Again, let me say that I
am not a doctor and I can neither diagnose nor prescribe. I am a genealogist
with a scientific bent and a patient ADVOCATE. I can tell you about my illness
and the way that I dealt with it. It is up to you to decide for yourself your
course. I encourage you to read and complete the following questionnaire, but
first a word on HOW to present this to your own doctor.
In order for your doctor to listen to you, you must talk to him about
yourself and your problems and he must listen to you. I have been told that
doctors listen to the first 23 seconds of what patients say. So you must be
quick and you must make a strong statement. Here is one that you can practice
before a mirror or a family member that may be of some help.
Dr.______ I am a genealogist and I have been researching my family tree. I
have found that I have ancestry from a fascinating group of people called
Melungeons in one (or more) of my family lines. The Melungeons have a
Mediterranean ancestry. Many Melungeon descendants are finding that they
have one or more inherited Mediterranean illnesses. I have found what is thought
to be a rare disease in America that fits many of my symptoms through this
research. ONE of the symptoms of this disease is 'fibromyalgia.' I want
you to consider giving me a trial course of the medicine for this illness. I
have been told that the med is not harmful taken for 30 days even if I do not
have the inherited illness, and I will know within that time period whether or
not it will help me. I know of about TWO HUNDRED (200) people with this ancestry
who have tried the meds in the last two years and who are receiving help and
feeling better. I also want to feel better and I know that you want me to feel
better too! The medicine I want to try is called colchicine and the inherited
illness is called Familial Mediterranean Fever. I need a prescription for 0.6mgs
of colchicine to be taken twice a day for 30 days. If this does not help me, I
will tell you and stop taking the medicine. I think it will help and I want to
If your doctor laughs at you, hold up your hand in the stop position and
say ‘Stop laughing. Do not laugh at me!’ I am serious about this and I
want to try the medication. Hand him the document you have copied from
Medscape, entitled Fibromyalgia in familial Mediterranean fever. Each time your
doctor says something there after, say “I am serious about this and I want to
try colchicine.” You may also say, “I have tried every other medicine you have
given me without any improvement. I want to try colchicine.” You may also then
show him the questionnaire and ask if he would like to go over it with you.
(Colchicine is pronounced Coal-chuh-seen.)
If he does not listen, you might want to consider going to another doctor.
I went to three others before I found one who understood that I take the lead in
my own health care; that I listen to the doctor and ask questions and then make
up my own mind about what is happening to me. Although my doctor told me that he
didn’t think I had this illness, he agreed to give me a trial of the med. It is
working. I have not had to take an anti-inflammatory for about a year now,
except for an occasional headache. My doctor and I are both pleased.
Some folks are reporting that it is easier to tell the doctor that a
sibling or parent has just been diagnosed with this illness and since they had
similar symptoms, they want a trial of the med too. It seems to be working since
all have taken colchicine and are improving. I am not advocating this, just
telling you what has been used.
I also suggest that you take someone with you, preferably a male if he will
go. Doctors listen to men better than they do women and because you may be
nervous, having a hubby or friend with you will help you to be more calm and
collected and able to remember all the things that you wanted to talk with your
doctor about. And if he has lived with you and seen your pain, he will be
able to verify for the doctor that these symptoms are accurate. While I would
prefer this not to be necessary, it does work for some doctors.
Note that the MAIN SYMPTOMS OF Familial Mediterranean Fever of the
that they have discovered are:
1. FMF is periodic/recurrent
2. Periodic fevers of 101-103, with chills and possibly night sweats. (THIS
IS IMPORTANT!!! You might want to take your temperature at the same time each
day for a month to get your normal temp. Mine is about 95.6 to 97.5, so if I
have a 98.6 temp I have a fever. Record the temperature to take with you to your
doctor. If on any day that you are taking your temperature, you feel at a
different time that you might have a fever, take your temperature then as well
and note any difference. )
6. Acute short-lived painful bouts of stomach pain (may be followed
Diarrhea) and frequently misdiagnosed as appendicitis, kidney,
7. Pleuritis, inflammation of the lining of the body cavities, which in
acute stage may produce stabbing pain in the right side or of the
(mine started there and spread throughout my stomach or I had problems
chest pain, breast bone pain.)
