SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
its been awhile
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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its been awhile

I am still in this hell called limbo. My neuro and pcp keep testing for everything but my pcp can only do so much and my neuro is testing but it takes forever cause its like i see her get a test and dont see her for another 1-3 months. I have had a mri of head and back all normal, blood tests all normal (vit d was only 25 waiting on pcp to call me back about what he wants to do about that), emg normal, VEP borderline, and a spinal tap which the results i just got all seem normal. I am still waiting on my MS panel, lyme disease (checking once again), and a few others that were ordered the same time spinal tap was done. My symptoms are only getting worse as the days get hotter, i cant keep up with house work, yard work or much of anything cause it exhausts me so much and i hurt so bad. my stamina has decreased from less than a year ago dramatically. They have been looking at MG, CIDP, and MS. No one in my family seems to get just how bad i hurt, am tired, and if i over do it that it can take days to recoup from doing to much. ALL I WANT IS SOME ANSWERS WHY DOES IT TAKE SO LONG? Sorry about yelling I am just so fed up with all this waiting I just want to know what is wrong with me so we can figure out what to do. UGH
7 Comments
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163240_tn?1337907961
this is my spinal tap results they look normal to me they were posted online

Protein CSF 31
Glucose CSF 60
Tube Number 3
Gross Appearance Clear
Supernatant Colorless
RED BLOOD CELLS 39 /cu mm
White Blood Cells 0 /cumm
Diff Comments No immature cells seen on slide scan.
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551343_tn?1350880995
Hi i feel your frustration its 6 years for me this year.

The one thing that comes out screaming is the low Vit D 25 is low. This would normally indicate some sort of auto immune problem going on........however, a low Vit D like that can make you poopy.

I would check your diet and eat more stuff that contains it, and also if you can silly isnt it the thing that makes you feel bad is the sun, but try and get some rays on your skin for at least 20 minutes a day.

I went gluten free, this did help my fatigue. I also follow the MS recovery diet to a certain extent and this has helped me with the burning in my right leg too.

People dont get it. They look at you and think hey you look well but inside you feel like shouting believe me.

I tell you what i have started drinking Almond milk, and do feel a tiny bit better as in i do have a bit more energy. Its high in good vits. It also has magnesium which is really needed and good for you.

Nutritional Value of Almond Milk

Almond milk is one of the most nutritious milk substitutes available. It doesn't contain saturated fats or cholesterol, but it does contain omega-3 fatty acids, so it's very good for your heart. Almond milk is high in protein; the typical eight ounce serving of almond milk contains about one gram of protein. One serving of almond milk also contains about one gram of dietary fiber.

Almond milk is very low in calories; it contains only about 40 calories per serving, and it's low in carbs at only two grams per serving. Almond milk contains about three grams of fat per eight ounce serving, making its fat content equivalent to that of rice milk.

Almonds are rich in vitamins and minerals, so almond milk doesn't need to be fortified. Almonds contain vitamin E, manganese, selenium, magnesium, potassium, zinc, iron, fiber, phosphorous and calcium. The flavonoids in almond milk help prevent cancer and slow the signs of aging. The high levels of antioxidant vitamin E found in almond milk make it very effective in the prevention of cancer.

Because almond milk is low in fat and calories, and high in many essential vitamins and minerals, it is a great milk substitute for those who would like to lose weight.

Vitamin E benefits

Vitamin E and vitamin E oil benefits are focused on promoting health ranges from a number of health benefits that benefit both men and women alike. These benefits involve the vitamin’s antioxidant properties, and its roles in preventing inflammation, preventing the clumping off platelets and strengthening of the immune system. These benefits are seen in the involvement of Vitamin E in the prevention and treatment of heart diseases, cancer, eye conditions, mental or cognitive deterioration and skin problems like acne and scars.

SORRY this is a bit rushed but got to get up early this morning.

Try to keep calm and positive. Concentrate on your health yourself and do the research as to how you can improve your vit D deficiency and what it can do to you ok.

Will catch you again later. xxxxx Maria
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163240_tn?1337907961
i get plenty of sunlight multiple hours a day of it really. And i eat and drink lots of things fortified with vit d that is why it is a shocker to me to see my levels low
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163240_tn?1337907961
sorry forgot to say thank you its very late here and once again i cant sleep.
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4173379_tn?1355360151
Just a quick question about whether in all the tests your dr has done he/she have mentioned or done any testing for common genetic condition called hereditary hemochromatosis. My husband was just diagnosed, by accident I might say relating to his Hep C diagnosis. The blood tests are simple but NOT routine on your drs list of CBC's or other rounds of tests. Worth checking out. Google has infinite amount of information, and your exhaustion symptoms among others you mention remind me of the diagnosis limbo my husband went through for 10+ years before finding out. Early detection is key. Get back to me if you or any others have further questions. I have become very informed about this disorder that causes iron overload and many systemic conditions relating to it.

Good health, cheers
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Avatar_m_tn
Hi,

Sometime neurologists are chicken.  They only care about their rep.  You health is secondary unfortunately.  But, also you have had normal diagnostic studies.  Although, MRI can pick up most enhancing lesions.  It is still incapable of picking up many ms small lesions.  And, that could be were you are now.  The other thing is according to my doc MS is a difficult disease to diagnose.  
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4173379_tn?1355360151
On irondisorders.org they have info regarding the realtionship of iron in diseases such as MS...the Italian doctor that has began vein treatment therapy in the neck for MS patients has cured his wife of MS through iron depletion. It is very interesting reading, the iron in our body in slightly elevated amounts is a toxic soup doing silent damage to brain, liver, heart, pancreas, joints, tissues, and everything else.

Regards to all...
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