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About Tina
(Top Expert on this page)

Expertise
I can help on all aspects of the condition, treatment, support. I cannot diagnose but only give my personal expertise, and refer you to others who can help. I am in touch with doctors, therapists, and professionals on a regular basis. I can help with disability issues pertaining to lymphedema or cancer.

Experience
13 year cancer survivor, Lymphland Support group owner, Owner of Lymphland.com website, writer for Butterfly Gazette, forums coordinator for ELymphNotes online lymphedema magazine, patient and advocate for 10 years, Yahoo answers advanced level answerer.

Organizations
Lymphland Support Group Owner, Lymphland.com website owner, National Lymphedema Network member, American Society of Lymphology member, ELymphNotes forums coordinator and writer, member of many online support groups. Rainbow Bridge Pet Loss Grief Counselor, former bank loan rep, pharmacy ass't

Education/Credentials
college graduate, volunteer in pet loss grief counselling.

   

You are here:  Experts > Health/Fitness > Rare/Orphan Diseases > Rare Diseases

Questions Answered By Expert  Tina 
In Category  Rare Diseases

SubjectDate Asked

severe edema after knee replacement8/17/2008
  Q: About the four day after my surgery, I began to have severe edema in my calf, ankle, and foot in the ...
  A: First off have you had any swelling prior to the knee replacement? Also, is there any other members ...
Rickets8/17/2008
  Q: I am a 16 years old male that has genetic Rickets from my mom My Right arm is curved with little ...
  A: The bumps could be from small fractures that cause scar tissue, cysts, osteoid bumps, many causes. ...
noonan syndrome8/14/2008
  Q: I was wondering if there is any connection to noonan syndrome and a parent's exposure to agent ...
  A: A parent could carry the gene but not be affected but again with alot of conditions and illnesses, ...
Rickets8/11/2008
  Q: I am a 16 years old male that has genetic Rickets from my mom My Right arm is curved with little ...
  A: Not all people with rickets are short. X-linked hypophosphatemia is another name for hereditary ...
Rare and undiagnosed condition8/7/2008
  Q: I am writing about my mother who has suffered from a degenerative and yet undiagnosed condition for ...
  A: The best place to find a specialist for lewy body disease would be the Mayo clinic. I'm going to ...
Human de-worming7/21/2008
  Q: Got three cats. Found out one of them has worms, and it isn't the one cat who is allowed to go ...
  A: I would take one of the cats to the vet and have the type of worm diagnosed, you need to treat all ...
Daughter not breathing7/20/2008
  Q: My 9-yr-old daughter has a condition where she just stops breathing altogether (she can't exhale). ...
  A: It sounds like an apnea type problem, maybe trachea caudal displacement and it's possible that she ...
rabies?7/19/2008
  Q: I live in a suburb of Illinois. The other day, I was walking out of my office about 3:00 in the ...
  A: How big do you think the item was that hit you, did it feel hard like a baseball or more soft? Bats ...
Right side pain7/18/2008
  Q: I'm hoping you can help shed some light on my problem. I have had pain on my right side since ...
  A: I'm sorry you are having pain and it sure is frustrating to not know where it's coming from or what ...
A question for you7/17/2008
  Q: A few years ago, I started not feeling right and went to see my doctor. After all kinds of tests ...
  A: There's a few different kinds of metabolic disorders, there's Addison's Disease, Fabry's, ...
rabies fear7/15/2008
  Q: Greetings from Turkey.Let me explain my biggest fear.About one month ago i saw a little pretty cat ...
  A: First no your wife cannot get the virus from you and I highly doubt you even have it nor will you ...
Myelofibrosis7/14/2008
  Q: My mum was diagnosed with myelofibrosis. her symptoms were very low red blood cell count, easily out ...
  A: I'm sorry your mom is not feeling well. There is no known cure for myelofibrosis, but there are ...
Hyperinsulinism/Hyperammonemia GDH7/13/2008
  Q: Our daughter became the 20th child with this diagnosis, in the nation. There is no cure for her. I ...