8. A short dry cough
9. Muscle and joint pain frequently diagnosed as fibromyalgia and either
osteo OR rheumatoid arthritis
During a crisis of FMF, the RA Factor rises
just as it does with Rheumatoid Arthritis.
10. Nephropathic amyloidosis (can lead to kidney failure)
11. Infertility and pregnancy loss more common.
These are the most important symptoms that you must stress to your doctor
are to get this diagnosis and IF you have any or all of them. The
symptoms that are in this chart are the secondary symptoms that I
with this illness. Print out the following questionnaire and answer
The following is a list of symptoms associated with
Mediterranean Fever. Please take a few minutes to read through the
then go back and place a check mark in the yes or no columns for
symptom you feel that you have either NOW or had in the PAST.
Write a brief
description below each symptom you have marked, including WHEN
experienced the particular symptom and its DURATION. Please take
with you when you see your physician to ensure that you don't
mention any of the symptoms you have been experiencing. Make two
this so that you can give one to your doctor after you have talked
about these things, and still have a copy for yourself. Start
questionnaire from this point.
GENERAL QUESTIONS ABOUT YOUR HEALTH:
Your doctor needs to know this
information about you.
A. Are you working?
1. Are you now working?
YES ___ NO ___
2. If not, could you work all day, five days a week, year
round? YES ___ NO___
3. Did problems with your health stop you from
working? YES ___ NO ___
4. When did you stop working if so?
month, ____day, ____ year___
B. Activities of Daily Living: Consider a month
to be 30 days.
1. How many good days a month do you have when you feel well
and complete all living and home care activities? Number of days ____
many fair days do you have a month where you can function, but have serious
difficulty doing so, and fail to complete some living and home care activities?
Number of days_____
3. How many bad days do you have where you function
poorly or not at all and fail to complete most living and home care activities.
Number of days ____
FAMILIAL MEDITERRANEAN FEVER SYMPTOMS QUESTIONNAIRE
1. My symptoms have been recurring periodically for many
These symptoms are growing worse
and I have been given MANY different
2. I have had periodic, recurrent fevers of 101-103 degrees. ___yes
(Think about the flu and cold symptoms you may have
suffered. Could it
have been something else?)
3. I have had chills and/or night sweats. ___yes ___no
4. I have had acute, short painful bouts of stomach pain over the
as far back as childhood..
___no (See # 5)
5. I have been diagnosed with:
Kidney stones ___yes
Gall stones ___yes
Other, describe ___yes
Were any of the above diagnoses proven
true? ___yes ___no
which ones, noting any surgeries you have had for these
6. I have been treated for kidney problems (inflammation,
etc.) ____yes ___no
I have been diagnosed with Nephropathic amyloidosis (can lead to
failure) ___yes ___no ___ don't know
7. I have had stabbing pains in my chest cavity or breast bone area
were NOT connected to heart problems. ___yes ___no
(See number 8)
8.I have been diagnosed with:
Collapsed lung ___yes
Costochronditis _____ yes
Relapsing Polychondritis ______yes ________no
Where any of these found to be actual problems? ___yes
list which ones.)
9. I frequently/periodically have unexplained swollen lymph nodes?
10. I have or have had a short dry cough. ___yes
11. I have or have had skin rashes periodically. ___yes
___no Number of
Do you or any members of your family
suffer with VITILIGO or loss of
pigmentation (skin coloring?)___yes
12. I have suffered with depression ___yes
___no Age at onset of
years duration: _________
If you have taken
antidepressants, please list which ones.
13. I have had problems with infertility and/or pregnancy loss.
14. I have had severe muscle and joint pain for many years. ____yes
How many years? ____ My pain seems
to move from joint to joint.
(See number 15.)
15. I have been diagnosed with:
Rheumatoid arthritis ___yes
Chronic fatigue syndrome ___yes
____yes ____ no
Any other fairly rare disease _____yes _____no
Name the illness ___________________________
medicines (aspirin, ibuprofen) and other anti-inflammatories
do NOT help my
pain or just slightly dull it. ____yes _____no
16. I have morning stiffness. ___yes ___no
17. I have muscle weakness, for example getting up out of a chair or
18. I have suffered from anxiety. ___yes ___no Number
of years: ________
Please list any
medications that you have taken for this.
