SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Medical Merry Go Round
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Medical Merry Go Round

I have an undiagnosed or misdiagnosed condition. I am looking for anyone with similar experiences, input, or ideas.

2006 Small left pulmonary embolism treated with coumiden, followed 10 days later by a massive pulmonary embolism with an INR of 4.0. Subsequently I was put on Lovenox due to coumiden failure.  Later that year I suffered a miscarriage.
2008 Pregnancy resulting in IUGR baby healthy but born at 3lbs. 15 oz due to placenta clotting between 8th-9th month.
2011 Switched from Lovenox to Pradaxa due to loss of insurance.
Aug 2012 "shower of mini clots to brain" put back on Lovenox.

I was initially diagnosed with Antiphospholipid Antibody Syndrome because of 2 positive Lupus Anticoagulant tests done right after my pulmonary embolisms. That diagnosis has been disputed because many subsequent tests for that have been negative. However, I do have elevated levels of the following from testing done this month.

Factor VIII level was 326% ref range below 150%
Von Willebrand Factor was 295% ref range below 150%
Von Willebrand Activity was 448% ref range below 170%

I have also had a consistently elevated WBC for 6 years ranging from 12,000-20,000 and has gone as high as 40,000 with lung infections.

My Kappa/Lambda ratio in urine was also found to be elevated within the last year. Initially started out as just the ratio, then subsequent testing showed Kappa was elevated as well. It is NOT found in my serum.
Kappa/Lambada ratio 16.84 ref rang 2.04-10.37
Kappa 79.00 ref rang 1.35-24.19

I have a history of recurring severe lung/sinus infections since childhood. I had decreased levels of IgG which resulted in a diagnosis of hypogammaglobulinanemia. That has since been disputed and many doctors now believe it was steroid induced. I also have a history of gastroparesis which comes and goes, and high blood pressure.

My symptoms include Livedo, headaches, vision issues, transient TIA episodes, severe muscle spasms that come and go, musle myalgia's, severe fatigue, discoid plaque like skin lesions (typically confined to lower legs, although have had on upper thighs, breast, and arms), and pain in my hip joints.

I have had 3 bone marrow biopsies, a kidney biopsy, and 3 skin biopsy. My last bone marrow biopsy showed a slight increase in plasma cells 7%, but not enough to diagnose mutiple myeloma. I have been tested for just about every autoimmune disease out there I think. I was scheduled for a VATS lung biopsy because my last CT showed tree-in-bud opacities, but had my mini strokes the week before so it was put on hold.  My hematologist has brought up sarcoidosis, but other than that, he has no idea.

I think my worst fear is going through yet another biopsy only to be told "I don't know". The only other disorder I can find that seems to fit is Sneddon's syndrome, but I have not had much look with doctor's here being willing to consider something rare or outside their comfort zone. My hematologist said he had never even heard of it, although he was willing to research it. I am still waiting to hear back.

So any input, info, similar experience, or ideas I would love to hear them. I am ready to get off the medical mystery merri go round.
Tags: Sneddon's, aps, Stroke, tia
6 Comments
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2012515_tn?1353879125
Welcome new Limbolander,
Sorry that you are joining us but I'm glad you found us!

It sounds as if you have been thought alot!

I can't do much on offering advice but I can lift you and these needs to the Lord in prayer and promise to pray daily for you.

We have the founder of this forum,Maria,that can offer more advice and Niko to whom is very knowledgeable. They will be along to comment soon.

Our little family here is special!

Wishing answers for you soon so you can get off this Medical Merry Go Round.

Hugs and blessings,
Tammy:)

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551343_tn?1350880995
Hi and goodness me you have been through the mill hun.

I find it exasperating that with all your symptoms they cant pin point something for you.

I would have said straight off Huges Syndrome (aNTIPHOSPHOLIPID). Why did they decide no, you even had the lupus markers?

http://www.hughes-syndrome.org/symptoms.htm

I take it you are on heparin or warferin to help stop the blood from clotting?

Huges is an auto immune disease, so i would think if you have one you might have another, which could be triggering something off.

I would look at Sarcoidosis.

I am sure you can have negative blood tests for hughes...because if you had blood clots wouldnt they have given you heparin and this would then I would think make subsequent tests negative??

Yes sneddons does fit, but so does Hughes....i think they need to go back to that diagnosis and do some more testing for it.

