SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Blood work does it point to anything
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..."

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Blood work does it point to anything

First off thanks to everyone who has shown support this week. Next today I called to find out blood work results. They said nothing has changed I had a postive ANA reading a titer of 1:80 speckled homogenous pattern. My b12 is low to normal range. I understand I have to take the B12, but does the rest mean anything. I know postive ANA could point to lupus.

What else could it be? I am gonna try to setup an appt to get the rest of the results, and see if I can get any further in this program. Thanks to some other support I have received I will be calling around to a few places to see if I can get some more help in my journey to answers. I am grateful I have found so many to lend advice, to show support, To encourage, and help when prayer is needed.

Please help me out if anyone understands blood work and their results.

May God bless ya,
Kimberly
15 Comments
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Hi Kimberly.

I just want to explore a few things for now.
First, for the benefit of all the members, I'm commenting here
instead of sending you a private message.

A positive ANA  with a titer of 1:80 is considered clinically insignificant for any diagnostic purposes. So for the time being, my advice is to leave Lupus out as a suspicion, as it is FAR from meeting  the diagnostic criteria
You may want to search here in this community, as I posted this information for Maria in the past. Just look at the right side of this page to do a search for "Lupus diagnostic criteria" and hopefully it will come up.

Your B12 to be truly effective, must be at optimum levels.
Now, if you have been supplementing orally with Cyano-Cobalamin, you need to switch fast to Melyl-Cobalamin and preferably sublingual drops..
I don't want to get into the biochemical details, but Cyano-Cobalamin is
potentially dangerous and a cheaper form to produce- just good money maker, as I see it.
You may want to "test" Magnesium deficiency, by doing  Transdermal Magnesium Oil treatments. If you are deficient you will feel better in  many ways and there's no side effects, unlike oral supplements . One major complaint  with taking Mg orally is digestive issues and laxative effects.
Magnesium oil, made from MGCl-magnesium chloride flakes and hot water 50-50. Place in plastic spray bottle when cooled down and spray all over body and rub. Leave on for 20-30 minutes and then shower. Great way to supplement and also pain relief remedy. Do daily for a few weeks to build up Mg stores, then do every other day.


One more thing that you can do on your own is Dr. Coca's Pulse Test, it's a free download, and it will indicate within a week,any reactivity, any allergies, any intolerance and sensitivity to anything ingested,
that is considered offensive by the immune system.
It is a great self-test, for the degree of accuracy, however, should you find it too difficult to do because  of your own reasons, there's a simplified version that I can send you, as second option.
Never mind; It takes just an extra minute. Here it is:
Dr. Cocoa's Pulse Test (simplified version)Just sit in a chair and come to rest for about 5 minutes. Take your pulse for a full 1 minute (not the 15 sec. multiply by 4 thing). Then put whatever you want to test in your mouth and chew it for 30 seconds. Then take your pulse again. If you find it is faster by 6 beats, you are allergic or have a sensitivity to it. If you have type “O” blood, use 4 beats as the criteria instead of 6. It’s that simple.
Keeping accurate notes of  your results is very important.
I  have referred to some notes of mine, that I may have shared with other people in the past-so I just copy and paste sometimes for convenience.)

I can go forever here. There are some suspicions, that come to mind, but first I need to know about your experience with mono. and if you don't remember many details, I think I know who does! lol!
Also any details regarding any trauma from anytime in your past, may have a significance.
Ask your mom about any traumatic events during your childhood, that you may not have stored ( or blocked from memory) in your memory.

I feel your need to get this dx, however, consider this a journey in your life
where you can be rewarded greatly, as it is  mainly a learning  and  growing experience. "
My ears are already buzzing!" What are you tallking about Niko?"
"Here I am with all my health problems and you are telling me it's a journey to grow and stuff!"
I mean no disrespect, I do understand and share into your suffering,
I have been there myself, but I  also know that when  we can  find the true meaning of our Illnesses, we have the opportunity to use this to correct
our imbalances at the physical, mental, emotional and spiritual level!

My last question is: What  major change or major event took place in your life (if any) before all your health issues started 4+ years ago?

Many Blessings!
Niko








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Just tried the search but returned no results. And  I couldn't find it.
Here's almost the same info from another post ( copy&paste)

"There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to receive a diagnosis.

