[NeuroNixed Craig]

For years I've been visiting the MS board and that turned out to be a gross misdiagnosis. They changed that to "suspected" Hereditary Spastic Paraplegia for a while but I am NOT going though genetic testing just so some neuro can confirm a diagnosis. My symptoms and disability continued to progress rapidly.

Then I suffered a near fatal brain stem stroke, unrelated to the neurological disease. Doc's freaked because they couldn't tell if my symptoms were stroke or neuro disease related. Took about 8 months to get back to about 90% prestroke base-line recovery.

Then I started exhibiting progressively severe involuntary movements consistent with Tardiv Dyskensia and Distonia. Now categorized as nonspecified Dyskensias family. I was referred to a top level neurological diagnostician who finally diagnosed Dyskensias, Dysarthria, Spinocerebellar Ataxia with Atrophy, and Cerebellar Degenerative Disease with Ataxia.

All accompanied by severe and increasing symptoms including chronic pain at a mean level of 8+, sleep wake irregularity disorder with sleep deprivation and increasing cognitive degeneration. What does this all mean and why don't I fit in anywhere on this forum?

Simply because of the complexity of my case. There is no treatment even through the use of strong meds, and this is a terminal situation. Med's are not effective because the primary disease is in the cerebellum and to off set the severity of symptoms requires that I need to be almost unconscious. Not how I wish to live.

In the last six months I've had two prominent neurologists tell me not to bother making further follow up appointments as there is nothing they can do. My PCP who is absolutely awesome, has reached the end of what he feels he can safely treat referring me to a prominent Pain Management Specialist and Clinic. He told me I was one of 3 cases he has seen in his career and had no advice or options. He personally referred me by telephone call, to the top Physiatrist in our part of the state. I moved up in the world because he said I was one of 6 cases like mine he had seen in his 35 year career. Are you getting the picture yet?

He is a doctor of last resort although he is doing research on my case and wants me back in 6 weeks to review his findings. Cautiously optimistic is the best I can do. So I see no real place on this, or any other forums I've visited, with a category dealing with terminally diagnosed people. I do reserve the right to be totally wrong though. Any suggestions, links, referrals to other forums, will be greatly appreciated.

I apologize for the length of this post but I don't know how else to get the points across for one to comprehend my challenges. Thank you for reading.

[SecretAgentMan]

Craig, I'm very sorry to hear about your situation... For your MS-like symptoms did you have involuntary muscular twitches and muscle spasms? If so there is something you might want to give a shot Now, this may sound a litte out there, but please hear me out.

I am 31 years old and about 8 months ago I started experiencing involuntary muscular twitches and muscle spasms. After a lot of testing, blood work, brain CT scans and a neurologist refferal, I was left with no answers as to what was causing my symptoms. Its a long story, but through homeopathic doctors and internet forums, I found the answers I was looking for. As it turns out, my neurological symptoms were being caused by an adult onset food sensitivity, which itself was a symptom of another condition caused by Candida. Candida is a fungus that lives in our digestive tracts. Normally it is kept in check by the helpful bacteria that live in our small and large intestines. As you know, we are an antibiotic using society. Antibiotics do not discriminate which bacteria they kill when we take them, and our intestinal bacteria are on the front lines and thus take major casualties.

This affords the fungus Candida the opportunity to 'move in' and take over our digestive tracts. The human body is resiliant and does its best to withstand Candida's harmful effects, but over the years Candida wins the battle. Over time the Candida weakens the intestine walls and allows undigested food protiens and the Candida itself to be absorbed into our blood streams. Our bodies see the undigested food proteins as foreign invaders and antibodies are created to fight them. After a while, our bodies learn to associate the proteins with the particular food we ate and begin to proactively attack. This is how food sensitivities are developed.

Now a food sensitivity is different from a food allergy. Food allergies are an immediate and direct immune response to a certain type of food. Food sensitivities however are more subtle, can be delayed in their reaction by up to 72 hours, and are more of a second hand reaction to the immune response of the antibodies. This makes food senstivities much more difficult to pinpoint and diagnose. Furthermoe food allergy tests will not tell you if you have a food sensitivity.

In my case, I had become sensitive to wheat/gluten and dairy originally. Typically you become sensitive to the foods you most often eat and these two are staples in the American diet. They are in just about every meal we eat. I was twitching 24/7 and the reason why was because I was never giving my body a chance to clear itself of the foods I was sensitive to. Once I did begin avoiding foods I was sensitive to, the symptoms subsided within about 4 to 5 days. Don't be discouraged though because food sensitivities are not permanent!