  A: First I would say the injury is at least temporarily disabling, so you would be eligible for ...
persistant testicular pain7/12/2008
  Q: i have been having persistent left testicle pain for approx. 10 months. In a 1-10 scale of pain it ...
  A: It sounds like it could be some type of noninflammatory chronic pelvic pain syndrome, maybe ...
superficial thrombopheblitias6/14/2008
  Q: My name is Jessica and I am 25 years old. I have been suffering with calf pain for almost 7 years ...
  A: has your doctor referred you to anyone else or just tried to treat things himself? You should be ...
Autoimmune problems6/13/2008
  Q: I am 61 years old, have been treated for autoimmune problems, with chemo and plasma exchange (no ...
  A: Kenneth, what type of autoimmune problems were you diagnosed with? Is it of a leukemia type, or MS? ...
chronic jaw pain6/7/2008
  Q: Since having a wisdom tooth extracted (in 2003), I have been in constant pain; is excercebated when ...
  A: I apologize that I didn't reply sooner, family emergency. Leg discrepancy can cause all sorts of ...
multiple lipomas5/21/2008
  Q: Do you know of any successful therapies (holistic or otherwise)for multiple lipomas? Thank you so ...
  A: The standard treatment for lipomas is either steriod shots, liposuction or surgery to remove the ...
generalized lipodystrophy5/15/2008
  Q: My brother suffers from generalized lipodystrophy since childhood. Since it is a rare disorder I ...
  A: Tell me a little more about his health, what other problems and conditions does he have? What tests ...
staph4/6/2008
  Q: My daughter had a complete hysterectomy last July and contracted staph in the hospital. Since that ...
  A: Greetings Pam, the best bet is for her to see the infectious disease specialist. They need to do ...
Acute Transverse Myelitis3/24/2008
  Q: Even getting the diagnosis was an unbeliveable experience, but basically, he had an intrathecal pain ...
  A: Your husband has had a rough time, it's very hard not only physically but emotionally for him as ...
lymph edema3/16/2008
  Q: I have had lymph edema for a few years. I had total knee replacement surgery 01-30-08. I did fine ...
  A: I have known many others with lymphedema that have had knee replacements. It's mixed results. Some ...
head,facial, eye and ear pain3/8/2008
  Q: Here's my issue -- I have been in terrible eye,ear and facial pain for over 6 years now. I can't ...
  A: I'm from NY too, it was a very traumatic experience to see the planes hitting the towers and the end ...
Finger Injury3/6/2008
  Q: Three months (Dec 07) ago I poked my finger with a knife that was soaking with silverware patients ...
  A: I can give you my opinion but I can't diagnose. What probably happened is a soft tissue infection, ...
uncontroled mucslesmovement3/6/2008
  Q: I'm Patricia, 34 years old. Since I was 16 my muscles in my body started to move (bouncing up and ...
  A: I'm a little concerned, what tests have they done to rule out other problems ? Restless leg ...
two diseases I am trying to learn about3/5/2008
  Q: Have you heard of a disease where a cucumber seed gets stuck in someone's body ? Do you have any ...
  A: it could be that seeds of many different kinds do stick in the body, mostly in pockets in the colon ...
TESTICULAR PAIN2/27/2008
  Q: I was am suffering from left testicular pain sometimes in right from last 1 month i went to ...
  A: shehzad, When the pain first started, what was happening in your life? What do you remember doing ...
TESTICULAR PAIN2/25/2008
  Q: I was am suffering from left testicular pain sometimes in right from last 1 month i went to ...
  A: First off, have you had any injuries? vasectomy? are you active in sports? I'm just tossing ...
guinea worms2/22/2008
  Q: can the guinea worm kill you in any way?
  A: Greetings, Sean Death from the worm is very unlikely, unless there is some other complication such ...
fist disease1/30/2008
  Q: My 3 1/2 year old daughter was just diagnosed with fist disease. She has the red cheeks, but no ...