Either way i am really sorry you are going through such a horrendous time. xxx
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1035400_tn?1351545284
I was put on Lovenox after my pulmonary embolisms. The two tests they did for the Lupus Anticoagulants were only 3 weeks apart. They have retested me a dozen or more times since then, and the tests have all been negative. It was explained to me that you have to have two positive test that have been done more than six weeks apart to meet criteria for diagnosis.

Just before my mini strokes in August, I had an anticoagulant work up. I had been on Pradaxa rather than the Lovenox for the past year. The Lupus Anticoagulant came back negative again. Then a month later, I had the mini strokes and went back on Lovenox. That's when the Von Willebrand and Factor 8 levels were tested.  

I will have to ask about Lovenox invalidating the LA tests. I hadn't heard that before, but I know Lovenox affects results of other lab tests. Thanks for the information and your reply!
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1035400_tn?1351545284
Thanks Tammy, I appreciate that you took the time to respond to my post! And I'll take all the thoughts and prayers I can get :)
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Wow. You have really been through a lot!

Since your doctors have eliminated nearly everything else, it seems, I have to ask if you were ever evaluated for Lyme Disease? Some of what you describe are fairly common Lyme symptoms, but others are not.  However, Lyme is very insidious and if affects different people in different ways. Some symptoms are really secondary, such as muscle twitching caused by low magnesium. Lyme uses up a body's magnesium in its reproductive process.

Whenever I think I have heard or read every weird symptom associated with Lyme, I hear a new one.  Because it likes low oxygen environments, it goes for joints, connective tissue, the nerves, the brain, and various organs.  Symptoms depend on where the bacteria ended up in one's body.

There are also coinfections that can complicate the presentation and make the Lyme worse. These are other tick borne diseases that come along for the ride.

You might try Googling Lyme and a symptom.  For example,
    "Lyme disease blood clots".

When I did this search, I saw multiple message board posts of people's experiences with blood clots and even PEs while they had Lyme.  I found it helpful to read others'  stories to see if I could find descriptions that matched mine.

What is important to know is that most doctors know very little about Lyme, especially the more advanced stages and symptoms. Also, many Lyme patients test false negative on blood tests. You need a Lyme Literate Medical Doctor who knows the disease well, and can make a clinical diagnosis when appropriate. Ideally you would get tested at IGeneX, a specialty lab that does more advanced testing.  Sometimes, mainstream docs are willing to order IGeneX tests.

While you would have an unusual presentation of Lyme if you did have it, it seems worth checking out since your doctors are stumped. As my health was rapidly unravelling, I was evaluated for breathing disorders (misdiagnosed with asthma--the steroids given made me much worse by suppressing my immune system), MS, Sjogren's, cancer, and sarcoid.  One doc said she believed I had chronic fatigue. My lupus anticoagulants were negative, but some other Lyme patients report positives. I have lots of little brain lesions, but the vision tests for MS were negative.

Many blood test results can switch from positive to negative and back with Lyme, which can be confusing.  Symptoms can vary or come and go. Or they can set up house and stay.

My earliest chronic symptoms were wild hormone swings resulting in severe PMS and hemorrhagic ovarian cysts, chronic fatigue, light sensitivity, tinnitus, shortness of breath, and unexplained bouts of a sense of impending doom.  Later, the tingling, numbness, balance, cognitive, digestion, and heart problems kicked in. Doesn't exactly sound like the official descriptions of Lyme Disease being a rash and joint pain. I can't really blame the doctors who saw me early on as nothing suggested Lyme Disease. My LLMD saved my life after a dozen doctors couldn't diagnose me.

I am tired today, so I hope I haven't rambled on too much or repeated myself!

You might check out the symptom list in this doc to see how many you have. There are others that aren't on this list, but they are less common (such as strokes).

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
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1035400_tn?1351545284
Thanks for the suggestion- I have been tested for Lyme disease several times, luckily my doctor at the time was quite familiar with it. I am in KS, so it was a big possability.

I was also screened for West Nile, and my results did show I had been infected with it at some point, but the doctor that did the testing didn't think my symptoms are caused by it.  Anymore I just don't know.

I may ask about being tested for Lyme again, at this point it can't hurt any!

I am glad you found a doctor that figured things out for you, and that you continue to reach out to people!
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