They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photo-sensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflammation of the lining of the lung or heart
7. renal disorder - excessive protein in urine and/or cellular casts
8. neurological disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever (90-95%)
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds  
intolerance to cold
sore throat
lymph node swelling (50%)
and more!"

Hope this helps.
Niko

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Thanks, yeah after a couple of days of searching I read alot of info on ANA but didn't understand all of it. I tested ANA positive in the past with a higher titer. I am gonna try to get all my records together.

As for my experience with mono. Well, the most I remember was it felt like a sinus infectation to me. I had just started my job, and so I was just trying to fight through it. But in the end my grandfather pulled me out of work to go get checked. I was tested and told it was mono. I had to stay in the house for a week and I was told to be careful lifting anything over 20 lbs for a few weeks. I felt better after two days and felt in prison for the rest of that week.

4 years ago, I don't remember any great event happening. I was slightly stressed at work but that soon got better. All the doctors asked if anything was going on too. My life to be honest since about 8 yrs back when I moved in with my husband hasn't had much change up until last year. But before that same job, same house, same daily routine.

When I was younger I remember my youngest brother being taken away by his mom when i was 14. That effected me really bad back then. I had counseling for it. I was in a car accident when I was 12. My mom couldn't think of much else. I know at age 13 I got severe pain on one side it came up to be cyst on my ovaries. I went to the ER for that.

They have checked my magniesuim it was fine. They checked for many defiencies. I have always had an iron deficiency. But my birth control helps with that. My birth control also helps with the cyst on my ovaries.

Well now that my life story is out there. Lol. I just have one last thing to say over the last few days I have come to the realization that going through all this is helping me to grow. Emotionally, I am becoming stronger. Mentally, I am learning how to just let go of my stress more.

I still want some answers, but I am not as anxious for now. I thank you niko, for your support if you any more questions for me let me know.

Kimberly
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Hi hun, a high ANA titer does indicate an auto immune disorder.

I had high titers at the beginning and was told it could be lupus, and had to have another one 6 weeks later which was normal again....so no diagnosis, however my last lot of blood tests showed ANA factor again....also in the last 6 years i have had odd blood tests which could point to lupus or sjrogrens...

IF you had a high titer before then i think you are looking at an auto immune problem...not madness lol.

So i would definitely go and see a rheumatologist about this.

As a point of interest my LLMD told me that a lot of people with Lymes show high ANA titers as well....

This is a good page explains ANA very well:

http://labtestsonline.org/understanding/analytes/ana/tab/test

I would say yes you are looking at an auto immune disease ok.

I actually read the reverse that 1.80 is considered quite high and can be considered for Lupus if you have 2 within 6 weeks...you dont always have to have 11 points there are doctors who will give a preliminary diagnosis...on a wait and see.

Sometimes the ANA shows up before the disease arrives....

You are certainly on the right track...auto immune......

This is what they test for Lupus for example:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_about.aspx?articleid=2242&zoneid=2

Really i could be diangosed with lupus if i pushed it, as now i have CNS, kidneys (really bad bladder infections constantly), and now skin, as i have been having lesions on a flare up..(thought to be lymes but who knows)

My dad had Lupus, and to be honest i have more symptoms now then he did when he started...

Dont give up hun...the ANA shows inflammation it could even be your cysts perhaps...have you had thyroid tests...

Hugs...maria
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Thanks Maria,

Well I have had thyroid test. They said it was fine. In the past I was seen by a nuero for about a five min visit, and then told it was nuero. Last time around they also did same blood work and results were the same.

I saw my doctor today. I asked about my blood work but she said this was a bit higher but wasn't nothing to worry about. She has ordered another X-ray and wants to continue to pursue getting on with a nuero. She said she doesn't want to over due testing at this time, cuase she scared it could stress out my body.

As for whether it is an autoimmune disorder she really just kept saying a possibility. I had to ask what to do about my wrist swelling, and the pain. I was told to take Ibprophen, and to use a splint.

But yes I am not mad lol. I am hoping for some answers after the MRI.

May god bless you
Kimberly
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Hi Kimberly.

What happened to cause your wrist to swell?
I broke mine last year- cycling accident- used a splint,
icing, daily self-hypnosis and reiki . In a 3 weeks it was fine.



I promise I will keep things very simple.
Many people in this forum suffer from information overload,
often missing or not considering potentially VERY IMPORTANT
&VITAL information.