  A: Greetings Kelly, Fifth disease is caused by parvovirus B19, it's a virus and behaves similar to a ...
rare diseases should hmos pay1/23/2008
  Q: I am writing a paper on the health care system of the United States, and to my understanding HMOs do ...
  A: Greetings Paul, I believe that insurance companies should pay for experimental testing because of ...
wots going on?...its stil going on!1/10/2008
  Q: i wrote to u in august regarding my absent periods,breast milk etc..wel,im stil non the wiser but ...
  A: I would go to your g.p. and tell him/her that you want a referral to an endocrinologist because they ...
wots going on?...its stil going on!1/10/2008
  Q: i wrote to u in august regarding my absent periods,breast milk etc..wel,im stil non the wiser but ...
  A: I think you need to find an endocrinologist who will take a closer look at your pituitary gland, you ...
ears1/10/2008
  Q: I was born with 2 different shaped ears, or thats what my parents told me. No one else is like this ...
  A: As long as your hearing is fine I wouldn't worry too much about it, everyone has differences in one ...
symptoms of what disease/condition1/3/2008
  Q: I am 38 year old male. Extremely fatigued, swollen underarm lymph node, itchy rash, notice I'm ...
  A: Greetings Jan, what kinds of tests have you had? Healing very slowly is a sign of anemia, so that ...
Auto-immune disease of father12/13/2007
  Q: My father is a very ill man. In the early 90's he started having severe pains in his forearms and ...
  A: Oh my, Sean, it almost sounds like he has Osteomyelitis, has anyone ever mentioned that term to ...
Auto-immune disease of father12/12/2007
  Q: My father is a very ill man. In the early 90's he started having severe pains in his forearms and ...
  A: Just another question was he ever checked for Scleroderma? I would try getting him into a very ...
mucus and cough with eating anything12/12/2007
  Q: i am 31 female, have chronic lyme disease, Postural Orthostatic Hypotension, and low blood volume ...
  A: First I would have to ask how you got diagnosed to begin with for the hypotension? Was it from ...
mucus and cough with eating anything12/9/2007
  Q: i am 31 female, have chronic lyme disease, Postural Orthostatic Hypotension, and low blood volume ...
  A: Have you ever seen an endocrinologist? They deal with various endocrine system problems and might ...
Auto-immune disease of father12/9/2007
  Q: My father is a very ill man. In the early 90's he started having severe pains in his forearms and ...
  A: I'm sorry your father is having such a rough time. The puss part was a red flag to me and I am ...
mucus and cough with eating anything12/7/2007
  Q: i am 31 female, have chronic lyme disease, Postural Orthostatic Hypotension, and low blood volume ...
  A: My first question would be have you been tested for any stomach issues such as acid reflux? And ...
What's going on?11/25/2007
  Q: Tina, For the past seven years I've had what I think is sleep paralysis. Upon waking up I feel ...
  A: Greetings, Greg. It sounds like you might have a few things going on. First off the sleep ...
Anxiety or Thyroid?11/19/2007
  Q: About 1 month ago I was sittin at home watching tv when suddenly a strong strange feeling went ...
  A: Greetings Amy, Common symptoms include anxiety, insomnia, rapid weight loss, diarrhea, high heart ...
Swollen Handa11/12/2007
  Q: My husband had a lung collapse about 2 yrs ago and ever since his hands swell up. We have gone to ...
  A: Does your husband take any pills on a daily basis other than vitamins? What tests have they done? ...
prader-willi syndrome and nose bleeds10/12/2007
  Q: My 7 year old nephew has prader-willi syndrome. His nose started bleeding last night. Today, the ...
  A: Greetings Ava To my knowledge, it's not a symptom of the prader-willi syndrome. Does he have any ...
addisons10/9/2007
  Q: what would you reccomend?..she is already taking cortisone and hydrocortisone. She sees her Dr in ...
  A: Greetings Aida, sorry to be slow to respond, got a new computer and was without internet for 2 days. ...
Tired of being sick....10/4/2007
  Q: I don't really think that this is the right category... but I could not find any others that fit. I ...
