underlyinhg diseases??

[ericaj]

Has anyone here ever heard of NMH or POTS? (neurally mediated hypotension
and postural orthostatic tachycardia syndrome) Anyone know anyone with it
or what there treatment regimen was?

Currently going though the workup stage to try and figure what is going on with my body - the Drs. think either a collagen vasc. disease or a conn. tiss.
disease .. but uncertain of whikch one or why.. See my ACHD Cardio on tues. and then sleep study on weds. and Genetics on Jan. 17th.

Just looking for any info or anyone elses experiences with any of the above dx's? or any experience with any of the linking diseasaes? (CTD or CVD's)

Thanks a ton for any help!!

Erica

 

[geebee]

Erica,
Have you seen a rheumatologist (sp?) to rule out fibromyalgia? Here are some of the symptoms of fibromyalgia and some experts feel it can be triggered by major illness/surgery as well as major life stress. It is a REAL disease although still controversial since it is one of those "rule out everything else" symdromes.

"Several other diseases, such as arthritis, thyroid disease, and connective tissue disease, have some symptoms in common with fibromyalgia. No specific test directly confirms fibromyalgia, so it is often difficult to diagnose. Many tests can rule out other illnesses like Lyme disease or arthritis. If you wonder if you may have this disease, there are some specific symptoms, particularly body achiness and pain "everywhere." If at least 11 of 18 tender points are present with other symptoms like pain that is worse in the morning, increased muscle stiffness, daily fatigue, difficulty sleeping, headaches, PMS, chest pain, TMJ pain, or intolerance to cold weather, then you may very well be suffering with fibromyalgia. Depression or anxiety is also associated with this disease. These symptoms are very real but seem vague and inconsistent in the body. You may not "feel well." "

Here is the link to the website where I got this quote and there is additional info there:

http://www.naturalawakenings.com/archives/2001-05-fibromyalgia.html

This website is one that sells products (I am not familar with their products) but there are many other sites out there with info.

I suffer from many of the classic fibromyalgia symptoms and my doctors feel it was brought on by my many surgeries.

Just some more food for thought.
Smiles,
Gina

 

[ericaj]

Gina

Gina

Hi Gina,

Thank you for looking up that website information for me and for the general info on what you have went through and experienced! Although I am fairly certain it is not Fibromyalgia that I have - the possibility is always there.

I'll leave you with what I all have adn/or the Drs. have noted as being abnormal with me. (Kinda will make me sound very weird but not really)

Started with the heart stuff: Aortic valve Bicuspid: AI/AS and then Mitral Vlv.
Regurg caused by the Ao.Valve. (Myxomatous) and trace Pulm Ins. Then Carpal Tunnel Syndrome at age 16-17 w/severe muscle loss in hands. Various undefined abnormal shaped body parts. (A narrow small forehead, high arches on feet, curled toes, inability to completely straighten elbows, abnormal chest wall shape, abnormal closing of trachea when lying down, a small mouth) - really I do look like a normal person, just unusual things to the Drs. Also have the possible NMH and arrhythmia. And there are probably other tihngs I am forgetting.

Anyways, again thank you for your help!

Erica

 

[geebee]

Hi Erica,
You are welcome. It definitely sounds like you have some type of CTD but, since I am far from an expert, I would not be able to provide much else.
I will be thinking of you as you traipse through the multitude of doctors to identify your underlying causes. I truly can empathize with the "not again" crap that they can feed us. Sometimes you just want them to find something - ANYTHING - because you want to feel sane again. Pretty bad that they make us WANT to be sick to get better???????
If I discover anything further on CTD that might help, I will be happy to send it your way.
Good luck and smiles,
Gina

 

[ericaj]

Gina

Gina

Gina,

Out of my 4 Drs. not inclkuding my Family Dr., my Cardio, My Pulm., my past Peds Card. (who i keep in touch with almost weekly or more sometimes ) and apparently now too the Genetics people, believe there is either an underlying CTD or CVD causing the many different things with me. Will see my Cardio and my EP tues. and hopefully run into my Pulm somewhere in there too as I like her.

Will up date when I get home later tuesday night. Thank you for your thoughts!

Erica

 

[bvdr]

Erica, I'll be watching for your post as you have me fully intrigued. Rheumatic fever is considered by most as a form of connective tissue disease because of the intense self destructive immunologic response to the type of Strep involved. I know of no connection however of that and a bi-cuspid valve.

There is no rule though that a person with a bi-cuspid valve would not also get RF and not be diagnosed until later in life. There are several of us on the board who had rheumatic fever and were not diagnosed with it until the damage advanced to the point that it caused symptoms. I'm not writing this because I think that this is the case with you but I know everyone is trying to "think outside the box".