1. Tissue magnesium levels are the ones you should know if they're low.
NOT the blood magnesium levels, as there's a mechanism that controls
the magnesium in the blood. Doctor's don't routinely check the tissue levels
and that is why a phenomenal 75% + of the population is magnesium
deficient!!! Magnesium is involved in over 300 processes in the body!
For example, If you consume simple carbs and sugars, for each one molecule of glucose from them in your body, 56 molecules of magnesium are needed to properly metabolise the glucose. Otherwise an inflammatory
process starts and over time it progresses to full blown disease!
And this is just one of the 300+ areas of magnesium involvement.
(I'm oversimplifying it for practical purposes and convenience as this is not meant to be a lesson in biochemistry-lol!)

2. Cyanocobalalmin as a B12 supplement and potassium.
Potassium in the body can react with the cyanide found in cyanocobalamin – the cheap type of B12” – and form toxic potassium cyanide (KCN).
Switch to Methyl-cobalamin-sublingual!!!

3. "birth control helps with your iron deficiency" How's that?
Many of your symptoms are consistent with iron deficiency.
Do you know the cause of your iron deficiency?

4. Your mononucleosis was caused by EBV (likely) or CMV (less likely).
The EBV stays dormant in the body for life after an infection
  A past mononucleosis infection may predispose you to Auto-Immune type of disease. However other causative  factors have to be present.
Stress (among other things) and a weakened immune system (these 2 go hand -in hand) can trigger a mono infection. Fast forward : The same two
factors can trigger a pathogenic infection or an Auto-Immune type of disease such as CFS, FMS, Arthritis, Psoriasis, MS, etc., as a long term
effect of dormant mononucleosis.

5. Candida. You can do a preliminary test on your own.
Just do a search for "Saliva test for Candida" on YouTube. Very easy and fast. or let me know if you need details.

6. Cysts are often caused by painful memories, or by a disruption of energy flow caused by emotional trauma.
Other physical issues could be attributed to energetic imbalances and blockages.
To correct this, Hypnotherapy, Professional EFT or Energy Psychotherapy
is what I recommend.
This is a field that I know very well professionally.
I'm a board certified Hypnotherapist and an  EFT Advanced Practitioner.
I'm not mentioning  this to brag, nor to score any points for myself, as I don't believe in such things.
My intention is just to add some credibility to the connections I make.

Kimberly, I hope I'm not tiring you with all my comments and questions,
but would you be kind to answer #3, and consider ruling out
#1 and #5.
Also the "Pulse test" long or short version-as I mentioned in a previous post- is very vital to rule out Allergies, Intolerance or Sensitivities to anything ingested.
Gluten intolerance is another possible "Auto-immune" response as a long time effect of a dormant mononucleosis,also to be ruled out by this test
(95% accurate-full version, when done right).

Please take your time to read and understand all this, and if you have any questions at all don't hesitate to pm me, or post again.

Many Blessings.
Niko

PS
Did you have a chance to checkout the "Course in Miracles" online?
Wow. I just had an AHA moment!
Think of me as a hired Health Coach and Imagine that you're paying me
let's say $10000.00 a year for unlimited consultations. Sounds good to you? How do you feel this could help you?
This is a trick question and has very little to do with money.
Any thoughts?

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Hi hun i get the pain in my right wrist too and odd swellings, espcially around my feet, and ankle and front of shin.

MS is classed as an auto immune disorder.

You still need to see the neuro definitely as stuff like Lupus and lymes etc can affect the CNS.

I think your doctor is dealing with this sensibly and at least trying to get you answers.

It is a long journey hun, but we all hopefully get there in the end lol. xxx
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Just wanted to answer those questions I will read you post more in detail later. On the first question I think I am gone hold off on that test. My primary said instead of overwhelming my body with test and stressing it out. She wants to do one test at a time.

I feel confident that she is will look into everything. I am gonna try to do that as soon as I get a chance. All your tips seem to be helpful.

Now the #3, well the birth control I am on has iron in it. Even the last week is straight iron capsules. So since I started taking them anemia has been an issue.

Well thanks agian I will read the post closer soon.
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Hi, I just wanted to let you know I am grateful for your support. More then one person has said that it could be lymes. But yeah I am happy with my primary alot of what she said makes since. I am praying for a neuro who will be charitable.