  A: With the breathing problems you have I wouldn't recommend running. If you do have asthma or an ...
rabies treatment10/4/2007
  Q: I am currently living in India. Last saturday I was biten on the back of the left leg by a stray ...
  A: Greetings Roque: Usually if you have had the rabies vaccination treatment once if you are exposed ...
Tired of being sick....10/3/2007
  Q: I don't really think that this is the right category... but I could not find any others that fit. I ...
  A: From the medications you have taken, how did you get them if you didn't go to the dr? It's not a ...
Rabies incubation questions9/27/2007
  Q: I was searching the web to answer my question regarding rabies. I was bitten by our dog when I was ...
  A: Here are a few sites to look at: www.epi.state.nc.us/epi/gcdc/manual/NCRabies.pdf ...
Fibrous Dysplasia9/26/2007
  Q: I have fibrous dysplasia in my right mandible. The tooth in that area has decayed and wanted to know ...
  A: I'm sorry you're in pain, dental and bone pain are some of the worst kinds of pain. Have you talked ...
Strange sickness shared by two friends 800 miles apart9/26/2007
  Q: First..I am posting this here because a couple people have mentioned meningitis or even ...
  A: Greetings Christian, wow, if he thought you had walking pneumonia, why didn't he give you ...
Strange sickness shared by two friends 800 miles apart9/25/2007
  Q: First..I am posting this here because a couple people have mentioned meningitis or even ...
  A: Greetings, Christian, I'm sorry you are not feeling very well. The first thing I would do is ...
myasthenia gravis9/24/2007
  Q: I am 55 years old, a Vietnam Vet, Navy, and had repeated exposure to Agent Orange in 1970 and 71. I ...
  A: Greetings Bob: Thank you for helping to protect the country. I know Vietnam was a controversial war ...
Rabies incubation questions9/24/2007
  Q: I was searching the web to answer my question regarding rabies. I was bitten by our dog when I was ...
  A: Greetings Kate, first off I have to ask you for more details. Was your dog an indoor pet? outdoor ...
meds and your name thing ..sig?9/18/2007
  Q: How do i get one of those sigs you have for your name?. its lovely and that you can click on it ...
  A: If you find a picture you like that you'd want your email connected to, send it to me and I'll make ...
Testicular pain9/9/2007
  Q: I have had persistent testicular pain for 4 weeks, although sometimes it goes away for brief periods ...
  A: So sorry to hear you have been having pain and not getting much in the ways of answers. Surgery is ...
suffer from Rabies fear8/30/2007
  Q: We here (China ) many persons suffer from Rabies fear from certain reasons. Many persons were ...
  A: Usually in the US rabies vaccines last 3 years so pets are given shots every 3 years. If the dog ...
Diabetes / Cushings8/25/2007
  Q: Does diabetes cause Cushings or does the Cushings cause diabetes? Does a doctor use a bone density ...
  A: Your question depends on your other health conditions besides diabetes. Cushings is caused from ...
lymph fluid8/23/2007
  Q: how much lymphfluid does our bodys produce in a 24 hour period if working normal
  A: the lymphatic system circulates 1.5 to 3.5 liters a day through the diaphragm, so that's why deep ...
urine infection8/22/2007
  Q: i have been told that i have a continuous urine infection . my question is . Could this be caused by ...
  A: Yes it could be from stagnant lymph fluid if you have lymphedema. Lymph is made up of water, ...
diabetes problem8/22/2007
  Q: not sure if I'm in right spot, what is the difference between eating sugary foods compared to ...
  A: the difference is sugar is refined whereas the sugar from fruits a natural sweetness sugar. What ...
Fifth disease8/21/2007
  Q: I am 18 weeks pregnant and found out that I have been in extreamly close contact with this disease ...
  A: you are right to be concerned. There is a 2-9% risk of miscarriage and the baby can be at risk for ...
wots going on?8/20/2007
  Q: the 1st GP i did see had my bloods taken as she thought my breast producing fluid could be a ...
