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Frustrated and still undiagnosed 4 years

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Old 09-05-2006, 08:07 AM   #1
Join Date: Sep 2006
Location: New Jersey
Posts: 4
Dawn1122 HB User
Frustrated and still undiagnosed 4 years

I've reached an impass again and don't know where to turn. Here is what has been found:

4 years ago I started having AFIB. During the night, during the day. It took 4 episodes to finally have someone believe me. It would always stop before I could get even to the ER. The worst event was 4 hours long.

All cardiac issues have been ruled out, have had stress tests, MRIs, CTs, xrays, even a cardiacath. Enlarged pulmonary artery, mild pulmonary hypertension. Diagnosis Lone Atrial Fibrilliation.

Treated first with Amiodorone <--- horrible bradycardia , med stopped 2 days in ICU.

Second med was Rythmol <---worked good for 2 years, didn't do anything for the other symptoms, started having breakthrough events switched to Rythmol SR in July of this year. Bradycardia, Afib events frequent. EP is now going to start Tikosyn.

Prior to the AFIB I have chronic low BP, generally 95/55.
Low blood sugar 68-70 even after meals.

Numbness and tingling in the limbs. Not all at once, not all the time, but at least every other day, several times during that day.

Nausea often accompanies these events, almost fainting, similar to a vertigo effect. Doctor writes a script for Meclizine. Helps some, still having breakthrough events.

Resistent to coumadin, to keep my INR at 2.6 or highter (therapeutic for AFIB patients) it's necessary for me to take 15 mg a day.

Tired all the time, no sleep apnea detected.

Joint pain and weakness.

Buzzing or vibrating sensation in left lower leg.

If anyone, ANYONE...has any idea where I should turn next, I'd be so greatful.

It's been 4 years, I'm frustrated and sometimes just cry because it's starting to effect my quality of life, not knowing, is even worse.

I'm a 40 yr old female.
Smoker (pack a day)
Sit down job
3 Children

I'll answer whatever questions I can.

Thank you for reading my post.

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Old 09-05-2006, 02:02 PM   #2
Senior Veteran
Join Date: Jan 2002
Posts: 5,799
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Frustrated and still undiagnosed 4 years

Hi Dawn. I am sorry you have been dealing with so much. I know it is frustrating trying to find answers.

I have a couple of suggestions. First have you had your thyroid checked? Ask that they run the Free T3, Free T4, and thyroid antibody tests in addition to the panel (T3, T4, TSH). These tests are not usually done but are necessary for a comprehensive view.

Second, do you think you may have Lyme disease? NJ has a very high rate. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrelated symptoms, and it can be difficult to get diagnosed. Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you would like a doctor recommendation, let me know. There are a couple of excellent ones in NJ.

Do not give up. You will find out what is wrong.

Old 09-05-2006, 05:08 PM   #3
Join Date: Sep 2006
Location: New Jersey
Posts: 4
Dawn1122 HB User
Re: Frustrated and still undiagnosed 4 years

Thank you for your response ticker.

At one point the thyroid came back slightly elevated. A blood test last week revealed an elevated hemostatin (thicker blood).

Oddly enough, last year my Husband during a routine visit with his doctor tested positive for Lyme. We were sent to a specialist, for a special test that returned negative.

I have another doctor's appointment tomorrow. I have to go several times a week to make sure my INR is stable, since I'm having so many rythym difficulties right now.

Many times throughout the day, the fainting feeling is becoming increasing worse. Have you ever driven over a deep dip in a road and felt that sinking feeling coming off the other side? Similar to a rollercoaster? That's exactly what it feels like. This is sometimes preceeded by sharp, almost electrical sensations in my chest cavity. Sometimes the left, sometimes the right. But I have noticed after one of those episodes, is when I feel the "vibration" in my lower left leg.

Reading what I'm writing, I'm almost laughing out loud thinking what a nut case I'm starting to sound like.

I don't have any valve problems.

My oldest son, won't get tested for Marfan's, but exhibits nearly every single symptom. Diagnosed with heart problems at the age of 9, he's very tall and horribly thin, even got a personal trainer at one point to try to thicken him up a bit and it didn't work. He has next to no body fat. He has extremely long fingers and toes, a concave chest, and we found out just a couple months ago he has scoliosis, as well as a missing vertebrea (sp?) in his spine.

