get the attention of the medical system about her heart and the MS and no one was listening to the urgency in her need for treatment.

Please all of you, don't take your heart health for granted.  Know your numbers - cholesterol and blood pressure.  If you have even the slightest suspicion that something is wrong get it checked.  If you made it this far in reading, thanks for listening to my ramblings.  If  I make a difference with just one of you with my rants and lectures, my job will have been well done.

Climbing down now,
Laura

[wonko]

I don't know how "standard" it is, but one of the first tests my PCP did when I came in with tingling/pins and needles was an EKG and heart echo.

MedHelp has a blood pressure tracker that you can add to your profile.  I keep meaning to get a cuff for home use, and I appreciate our split personality CL (LuLu/Laura) sharing her insights on heart health.

It's so easy to get wrapped up in Limboitis we can lose sight that ALL aspects of our health are important.  I'm sure the dx'ed folks likewise need to stop and take in all of their medical status, not just the neurological side.

Does anyone know if EKG/echo are warranted when tingling is a symptom, or am I just lucky that this base was covered?

[Lulu54]

Sunny and all,
The only thanks I want is the report from your cardiologists!!! LOL

My heartfelt best to you, Lulu/Laura

[Sunnytoday]

Lulu,
I listened, and I listened well. :) This is one person who will behave due to your soapbox.

I've started as of today, charting my BP every morning, and I'm finding a local lady cardiologist who will look over my numbers, check my heart arythmia, and the possible left side enlargment and my EKG's and my hopsital charts and then maybe switch my meds. I will post them on the BP ticker on here every so often so I see the up and downs and so I can print them off for the doctor.  

Thanks for the time you took in writing this up and talking to me. :)  
~Sunnytoday~

[doni54]

Thank you Lulu, I could tell that came from the heart.  

It saddens me also when we get young people on here who are having health issues.  For example Sunny, who is just at the beginning of her adulthood, it is really heart wrenching.

I watched my father deal with heart disease...2 open heart surgeries.... stents..... angioplasty.  So I know what a scary disease it is.  It is hard to believe so many young people are going through this.

God Bless you, Lulu,
doni

[Lulu54]

Dear Imax,
there is such mixed reports on statins that it wouldn't surprise me if they were contrindicated for ms patients.  I was on them for about 6 weeks after my MI but then had to stop - the side effects were horrible - headache, diahrrea, in particular was bad.  They immediately dropped my count to 112, a very acceptable number but the side effects werren't worth it.  I am now at 238 and working to keep it down by exercise and diet.  The argument now is we need cholesterol in our bodies to keep us lubricated - perhaps that has something to do with the ms angle?


Good luck in going back to work - these young women just startle me everytime I come across a new member in this group.  It makes me wonder what are we doing to our bodies with our diet and environment that younger and younger women are suffering cardiac problems.  

Be well,
Lulu/Laura

[lmax0021]

Hi
You post struck a strong chord in me. I work in a post cardiac procedure area and we are seeing younger and younger patients all the time. Many of them had their s/s dismissed by pmds and er docs and ended up needing stents and or having heart attacks. I try and stress to them that a person knows their own body. If they know that there is something wrong and the md tells them differently....find one who will listen!!!  It is no longer uncommon for us to angioplasty and stent patients in their 30s and 40s.

One question I do have though, has anyone heard anything about ms and statins (cholesterol lowering meds)? I believe that i came across an article awhile back saying that they were contraindicated for ms patients but I am not sure where I found it.

I just went back to work today since all of this and I havent yet gotten the nerve up to tell everybody. Once I am a little more comfortable with everything I will start questioning the docs a little more on cardiac-ms connections.

[Sarahsmom46]

You did make a difference and thanks.  What you said was well stated and thought provoking.  Again, thanks for bringing this important and and treatable illness to our attention.