  A: I would try to get the referral to the scan even if it's a wait, having headaches, mood swings can ...
wots going on?8/19/2007
  Q: im a 29 yr old female who suffers with headache and migraines but it had always been diagnosed as ...
  A: You need to go back to your GP or emergency room and have tests done. High blood pressure can cause ...
Rabies treatment8/17/2007
  Q: I was wondering if the Milwaukee Protocol would be attempted in adults ( I'm 59) who develop ...
  A: First off if rabies is rampant in your area, then it would be advisable to get the vaccine because ...
lab work and symptoms8/17/2007
  Q: I am a 47 year old fwemale. I recently went to a Artthritis Specialist due to joint pain and a ...
  A: I cannot diagnose but I can suggest so I would suggest that the tests indicate an inflammatory ...
Immune issue?8/17/2007
  Q: First, thank you for giving your time like this. I have a weird question (it must be weird because ...
  A: I would suggest for the new doctor to get a referral to a certified lymphedema therapist, I can help ...
Immune issue?8/16/2007
  Q: First, thank you for giving your time like this. I have a weird question (it must be weird because ...
  A: Have you discussed this with your primary why your body does not respond? It obviously is some sort ...
My father-in-law8/10/2007
  Q: My Father-in-law is 85. Within the last two years he has had a renal stint and a stint in his heart. ...
  A: Greetings Duar: Have you asked the doctor if they have done a hep C virus test? It would show high ...
body odor ruining my life8/1/2007
  Q: i am a 23 y.o female who has been suffering with a b.o issue for quite some time...and i'm so ...
  A: first off the pea sized lump, that's not normal, it could be a hemorrhoid but again it could be a ...
TRANSVERSE MYLETIS7/19/2007
  Q: I was amazed to read about Brandy her story is almost exactly what my husband went through a couple ...
  A: necrotizing myelopathy is a disorder of the spinal cord which results in paraplegia. Transverse ...
suffer from Rabies fear7/4/2007
  Q: We here (China ) many persons suffer from Rabies fear from certain reasons. Many persons were ...
  A: there is not alot you can do with wrong information on a website except tell them to change it. I ...
suffer from Rabies fear7/3/2007
  Q: We here (China ) many persons suffer from Rabies fear from certain reasons. Many persons were ...
  A: The incubation period for rabies is 5 days to 1-3 years, with 1-3 years being rare, most cases ...
suffer from Rabies fear7/2/2007
  Q: We here (China ) many persons suffer from Rabies fear from certain reasons. Many persons were ...
  A: Over in the United States many places have made it a law that pets such as dogs or cats must be ...
webbing in the throat6/30/2007
  Q: what causes web like matter to form in the throat which must be removed by laser surgery. symptoms ...
  A: I need a little more information, Noonan Syndrome is characterized by neck webbing, sunken chest ...
transverse myelitis6/29/2007
  Q: ) i have been dx with transverse myelitis since march 2007 i was in a car accident in feb 2007 ...
  A: Myelin is compromised of a fatty substance that protects nerve endings by surrounding them. When ...
transverse myelitis6/26/2007
  Q: ) i have been dx with transverse myelitis since march 2007 i was in a car accident in feb 2007 ...
  A: I'm glad the spinal tap came out good, I did see they did one but wasn't sure what they were looking ...
transverse myelitis6/26/2007
  Q: ) i have been dx with transverse myelitis since march 2007 i was in a car accident in feb 2007 ...
  A: GREETINGS, First off, did they test any of your spinal fluid? The trauma could have caused this to ...
Guinea Worm Disease6/10/2007
  Q: I have some questions regarding Guinea worm disease, and hope to find some answers here. Some web ...
  A: first off I hope you aren't infected with the disease. It is also called Dracunculiasis, and mainly ...
APS/Addison's Disease6/6/2007
  Q: I was diagnosed with antiphospholipid syndrome (Hughes' syndrome). During my third miscarriage, my ...
  A: Are you seeing an endocrinologist? Do you have primary APS or secondary, and have you been tested ...