 

[Arlyss]

Bicuspid Aortic Valve Disease is a Connective Tissue Disorder

Bicuspid Aortic Valve Disease is a Connective Tissue Disorder

Hi Erica,
This is still an emerging thought in medicine and so somewhat controversial, but bicuspid aortic valve disease is increasingly viewed as a connective tissue disorder that may affect areas throughout the body. This is what is described as various "musculoskeletal affects". Most of those I know with the greatest variety of effects are women, but that may just be anecdotal. I know someone very well who in addition to a bicuspid valve and ascending anuerysm has a very long list of things including carpal tunnel syndrome, raynaude's, cardiac arrhythmias, small teeth, etc. This person went through a lot of evaluation because she was fainting - it turned out she needed a pacemaker at a young age! Her blood pressure is also low. Reading your post reminds me of her, although she is flexible and athletic.
Others have scoliosis, near-sightedness, problems with spinal discs, etc. Women may have difficult pregnancies, and their organs may later prolapse and require a hysterectromy. Often, people are more flexible and are very good athletes, but there is no reason to think that the opposite affect, where joints do no straighten, may not also be possible. What is happening is certainly not fully understood. The eyes, mouth, spine and cardiovascular system, where the bicuspid aortic valve is seen, are typical areas where these quite subtle characteristics are found. Usually, because they are quite subtle and people certainly look normal, these areas are not noticed or the connection is not made with their heart condition.
It might help you to review how bicuspid aortic valve disease is described on the Bicuspid Aortic Foundation website at http://www.bicuspidfoundation.com
Please feel free to email me if you would like more detail.
Best Wishes,
Arlyss

 

[ericaj]

Betty, Arlyss

Betty, Arlyss

Betty,

You are not so much thinking outside of the box atleast you are obviously not the only one, all of my Doctors are looking in different areas but all agree that there must be something underlying to cause this all. Interestingly enough my Cardio who I see tomorrow also suspects rheumatic fever but also not sure how or when it would have played into the whole scenarion with me as I don't remember ever having it in the past - but there is always the possiblity. He has told me and also mentioned it in his report that he believes this has some effect on atleast the heart stuff. Can I ask you, have you had other problems besides the valve problems as a result of your RF?

Arlyss,

I will definetly go check that site out I am interested and if you have other info that you know of or would like to share please do!! - I am very much looking for as much information as I can get. I listed my problems above so you can pick and choose what if any of it you know of - your friend there certainly does sound alot like me minus the flexibilty - I definetly don't have that ..

Thanks Betty and Arlyss!!

 

[Abbanabba]

Hi Erica, I think my former Dr was trying to investigate the possibility of me having NMH... mainly due to my low BP and constant dizziness. I was supposed to have a tilt-test done which is used to help diagnose NMH, but unfortunately it wasn't done.

It's also linked to Chronic Fatigue (as is fybromyalgia and several other things) and given that my cardios don't seem to think my heart is the issue yet, it looks like CF or NMH may be the few options left to explain my symptoms.

By the way, I also had a sleep study done - although I thought it was a pretty half-assed effort (there were no leads attached to track brain wave patterns, just heart leads and an oxygen meter which I think relyed on the nurses on duty noticing any changes.... I don't even think the readings were recorded) so I don't think anything conclusive came from it.

Anyway, I hope your tests provide you with some answers.

All the best
Anna : )

 

[bvdr]

Betty,

You are not so much thinking outside of the box at least you are obviously not the only one, all of my Doctors are looking in different areas but all agree that there must be something underlying to cause this all. Interestingly enough my Cardio who I see tomorrow also suspects rheumatic fever but also not sure how or when it would have played into the whole scenarion with me as I don't remember ever having it in the past - but there is always the possiblity. He has told me and also mentioned it in his report that he believes this has some effect on atleast the heart stuff. Can I ask you, have you had other problems besides the valve problems as a result of your R


Erica,

I only found out about having had RF after I was diagnosed with mitral stenosis,MR,AR,TR and pulmonary hypertension. This was almost exactly two years ago. I think I know when I may have had it but I'll never know for sure. If I'm right then it was when I was 14 (going on 15 ). It was in the same school year that I had whooping cough and had the radiation treatments (a long obsolete treatment now) for it. At the time it was suspected that I had just gotten too active, too fast after recovering from whooping cough and being run down I got MONO. I know I was exhausted and developed arthritis that has always stayed with me. Not a deforming kind but stiff, sore joints. I also had problems with Baker's cysts behind my knees.I did have ankle surgery many years ago for what the orthopedic doctor later referred to as "rheumatoid arthritic joint" though my Rheumatoid Factor has never been positive that I can recall. I also had a disc removed from my back several years ago. For years I had raynauds type problems with my hands in the cool weather but that seems to have faded away. I guess I was in my late thirties when I had recurrent bouts of pyleonephritis and the diagnosis at that time was suspected SLE(systemic lupus) but the kidneys eventually healed up. About the same time I developed hypertension and have been on blood pressure medication for over twenty years for that. Oh, I forgot about the migraines.....and the other body parts that I've had to have removed since they wore out .

Erica, I have always been resistant to colds, flu, and except for my body parts and systems giving me problems I have always considered myself to be pretty healthy. For the most part I always had plenty of energy and looked very healthy. I have improved with the MVR but I have to admit, I have never recouped my energy and still battle some shortness of breath.

What of the above is connected to RF, if any of it, I don't know. I just know that for years the issue of a connective tissue disease has popped up every now and then. No definite diagnosis ......just suspicions.