SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
New here and wondering...
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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New here and wondering...

Hello everyone, and I apologize if this has been covered in other posts, but I haven't read through all of them. What interested me in this group was the "limbo" state that many find themselves, and which my husband found himself for approx 12 years...until recently. He is 57. After many years of tests and dr.s and no answers, finally, finally, they diagnosed him with Hep C. Although our family dr. did not tell us about it, a fill-in dr. told him when he went to get some test results for blood tests for insurance purposes and it came back his liver enzymes were elevated. That is a flag right there, but after 8 weeks and getting retested, no alcohol at all (not a heavy drinker, but occasional) and the results were the same, and the fill-in dr. told him his enzymes still elevated and by the way you have Hep C, and it's been on your file for TWO years!! That was more of a shock than finding out about the HCV. So, now a couple years down the road, and internist has recently diagnosed the genotype, having Hep C 1a. And, by the way, we also found out you have hereditary hemochromatosis. WHAT is that? Since birth you have been storing iron in your body, and it is genetic, so you need to tell your siblings to get tested. Holy moly. So we come home and so some research, and talk about a lightbulb moment. Here we thought that all the symptoms he'd been having for all these years were related to HCV, which they are, but, adding to that diagnosis is the HHC (hereditary hemochromatosis). We found out that it is the most rarely diagnosed common genetic disorder in North America, affecting people predominantly Northern European, Irish, Scottish, English, Welsh...well, he's all that, his Dad Irish, mom Welsh/English. Anyway, the symptoms he presented to the dr office with were all arthritic in nature, arms, muscles, joint pain, fatigue, exhaustion, shoulder pain...these got worse and worse over time. Dr. missed all of this and the blood tests to catch iron overload are simple but NOT routine. A dr. can look and see that iron looks low and say you are anemic, and yet you are actually iron loading!! Iron gets stored in liver first, and causes cirrhosis, cancer, (people who never or rarely drink and are told they have cirrhosis, dr.s tell them they are closet alcoholics) loads into the heart and causes congestive heart failure, irregular heartbeat, enlarged heart, myocardial infarction, stores into brain and onto pituitary gland and causes low libido, hypogonadism, and infertility in women, iron stores on the pancreas and causes diabetes, iron stores in the joints and muscles and causes arthritis, (people with "unexplained" pain and neuropathy are told they have fibromyalgia and osteo arthritis) and I cannot tell you all the other insidious damage this disease causes. I have been amazed by the amount of things my husband has that are linked back to HHC somehow. He also has a rare eye condition that is causing blindness called ideopathic juxstofoveal taliangeactasis, hemorraghing in the retina. So he's in pretty bad shape. His recent liver biopsy showed stage 2 fibrosis with grade 3 inflammation, etc. which is periportal fibrosis, and leads to further damage of liver due to portal veins being squeezed off and blood flow backs up, toxins enter blood, blood vessels rupture and cause easophageal (sp) bleeding ANYWAY...the reason I go into all the details is that if any of you here that are in "Limbo-Land" as you call it and drs are having a hard time figuring you out, ask them about HHC. It is a simple blood test, and you'll see if you are storing iron. Early detection is the KEY to preventing damage to organs. A simple method of taking out the iron is taking out the blood, so my husband now gets a weekly phlebotomy where they take a pint of blood. They have to get the iron levels down before they can treat the HCV. Wow, it's a mountain, and I'm tired, never mind him. Hard to keep it all straight. Look up hemochromatosis if you have any other questions. Anything unexplained...pain, elevated liver enzymes, arthritic pain, diabetes, liver disease, heart problems, worth looking into just to rule it out. Even the fibromyalgia site has a page on this disease, stating the there are many now that have been told they have fibromyalgia that are finding out they have hemochromatosis. The results you will need from your dr are the ferritin, transferrin, TIBC, and the iron saturation %. Check ALT and AST and GGT all to do with liver enzymes. Just sorry for the lengthy diatribe...I feel like I want to shout it from the roof tops.  ****  1 in 9 people are carriers and 1 in 250/300 will develop hemochromatosis. It affects women later because of monthly periods, but shows up 5 or 6 years after menopause and men show up with it after their symptoms are more severe usually in early to mid 50's. But it can affect you younger, it's just not detected or tested for and it's not part of dr routine. IT SHOULD BE!! Don't let them poo-poo it, either.