Protein B (SP-B) Deficiency5/30/2007
  Q: Can you tell me if there is currently any treatment options, for this condition? I can only assume a ...
  A: Before I answer further, give me a little more history. Does your brother have any allergies, heart ...
what do i have5/28/2007
  Q: I have been told it's brachial plexus by one doctor, But other doctors just blow by it and say there ...
  A: you can also try Catholic Charities, they do counselling and it's a sliding scale, free most times ...
what do i have5/28/2007
  Q: I have been told it's brachial plexus by one doctor, But other doctors just blow by it and say there ...
  A: Hmm never heard of a scale before but I'd advise you to go to a counselor, psychologist because of ...
what do i have5/28/2007
  Q: I have been told it's brachial plexus by one doctor, But other doctors just blow by it and say there ...
  A: It is possible they are both damaged and it just took some time for the true extent of both areas to ...
what do i have5/28/2007
  Q: I have been told it's brachial plexus by one doctor, But other doctors just blow by it and say there ...
  A: this is out of my field, probably a neurology expert could answer better than me. I cannot ...
Harlequin babies5/12/2007
  Q: conditions/features, treatments....through your knowledge, websites, other organizations, or ...
  A: It's a very rare disorder with an incidence of 1 in 300.000 births dating back to the 1750's. These ...
fibrous dysplasia5/8/2007
  Q: My daughter has fibrous dysplasia in the sphenoid sinus and skull base. Recently there is some soft ...
  A: This is outside my field to tell you all the complications because I'm not a surgeon, but I will ...
what could happen if you are hanged up side down5/2/2007
  Q: My son was hanged up side down by some students and left alone . I was the risk heath wisw that he ...
  A: I'm really sorry that happened to him. It could have put him at risk because of the circulation ...
what could happen if you are hanged up side down5/2/2007
  Q: My son was hanged up side down by some students and left alone . I was the risk heath wisw that he ...
  A: That would depend on how long he was hung upside down, how he was hung like by his feet with tight ...
Illness or stress? Confused4/7/2007
  Q: I know tht you can't diagnose, in fact nor can my own doctors,that is the confusing thing. I had a ...
  A: I think you have a couple things going on, the hormonal imbalances are still occuring from having ...
pricking3/21/2007
  Q: Good night, doctor I don't know If I'd chosen the right specialist, but you can tell me if I didn't. ...
  A: when you say blood tests, have they just done a general one or one that shows specifics for liver ...
pricking3/20/2007
  Q: Good night, doctor I don't know If I'd chosen the right specialist, but you can tell me if I didn't. ...
  A: First off I'm not a doctor so i can't diagnose but I can give my opinion based on experience and ...
a childhood disease?3/16/2007
  Q: when she was 10 days old in 1981 my mother noticed a lump in back of her calf. she was taken to ...
  A: Yes, they can become tangled and wind up in a ball like shape. The superficial leg veins can become ...
a childhood disease?3/16/2007
  Q: when she was 10 days old in 1981 my mother noticed a lump in back of her calf. she was taken to ...
  A: this is a little outside my area, I deal with lymphatic problems not veins but I'll try to give an ...
arm sleeve3/6/2007
  Q: I am constantly tugging to keep up the compression arm sleeve. I have the extra long one, yet it is ...
  A: That is a problem alot of us have and Juzo has come out with a Juzo roll on adhesive that is kind to ...
myelodysplastic syndroms1/30/2007
  Q: For 18 months wife's platelets dropping from 25. Hit 9 a week ago.On prednisone back up to 30 but ...
  A: I'm sorry your wife isn't feeling very good. This is outside my expertise but last night I spent ...
fifths disease12/20/2006
  Q: is it also known as infantago?, i don't know if that is the correct spelling or not... sorry.
  A: This is a outside my area of expertise but fifths disease is also called erythema infectiosum. It's ...
Ill's (ill's) disease12/10/2006
  Q: I have a friend that claims to have a rare disease he calls "Ill's disease". He says it is similar ...
  A: My specialty is lymphatic and lymphedema disorders, but I do have some knowledge of hepatitis. ...

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