Thanks for your kindness.

Kimberly
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Hey Kimberly.

I was holding off with my one of my suspicions, Lyme Disease, as it is probably not the most difficult to get diagnosed, it is the most difficult
disease to get diagnosed  ACCURATELY!
But since it has been suggested to you already, it's now in the open.

Your doctor as nice as she seems to be, is likely either NOT knowledgeable enough or NOT "willing" to give you proper advice for testing, diagnosis and treatment of Lyme Disease. There's huge controversy in regards to Lyme Disease testing and treatment, mainly due to the
medical establishment's narrow views on this disease and a lot of denial.
Most doctors, unfortunately, use CDC guidelines, which were put in place
mainly for reporting and statistical purposes!
The Infectious Disease Society of America is the governing body that dictates the highly controversial diagnostic and treatment protocol for Lyme
Disease.
The only sensible option that sufferers have, is to hook up with a Lyme Literate Medical Doctor (LLMD), and get the tests done through IGeneX Labs, the ONLY reliable Labs that will return accurate results most of the time.
Anything else is not only a waste of time, it is a potential "medical" sentence.
A misdiagnosis of a person who actually has Lyme Disease, means that this person may NEVER get better! And this is a tragic event taking place in our society all the time.

Trust in You Divine Inner Wisdom to seek the Truth.
Become more Proactive, deepen your knowledge and take charge of your own health matters, as you  deserve to experience better health and wellness.


And as far as my suggestions for testing for deficiencies, I did offer you some totally 100% non-invasive options, for most of them.
Your primary was probably referring to invasive medical testing and more blood tests, I guess.
For the tissue magnesium, I would do the transdermal magnesium oil treatment, as a test, since it is very safe. It's too big of factor to overlook.

Forgive me if I come across too strong perhaps at times, but I do mean well. As Maria said it's a long journey, but I "see" the short cuts to the answers and pray that you allow yourself to "see" those answers as well!

                   My meditation today is:
"Source Nourishes and Protects Me,
Offers me Health when I'm Ill and Shelters Me from All Storms of Life.
When I Shift My Awareness to Source, I Know that I'm Forever Safe."


May All the People on the Atlantic Coast and Inland be safe from the effects of Hurricane Sandy.
My thoughts and prayers go to them, as well as to you.

Many Blessings.
Niko

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Nico,

I am grateful for all the advice you offer. I am also grateful for the prayer for the coast line my aunt lives on Long Island.

I have started to ask more questions and I have asked the ones that hit me as vital. It's kind of messed up but this flare up of my sxs is starting to fade away. Which means where my wrist swells isn't as noticeable. But I am grateful the pain is gone for now. Today I am gonna try to find out what test they ran in the past.

I know it was many blood test. I didn't get to take a look at the results myself. So, I am gonna see if I can get copies. My primary, I believe is wanting to see and understand what all my nuero did too. She is trying to help as much as possible til I can get a nuero.

I just want to see what was truly ruled out in the past before I ask for the same test. I may check into the magniesuim though. But then I would want to know why my body has so many defiencies. I have always had an iron one but I started taking iron and now my birth control. I have a slight b12 defiency from what my nuero said. So I take b12 now. This all had made me wonder about my digestive system. It's just crazy.

I also am going to read up more on lymes. The other sxs that hasn't fully faded is the swelling I stil have a slight puffy area right above my wrist. Thanks agian for your suggestions and support.

Kimberly
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Hi I am new here to this forum as well, due to some diagnosis my husband has received in the past two years as well as a "new" diagnosis he received in the last month. I have read through many comments and it all seems to be so familiar with all the symptoms and issues my husband dealt with for the last 10 years and the challenge in getting answers. He is 57. He was finally diagnosed with Hep C 1a, which he has likely had for 30 years. Then in the process of doing all the follow-up in preparation for liver biopsy the internist also discovered HHC, which is Hereditary Hemochromatosis. The HFE gene responsible for iron storage in the body gets mutated and as a result instead of excreting excess iron the body stores it. This stored iron affects joints, muscles, tissues, and organs. People with HHC often begin presenting to docs with symptoms of arthritis, especially in hands, wrists, knees, also accompanied by body and muscle pain that comes and goes within days or weeks, chronic fatigue, with all symptoms geting worse over time. Docs take repeated blood tests, all the routine blood work CBC's etc. and often find so-called anemia or iron deficiency and prescribe iron supplements or in extreme cases even blood transfusion therapy, and this makes the problem worse! You CAN be anemic AND iron load at the same time!!

