SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Use this thread to add any links which might help us
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
521 members
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Use this thread to add any links which might help us

I thought one thread to add links to information that might be of interest to us rather then trawl through pages (hopefully it will be pages if we get lots of members).

LUMBER PUNCTURE (SPINAL TAP)

This is a useful link for finding out about the results of a LP/ST.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36

Map of the Spinal column:

http://www.makoa.org/scimap.htm

Interesting article about Gadolinium:

http://findarticles.com/p/articles/mi_m0850/is_n3_v8/ai_9369099/

This is a brilliant piece by Jodi Bassett about MS V FIBROMYALGIA. It makes very interesting reading and I would recommend you follow through on some of the links especially about CFS.

http://www.ahummingbirdsguide.com/topicmedefsandfm.htm

Here is a website about functional or dissociative neurological symptoms. Many of us are diagnosed with this:

http://www.neurosymptoms.org/

A really useful link to a thread on medhelp by a poster about TIMELINES and what to do before you visit the neurologist.

http://www.medhelp.org/posts/Multiple-Sclerosis/Time-line-101-repost-with-Quixs-comments/show/237143

A useful website for people who want to practice Yoga. Its important in limbo land to keep active I found this website very useful.

http://www.yoga4pwms.co.uk/

Well I have made a start so anyone who has useful links please post on this thread. Thanks. Maria
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28 Comments
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Some useful links:

http://www.ldnresearchtrust.org/ (main site)

http://forum.ldnresearchtrust.org/ (forum)

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These are differential diagnosis to ms

http://www.mult-sclerosis.org/differentialdiagnosis.html

http://library.med.utah.edu/kw/ms/dd.html

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=1308
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EVOKED POTENTIAL TESTING

VISUAL
http://www.mult-sclerosis.org/VisuallyEvokedResponse.html

SENSORY

http://emedicine.medscape.com/article/1139906-overview

BRAINSTEM
http://www.nlm.nih.gov/medlineplus/ency/article/003926.htm
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592988_tn?1227276679
Hi

What useful links! Thank you for adding.

Its unfortunate that we have to become almost like doctors in order to get somewhere with neurologists but I guess judging from our evergrowing list that we are all up to the task.

Remember, knowledge is power.

Alice
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LUPUS:

http://www.uklupus.co.uk/dxlupus.html
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ME may be caused by retrovirus. This could be some hope for ME sufferers. I've had my say though underneath the article. The journalist has lumped ME with Yuppie flu and chronic fatigue. I had to point out that Myalgic Encephaalomyelit is classed as a neuro disorder by the World Health Organistaion.

http://www.dailymail.co.uk/health/article-1219207/Chronic-fatigue-caused-retrovirus-say-scientists.html#comments
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I am glad you posted this as I was trying to find what paper it was in yesterday.

So now a retrovirus isnt that a DNA thing (GENE).?

I too have posted a comment, I liked yours go girl. So many people out there who are ignorant about M.E. SADLY EVEN doctors.
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My link should read Myalgic Encephalomyelitis, typing is shaky.

Retroviruses
http://www.microbiologybytes.com/virology/Retroviruses.html

Make of this what you can :) Scroll down to the bottom though and you will see neuro problems with retoviruses.
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This is a useful resource:

http://www.brainandspine.org.uk/about_us/index.html

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I don't know how to move Mrs A's post so I have cut and pasted it from recipes ;)

From Mrs A, a great post. Yoga is sooooo important...

YOGA.

Yoga is brilliant for those stiff achy legs especially in the morning.

Sit on the floor (if you can - or just lay on your bed sat up).

Touch your toes. This will stretch all your leg muscles and really does help.

This is a great site for Yoga. Although it is designed for MSERS it is also useful for all of us either with possible MS/ME/FIBRO/LUPUS etc.

http://www.yoga4pwms.co.uk/

Its really important to try and exercise even if it is just a little gentle walking.

Obviously if you might have M.E. then too much exercise will make it worse but you can find a happy medium that will help you without harming you.

Morning stretches are a must LOL. (Just pretend to be a cat).
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OK, read with an open mind.

The main reason I am posting this link is because of the info about diet and MS and specifically Roy Swank's theories.

Also, to show that neurological conditions are prolific and that we are not alone, as if we didn't know that...

Finally, if you find something that personally helps than stick with it as the young man did with acupuncture...

http://www.thenutritionreporter.com/MS-Polio_of_the_90s.html

Happy reading.
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I don't actually want to be defined by my limitations.

I have met folks who, um, delight in being defined by their disability namely a great majority at the local MS centre.