I've had one umbilical hernia, as did my grandfather. My father has 3 aneurysms. One was in his aorta that was repaired about 3 years ago at the age of 60 and he has one in each leg.

I've had 100% seperations of my knee and shoulder at different times, doing every day activity, lifting my arm too quickly in one case, and turning just the wrong way on my leg once.

Much of what I've googled as to my own symptoms, leads to me to some type of tissue connectivity syndrome, perhaps not specifically Marfan's.

I've talked to my EP (electrophysiologist) about these issues, and he thinks I'm on to something. My GP, as much as I like him, hasn't been concerned with finding the cause, as much as treating my symptoms. My EP would like me to change my GP because he doesn't feel confident that the team approach is really being used. My GP won't call my EP directly, but will make me copies of the necessary paperwork (i.e. test results, halter monitor, blook work, and frequent EKG strips).

I'm going to push a little harder tomorrow.

I was hospitalized for 4 days at the end August with severe bradycardia, so I'm out of work for a couple weeks to get my heart meds changed. The Tikosyn requires a 3 day hospital stay to begin as it has to be closely monitored.

It's frustating. I get dangerously close to drawing a line in the sand and let whatever happens happen.

I will definately check with the GP tomorrow in regards to running some other tests, including Lyme and thyroid.

Thank you... any and all suggestions are welcome at this point.

Old 09-07-2006, 06:18 PM   #4
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Posts: 5,799
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Frustrated and still undiagnosed 4 years

Hi Dawn. I do not think you are crazy. I know how frustrating it is when something is wrong and you cannot find out what it is.

Never give up. You deserve to feel better. If one doctor cannot help, try another one. It is their job to help us find out what is wrong.

How did your appointment go?

Does your husband have symptoms? No Lyme test is completely reliable, and results can vary by lab. Many people who have Lyme test negative. The fact that he tested positive is significant. The first test that most doctors run show infections in only about 30% of cases. Even the CDC who is behind the times on Lyme says a negative test does not rule out Lyme. Yet the majority of doctors who test for Lyme say you absolutely do not have it if the test is negative. But if the test is positive, they will tell you it is a false positive!

If this may be a possibility for you or your husband, it is very important to see a Lyme knowledgeable doctor and be tested at a Lyme lab such as IgeneX in Palo Alto, CA.

Hang in there okay?

Old 09-18-2006, 10:55 AM   #5
Join Date: Sep 2006
Location: New Jersey
Posts: 4
Dawn1122 HB User
Unhappy Re: Frustrated and still undiagnosed 4 years

Just discharged after the initial Tikosyn start up.

Things just getting more confusing as we move along.

The bradycardia I've been experiencing is not from the says my EP.

I'm having slow QT in every single EKG they ran (approx. 8 EKGs run).

There is nothing wrong with my heart, with the exception of the rythym factors...either AFIB or Brady.

My potassium was signficantly low during my hospital stay, so they started oral administration, pretty gross drink.

Now EP wants to give ablation a shot.

He said he's positive the afib and brady are all part of the same issue, possibly sick sinus syndrome.

If I had a choice, I'd choose AFIB over the Brady events...the near fainting scares the bejesus out of me, and I never know when it's going to hit...but it hits far more often over the last couple of months than ever before.

Still finding out nothing...quickly.

Old 09-21-2006, 02:05 PM   #6
Join Date: Sep 2006
Location: Maryland
Posts: 9
gerkitt HB User
Re: Frustrated and still undiagnosed 4 years

Hi. My name is Jessica and I have Ehlers Danlos Syndrome. I saw your post and thought I should respond. Ehlers Danlos Syndrome(EDS) is a connective tissue dissorder similar to Marfans. I too disslocate my shoulder and knee with normal movement. I thought I should respond to give you this info-but not to scare you. EDS is not life threatening. Many symptoms "cross-over" from the 6 different types of EDS, as well as a new "marfan EDS". The first and foremost symtom is loose joints. I am super flexable, but didnt know it untill I was diagnosed. Also, the sensations you are experiencing could be explained by EDS. I am not a doctor, but I do know that EDS is under diaged and not known well by most docs. There are some simple tests to evaluate EDS. If you do a search on it you will find the Brighton scale(sp). This is the first test to diag EDS. All of it is baisicaly hyper-extention of the joints-which it seems you may have. I hope this helps. Good luck.

Last edited by moderator2; 09-21-2006 at 03:51 PM. Reason: posted contact info

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