Iron loads on liver and heart first causing cirrhosis, liver cancer, elevated liver enzymes that can't be explained by anything else, and from there it loads equally onto heart which causes heart palpitations, heart arythmias, congestive heart failure, stroke, enlarged heart...iron loads onto pituitary gland with many people with HHC also being concurrently diagnosed with hypothyroidism, hypogonadism and loss of libido for men, and menstruation problems for women,...iron loads onto brain causing mental fog, confusion, early signs of dementia or Alzheimers, memory loss...iron loads onto pancreas and those with HHC are also diagnosed with diabetes type 2...iron loads onto gallbaldder and spleen causing enlargements and gallbladder disease, stones...iron causes renal failure, calcium deposits in body lead to increased risk of kidney and gallstones...iron deposits in joints causing arthritis, often diagnosed as osteo-arthritis and hip replacements are the two most common joint replacements in people with HHC, or fibromyalgia is diagnosed in patients that present with all these connective tissue problems, inflammation and auto-immune symptoms.

Alternative diagnoses consist of osteo-arthritis, fibromyalgia, heart failure, diabetes, liver cirrhosis, liver cancer, IBS, mental fog/confusion/memory loss, hypothyroidism (Hashimoto's as well).

There are so many side effects of iron storage but the root cause of all these problems stem back to systemic illness. It is well worth looking into and at least ruling it out...it is the most common genetic disorder in N America found predominantly in people of Northern European descent, it is so prevalent that 1 in 9 people are carriers for the gene mutation which is passed on through parents to their children and 1 in 200/250 people will develop iron overload as a result. Docs are missing early detection of this preventable and treatable disease. A simple blood test will determine how your body is storing iron, not just the iron test you get on your standard blood test. Your doc will tell you they "checked" your iron, this is different.

Google this, you'll be amazed, more so at the lack of education and awareness of this common genetic condition that affects so many. My husband's father died of congestive heart failure, and had so many other health issues that now we can go back and say obviously his Dad had this disease. He was Irish. 1 in 4 people from Ireland have this disease and they beleive that is where this came from so check your family history.

I know this is a lot, I see others have posted many great suggestions on what types of things to be aware of or tests to try and results to flag. Some docs aren't happy to accomodate new ideas, but insist on this one...it takes an average of 10 years and 3 docs before most people are diagnosed, and in the meantime damage is being done that is irreversible.

I hope that some may benefit from this info, sorry to write a book, but it has been found out that I also have high iron saturation, and in premenopausal women, a transferrin staturation level of over 35% is toooooo much and indicates an iron storage issue. Mine is 58%. My husbands was 61% intially then it went to 71% with ferritin at 863 and this needs to be less than 100 for him because of Hep C as well. Men should be no more than 50% TSAT, (transferrin saturation) which is on the high side and is a red flag. 35% is the high side for women before they need to investigate further.

Anyway, more to come for us as we are early on in the diagnosis and treatment plan so we have much to discover for both of us.

Take care all.
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Thank you so much for the suggestion. This is a new one that I haven't heard of but I will have to look it up. Every suggestion is worth looking into and going over. Each leads me one step closer to answers.

As for your journey, I will be praying for you. I know the dxs process is a struggle of its own for most of these diseases. Then treatment can be even harder. I know God will be with ya. Please, if I can help with anything let me know.

May God bless you and your husband,
Kimberly
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Hi there, don't know if you've had a chance to look anything up but the iron/MS connection, among many other connections to common illnesses and disease and conditions and cancers, are explained very well and easy to understand at irondisorders.org.

Excellent site...and hope you find some peace soon.
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Thanks for checking in. I have looked it up a bit, but I am not sure. I also have been looking into lymes more. I will still check out the webpage you have above.

As for my journey today I got results back from MRI. No changes were found this means most likely not ms. Which is a relief but also means I am still in search of answers. As I said all suggestions I have been researching. I feel the more I know the more relaxed I will be when I get a dxs.

I hope you are doing well. I pray The Lord has been answering your prayers. If you need anything just pm me.

Kimberly
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