I discovered Able. Great magazine, great site and great attitude.

http://www.ablemagazine.co.uk/

Happy reading!
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This is autoimmune and can cause optic neuritis and myleopathy. Sometimes it can look like primary progressive MS. They have also found people with PPMS can also have Sjogren's. Main symptoms are dry eyes and mouth. It can also be seen with systemic lupus and arthritis.

http://www.sjogrens.org/
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DRUGS

I've found this one to be really good.   drugs.com    Charley
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Thanks for pinning this thread.

I just read this site - http://www.neurosymptoms.org/

It's about functional/dissociative disorders, the sorts of things many Limbolanders are supposed to have. I.e. not organic illness but symptoms arising from 'inorganic' causes (hold that thought...a bodily disorder that is 'inorganic': tell me how that makes any rational sense?)

As I read through the site's pages, I felt that almost anything could be classified as 'inorganic', functional,dissociative etc.  I'm struggling, for example, to see how Irritable Bowel Syndrome is classed as 'functional' when tests clearly show physical inflammation of the bowel lining. That inflammation had to have been created by something ORGANIC!

It's all a very convoluted mystery to me. The clincher and massive flaw in this elaborate 'somatoform' hypothesis is that the author gives a picture of an MRI SHOWING a 'functionally' symptomatic patient's brain - the scan is notable for highlighting a brain area that is demonstrably ORGANICALLY dysfunctional or diseased....

In other words, this doctor is saying that MRIs can show actual physical, detrimental changes which give rise to bodily symptoms yet somehow these are not considered 'real' physical disease. Huh? This simply is not logical. And the author gives no explanation for this paradox yet blithely claims such scan results as an explanation and proof of the neurological profession's rectitude!

So they seem to have a cut-off line between which diseases are 'real' and which are 'not real'. The actuality or reality of these diseases/disorders does not depend on their evidenced physical nature - it seems to depend entirely on other factors which are largely to do with the body of neurological thinking/philosophy.

Are you with me...? Remember, this confusing mess of gobsmacking convolutions is actually *theirs*, not mine.

Off the top of my head, I'll try and sum the problems with this mess as I see them:


1. The vast majority of doctors understand 'functional' as psychological symptoms.

2. Psychiatric patients are routinely treated poorly and routinely dismissed or bludgeoned with the chemical cosh and/or cognitive behavioural therapy.

3. Most diseases throughout history were first ascribed to 'inorganic', ethereal even demonic affects. As science progressed, many diseases have been found to have clear physical genesis.

Here's a simple one - stomach ulcers were thought to be due to the effects of stress until relatively recently when a courageous doctor infected himself with the heliobacter pylori bug, developed stomach ulcers and thus showed conclusively that these ulcers were caused by an easily eradicable agent and thus curable.

Similarly, malaria (literally mal aria = bad air) was thought to be caused by, yep, being in a place where the air was somehow prejudicial to health. So the cure was to avoid bad air hotspots and to move sufferers to a place with 'good' air. It's no coincidence that the 'good air' places were those where mosquito infestation was nil or minimal! But the good doctors never cottoned on to this connection for centuries.

Epilepsy and migraine were for centuries thought of as visitations from Satan!

4. The sheer ludicrousness of showing a brain scan with tangible and coloured-in areas of  'misfiring' and yet calling it an 'inorganic' disorder is breathtaking in its convolution!  No doubt many people with stomach ulcers were once shown xrays of their tangible problem whilst being told it was 'stress'. I always look for the simple, straightforward explanations: this current diagnostic methodology is far from simple.

5. Thus I am confident that science will at some point redefine these carefully coloured-in 'not physically diseased' brain bits as formally identifiable physical and treatable disease (this will probably be when Big Pharma invents the drugs! It'll then be lucrative and satisfying for clinicians to be able to cure their previously 'dysfunctional' patients.)

6. Until then, these 'functional' disorders will continue to be swept under the carpet - much to the suffering and distress of patients and their families.

7. Just as the physicks of old were so utterly convinced of their rectitude so it seems our contemporary doctors are convinced that they are so right. Plus ca change ce la meme chose...

8. Such ad hoc definitions of disease seem to be far more dependent on prevailing opinion rather than hard science. 'Opinion' calls up the spectre of ego and its need to dominate over another's opinion.

As an interesting, yet tangential, aside I'm very interested in how a new generation of researchers is redefining the autistic spectrum. Autism was also thought to be caused by all sorts of demons and then psychological influences (e.g. the 'refrigerator mother'). Now a new, more open-minded cohort of scientists are looking at autism and identifying this different neurology as just that - a different and physically-based neurology. There are still those professionals ('experts') who cling to their old opinions with ferocity though. That's ego and not science though.

9. We patients get caught in the crossfire of ego and opinion and the 21st century medical world's equivalent of Stone Age trepanation - where they used to drill holes in their skulls to let out the 'demons'!!  

