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Celeste
Unregistered User
(3/8/03 1:47 am)
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Doctors and FMD -- never ending story
While visiting doctor at University of Maryland today to address diabetic and blood pressure issues, the subject of Fibromuscular Dysplasia came up. (I want to point out, that I never use the FMD acronym because I don’t want to confuse this with Foot and Mouth Desease, or anything else.)

The subject of Fibromuscular Dysplasia dealt with the newly diagnosed iliac Fibromuscular Dysplasia affecting the right leg, as it relates to the dangers of Diabetes.

After limited discussion, the doctor left the room to consult with another doctor who was very warm and understanding. As she sat down she began to relay her concern about people making a large issue of "Fibromuscular Dysplasia" and are not dealing with pain. She continued by saying that I should visit the Women’s Clinic and deal with the FIBROMYALGIA and move forward. She wanted to know when and who diagnosed me, and what was the medical information recorded in my medical files on the subject.

I pointed out to her that we were talking about two different issues, Fibromuscular Dysplasia is a vascular disease.... she interrupted and said, "they are very similar" At that moment I realized that her was in left field and was making a judgement based on her understanding that I was talking about vascular issues and should not be because Fibromyalgia is not a vascular issue!

When she left the room, I pointed out to the remaining doctor, that I was confused with the switch from talking about Fibromuscular Dysplasia and Fibromyalgia, and related to her once more that these were two different issues; she just smiled and looked away after saying she was also confused. I realized this one was also patronizing me...after all, it is I who is confused.

On my drive home, I shared the moment with my husband and it occurred to me that my medical team has no clue as to Fibromuscular Dysplasia and would not know how to recognize blood pressure issues or other Fibromuscular Dysplasia issues as they related to me because they were thinking ~ Fibromyalgia. I will point out that I have given them information in the past...I recognized they never read it.

At that moment, I realized that I needed to do something about it. Before my next appointment in June, I will have prepared information generated by medical staffs in Chicago; Q&A that I prepared on the subject; and information about links where there are discussions on FMD ~ give it to my doctors, but also drop them at as many places as I could.

~~~ I did not want other patients to be looked at or cared for with the same ignorance as those two doctors today, and I made myself responsible to share information once again with as many people as I could

Celeste

PS: Fibromuscular Dysplasia localized in the carotids and Iliac. Multiple opthlamic aneurysms and renal aneurysms ~ but fighting the good fight every day.

soficrow
Unregistered User
(3/13/03 11:34 am)
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FMD and fibromyalgia
Very many of us are diagnosed with fibromyalgia, as well as FMD.

Some of us (like Celeste and me) got steamed because we thought it
was a mis-diagnosis showing our doctors' ignorance about FMD. We
thought that when they told us we had fibromyalgia, it meant they
didn't know what FMD is - or weren't taking the FMD seriously –
and/or weren't willing to look properly at the `systemic' effects of
this disease.

When I got Celeste's email (following), I decided to do some
research. My research already shows that FMD causes pain. FMD
related pain can result from lots of things – especially – tissue
and organ ischemias and infarcts, sympathetic nervous system
response, and bradykinin release. [Bradykinin is a natural substance
in our bodies that is released to make our blood vessels dilate. It
causes spasms, which can result in pain with FMD.] …But I had never
looked up FMD and fibromyalgia together.

Guess what? FMD causes fibromyalgia.

Fibromyalgia is just a term, more a disorder (or effect) than a
disease – it usually applies to pain that can't be explained
medically – but some of it has been documented to result
from "vascular" diseases.

It looks like `fibromyalgia' is being used to describe the pain many
of us feel, which is caused by FMD in areas of our body that can't
be tracked or treated by angio.

More on this later.

Peace, and light,
Lanie
:rolleyes

tjanke
Unregistered User
(4/2/03 11:53 am)
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FMD & FM
I just read your comment on FMD and FM. I have never been to a "forum" site - but am very interested in some information about FMD and pain.

I am 45 years old, was diagnosed with FM probably 12 years ago - and FMD in 2000 after having an occlusion (total blockage) of the left anterior carotid artery. I have also had a back surgery fusing my L5-S1 vertebral spine, and am currently experiencing an increase in pain in my right leg and foot, which I am attributing to possible nerve involvement in the low back.

However, your comments intrigued me, and I wonder if the pain (especially calf and behind the knee) are FMD related. I have found very little about FMD - other than the renal and carotid involvement - that explain the symptoms or how it can effect the entire body.

Can you share with me where you found information on FMD?

Thanks!
tjanke

MSBorden
Unregistered User
(4/29/05 2:33 pm)
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FMD
Could someone help me to understand why a doctor would say that I did not have a reoccurance of FMD from seven years ago because I did not have abnormal labs? When I had my angio done at Mayos I am not aware that this was ever used as a benchmark for diagnosis. Am I wrong or just plain crazy :) Thanks!!!

Rick
Unregistered User
(5/2/05 5:52 am)
Reply
a recurrence of FMD
You can only have this vascular disease one time not twice as in recurrence,as for bench marking (7 years ago) the particular artery or arteries affected,good point,It sounds like your FMD is stable in the artery or arteries examined from that time to the present time.A word of advice for those people that have this disease.DO NOT SMOKE,or DRINK ALCOHOL excessively.

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