Just spreading the gospel. Hope this wasn't too long and people don't want to read it and miss out on an opportunity to find out about unexplained illness.

Good health to all, Cheers
7 Comments
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This was very interesting. So I just wanted to say I am gonna research this disorder. Many of the sxs sound like mine. I am a mix of almost everything lol. So it still could be somewhere in my genetic background.

For future refrence, some of has have trouble reading kind extended post. Therefore if you break it up into smaller passages as I am doing in this one... Then more people will focus and get the vital details that you have provided.

I really do appreciate the suggestion. I will be praying for you.

May god bless you and your husband,
Kimbrrly
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Hi, and thx for the suggestion on how to post my comments...quite often I don't intend on writing so much and then the fingers get going and it all spills out!!!! In other posts or communities and forums I have used htat method and I agree it works better. Sorry about it all, but for those that can take the time to read it as yourself I hope it can help at least some get some answers that we ourselves were searching for all these years.

Thanks for your well wishes and thoughts. I have many links and good articles and studies already saved and bookmarked which include lastest info and optimal numbers for lab tests, and types of tests to request from doc.

Take care...
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Thank you for your post!  I vaguely knew about hemochromatosis, but I had no idea what symptoms it could cause or how much damage it could do.  (I have the opposite in my family - anemia.) Most of the symptoms are similar to Lyme Disease, which is what I have.  (However, I had neurologic Lyme and didn't experience joint or muscle pain.). I guess hemochromatosis is another one of the many conditions that Lyme mimics.

1 in 250/300 people means it isn't rare at all. I wonder how many people are walking around undiagnosed?

It is appalling that your husband's doctor failed to communicate the Hep C results for TWO YEARS!  That is inexcusable.  At the very least, you should file a complaint against him with the medical board in your state.  I am glad your husband got correctly diagnosed. I hope the treatment helps improve his health.
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4173379_tn?1355360151
Thanks...just a note...a person can be anemic AND iron load at the same time, so further iron tests are needed to truly know the iron picture in your body. Regular blood tests do not show iron storage, and suggest anemia, however, it is a good idea to rule iron overload out as well.

Cheers...
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4173379_tn?1355360151
And yes, there are many walking around not knowing and not being diagnosed or being misdiagnosed as the symptoms are similiar to other diseases, conditions...I would not have known I was storing iron until much later in life if my husband had not found out and I was tested, we have two small children and they are both obligate carriers from him of at least one mutation, so if I am a carrier as well, their chances of getting complications from iron overload are much greater. Now I have to get the ball rolling on my own situation. Much liver and diabetes and heart attack and stroke in my family history on both mother and father side, so I need to get to bottom of this.

Cheers.
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Thank you for the info.  I had no idea a person could be anemic and be storing too much iron at the same time!  I will definitely mention this to my Mom. We are in the ethnic risk group.

Maybe some of the Lyme patients who have lingering symptoms after antibiotics are one of the undiagnosed hemochromatosis sufferers. There is a lot of overlap in symptoms.  It seems that iron storage testing should be routine for people with these fairly common symptoms of joint and muscle pain.

Was it a hematologist, a rheumatologist, or other specialist who finally diagnosed your husband?  I am curious as to what kind of doctor understands this condition.
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It ended up being an internist, who was investigating his Hep C...interesting enough, Hep C is and can be common in people with HHC, because the iron overload leads to immune system compromise which means your body does not as effectively fight off infection and viruses, like Hep C. And the extra iron also complicates treatment.

Lyme is one of those immune issues, and is so difficult to diagnose, and yes, the evidence suggests that iron should be checked for in anything to do with neurological disorders, the symptoms are so similar, but having an underlying condition such as iron overload in the first place leaves a person vulnerable to other infections and viruses.

Fantastic research and new breakthroughs on relationship on iron and MS, Parkinson's and Alzheimer's...so much to learn about how iron affects our brain, but it most definitely does cause neurological disorder, even changing DNA...

Lack of awareness and understanding in general GP community, even among specialists is staggering. Good for us as patients to be well informed. We learned this the hard way, I guess. But how do you know where to look? So that's why I make it a point to pass it on to anyone who wants to look into it further...we "end up with" so many common ailments that who knows the reason we had them in the first place!
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