19. I have suffered with confusion or disorientation. ___yes
20. At times I have difficulty concentrating. ___yes ___no
21. At times I have experienced dizziness/light headedness. ___yes
22. At times I suffer from memory loss, such as not remembering a word
are sure you know, or forgetting the name of a relative or close
23. I have SEVERE fatigue. ___yes
Give several examples of when, where and
how you have fatigue. (Do you
need assistance with household chores? What
kind and how often? What happens
when you try to do things you used to
24. I have headaches. ___yes ___no Frequency: _____________
whether these are tension headaches, sinus, migraine or cluster
25. I have mood swings and/or am irritable. ___yes __no
26. I do not sleep well nor do I feel refreshed upon arising. ___yes
Have you been to a sleep clinic?
___yes ___no When?___________
27. I am absolutely unable to exercise. ___yes ___no (This means
NOT ABLE to exercise, not that you just don't like to or can't find
to exercise.) What happens to you if you try to exercise? Can you
house regularly or do you require assistance?
28. I have a reduced sex drive. ___yes ___no
29. I know that I have ancestry from the Mediterranean areas such as
Portugal, Italy, Greece, Turkey, or Jewish or Arab ancestry, or
ancestry. Or any other ancestry from around the Mediterranean.
31. I have the following physical characteristics which are known to
connected to Melungeon ancestry:
A. Back of
ears ( ___x___ )
ears x marks the bump's
the ridge is the line __
The `bump' is called an Anatolian bump and originates in the
region of Turkey ONLY.
The ridge, which is an enlargement of the
base of the skull, is called a
Central Asian Cranial Ridge and is found in
the areas of Central Asia ONLY.
These traits are found in the descendants of
those who lived there.
Melungeon descendants have these characteristics in at
least 75% of the
B. Asian Shovel Teeth:
The backs of the first four
upper and lower teeth are differentiated in
descendants of Northern European
descendents and those of the Mediterranean,
Native American and Melungeon
Side view of teeth:
Asian Shovel Teeth
Asian Shovel Teeth also have a ridge at the gumline. Think of adding an L
the top of the ) so that the end of the bottom part of the L touches the
of the ).___yes ___no
C. Asian eyefolds.
Native Americans, Asians and
Melungeon descendants may have an
eyefold.This is rather difficult to
describe. At the inner corner of the
eye, the upper lid attaches
slightly lower than the lower lid. That is to
say that, it overlaps the
bottom lid. If you place your finger just under
the inner corner of the
eye and gently pull down, a wrinkle will form which
makes the fold more
visible. Some people call these eyes, "sleepy eyes,
bedroom eyes." Many Indian descendants also have these kinds of
Asian Eyefold: nose /-
0 > Northern European eye <
^ place your finger
Asian eyefold? ___yes ___no
D. Skin Coloring:
Some Melungeon descendants
may have very dark skin tones or have a
reddish, coppery cast to their
skins.Vitiligo or loss of pigmentation of the
skin may run in these families.
Is your skin coloring darker than what is
considered the 'norm' for European
skin tones? ___yes
Vitilgo? Yourself? ___yes ___no Family ___yes
E. Some Melungeon families are known to have 6 fingers or toes. Do you
anyone of your family have this physical
Yourself? ___yes ___no Family? ___yes ___no
HEALTH EDUCATION AND SUPPORT
ONE HUNDRED and
SIXTY-NINE Melungeon and associated
A Melungeon mailing
list that is family friendly - send an e-mail
includes several urls.
Melungeon Information and Common Surname
Diagrams of physical
YOUR family? Inherited? Maybe!!
(Select: Index/Nancy's Corner/The
(Select: Index/The Melungeon Media
Searching SPARKS, HAGER, JAYNE, RAMEY/REMY, COLLINS, MUSICK,
MAYO, CAREY/CARY NAPIER,QUEEN, PERDUE, KELLEY, LETT,