10. Now we mostly get metaphorically holed and sunk by all this convoluted thinking which is never clear and explanatory, rarely transparent. So this is my last point: the profound level of confusion we experience from our doctors is unhealthy in itself. The lack of transparency is pathological and generates distrust and fear.

But the medics will not ever be able to be honestly upfront with patients until they're upfront and honest with themselves.

I am tired of having *their* confusions and convolutions foisted upon me and adding to my illness.

BTW - Anecdotally, I can't ever remember meeting anyone who has been formally diagnosed with a 'functional' illness and sent for treatment for the 'dysfunction. I do however know scores, even hundreds, of people who've been told that their illness was 'stress', psychosomatic, 'functional' and who have then gone on to be diagnosed with one of those illnesses on the neurologist-approved 'real' list. Or who have suffered badly or, tragically, later died as a result of this chronic misdiagnosis as 'functional' patients.

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just came across this article that might be of interest to the group:

http://www.myelitis.org/newsletters/newsletter7-2-05.htm
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the woman that writes this blog is one of us:

http://medicalpuzzle.com/
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Thanks for posting this. It mirrors my thoughts very well. I'm thinking of starting a thread on this specific topic. I'd like to know how many people here in this corner of limboland have had their doctor, family or friends think this is "just stress" or a psychiatric disorder as opposed to a physical problem.
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top U.S. Hospitals:

http://health.yahoo.net/articles/healthcare/best-hospitals-2010-11-honor-roll

hope this is helpful.

best wishes,
binx
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A great resource for anyone who wants to learn more about neuromyotonia/Isaacs Syndrome - you have to join, but it's free.

http://isaacsyndrome.proboards.com/index.cgi

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Hi Sammxxx,
I remember seeing a link you posted about the spine, but haven't been able to locate it. If you have a sec, could you repost it?
--faithHGL
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I don't know if this has already been posted.  If it has, my apologies for not being more vigilant.  It's a great site on all the symptoms and diagnosing problems they have for Lyme's Disease.  Hope it's able to help someone out in Limbo Land.  

Wendy

http://www.canlyme.com/patsymptoms.html
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Here are a few good links to sites about neurological exams:

http://www.prohealthsys.com/physical/neurointro.php

http://cloud.med.nyu.edu/modules/pub/neurosurgery/

I like the first one, because it is more detailed and really helps clarify definitions of some medical terms. The format is to divide the exam into sections and then explain each test within the section. There is a link to normal and abnormal results and a way to correlate findings of different tests as well as the parts of the CNS that are targeted with individual tests.

I included the NYU link because its been around for a while and is a common reference.

Study both links and there will be an pop quiz sometime next week.

Just kidding!

Audrey
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This one gets me soooooooo mad.

There is an over reliance on the utility of neuro-imaging (e.g. CT, MRI). These studies provide an evaluation of anatomy but not function. Thus, while extremely helpful, they must be interpreted within the context of exam findings. Careful examination may make imaging unnecessary. Also, exam findings can make a strong case for the presence of a pathologic process, even if it is not seen on a particular radiological study (i.e. there are limits to what can be seen on even the most high tech imaging).

.................................................

I believe this has happened with me.

My first MRI head showed a LARGE cluster of HIGH SIGNAL FOCI in the deep white matter of my brain..................

DISMISSED as my age......

RUBBISH. I have since found out that these Foci do not occur in aging, or high blood pressure ......... they show up only as white spots........not HIGH SIGNAL.

Now really in the grand scheme of things with my presenting symptoms I should have been diagnosed with MS and also the fact I could not bathe in hot water, and have Utoffs syndrome and had OPTICAL NEURITIS in BOTH EYES.

Bah humbug. Stupid medical exams.

And I loved reading that a lot of people performing these exams unless they are experts will have no clue as to the results.

What chance have we got really..........................................
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A novel holistic explanation for the Fibromyalgia Enigma:

http://www.fmpartnership.org/Lavin%20article.htm

I thought this article very interesting as when you speak to people with fibromyalgia, all their problems are linked with the Autonomic nervous system.

Maria
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WHY LYME DISEASE IS NOT JUST A TICK-BORNE DISEASE
ANYMORE!

Hey Limbolanders,
I'll try this again. Just lost what I had ready to send.
Please do not miss this interview and article at Dr. Mercola's website
Feb.5, 2012
It refers to many things I've been telling people for years.

This is becoming an epidemic!
Don't miss it!
Love, Strength, Courage!
Niko
http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20120205_SNL_Art_1

Tags: Lyme Disease, viral infection mycoplasma, Babesia, Bartonella, degenerative chronic diseases, neurological disease, Fibromyalgia, Chronic Fatigue Syndrome
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