Candida itself can also be the culprit in your neurological symptoms. In the reading I have done, Candida will settle in different areas of your body once it gets into your blood stream. Once it is there it will disrupt the bodies natural process. It is for this reason that the symptoms of Candida in your system are so incredibly vast. If it settles in your joints it can cause stiff and achy joints often mistaken for arthritis. If it settles in your bladder it can eventually lead to loss of bladder control. It has been linked to fatigue, anxiety, depression, auto-immune diseases, enlarged prostates and ED in men, yeast infections in women, poor memory or 'foggy brain', insomnia, sleeping disordes and the list goes on. Who knows the neurological havoc it can cause if it settles in the brain or around nerve endings. So many condiitions people just accept as part of getting older are actually symptoms of Candida. I myself at the age of 31 was noticing that I felt more fatigued (wake up tired and be exhausted at night) and my joints would be stiff or sore after going for a run. I just asociated it with me being in my 30's now.

There are diets and plans all over the internet to help eliminate Candida from your system. Candida feeds on sugars, alcohol and vinegars so a lot of the diets have you avoiding these types of foods. A lot of plans even have you avoid fruits because the body easily converts them to sugars. I found a plan that I have been following for a few weeks now and I am absolutely blown away with the results so far. I like this plan too because it does allow fruits in the diet. The plan architect is Dr. Jeffery McCombs. He also has a book about Candida that I highly recommend called 'Lifeforce.' Its a quick read as it is only about 100 pages long, but its packed with a great deal of good information. The plan is called the McCombs Plan. I recommend you google it.

I did internet research to select my Candida elimination plan and his got a ton of possitive reviews. It was a shorter plan (16 weeks) and it allowed for fruits in the diet. The results started to really shine in just a few days of starting the plan too.

This may or may not be the answer to your problems, but I think it may be worth a shot. I was amazed at the information I learned about Candida and all the problems it causes and don't understand why it isn't more promenent in the mainstream medical community. I can only speculate. All I know is that I've been having huge success with this Candida elimination diet and I want to spread the word. It was extremely difficult for me to find these answers and I know there are others out there who have been suffering far longer and far worse than I have been. Please keep us posted if you decide to pursue and let us know how it goes. I wish you the best of luck.

[NeuroNixed Craig]

Thank you for the comprehensive and well thought out response, sharing your experiences. Yes, I've been down that road in depth also, but with negative results. I actually became excited as at one time my PCP suspected since I was on Reglan for so many years and at the maximum dose that may be the cause. Reglan was recalled by the FDA just two or so years ago because of causing temporary onset and permanent Tardiv Dyskensia.

My last neuro ruled it out too and again feels the linkage is familial and due to the degeneration and atrophy of the Cerebellum. In addition, I don't eat much any more due to loss of taste and difficulty with fatigue in mastication. I can taste chocolate, an ice cream flavor or two, real salty stuff, salmon and tuna fish. That's about it.

I appreciate your indepth thinking and sharing of information. I hope to keep the board up dated as time goes on.

[Rrae]

My heart truly goes out to you.
'SAM' gave you some great input in the post above....lots of good info!

It saddens me to see that you don't feel you 'belong' here....
I completely understand your frustration regarding your complex medical condition, but you DO belong here! We may not be able to diagnose or attain to 'resolve' your symptoms.....but it's the SUPPORT you need to help you as you wade thru your issues. NT is the greatest forum I've ever known!
Most of the 'other' forums I've come across are spattered with strife, discontent, spam leaks thru.......not here. This forum has a very commited team of members who work round the clock to make certain that this remains a 'safe' place, so that we can remain as one big family....each of us are suffering in our own way, yet we still gain strength from one another, even just to get thru another day.

Please accept this hug from me to you and to say that you DO belong here! Your 'family' here CARES about the issues that you are facing and what this is probably doing to you psychologically...

I remember when my father had a 'stroke' of some sort years back. It took FOREVER for the doctors to finally pinpoint what was happening to him. He'd suffered a stroke in the 'thalamus', which is basically in the middle of the brain. The frustration we all went thru as a family during that time was beyond comprehension. NObody seemed to be able to offer ANY help. We weren't getting answers, and frankly, we thought we were going to lose my dad. He thought so as well.
It took time, but as the weeks and months unfolded, he was able to get his life back.....but without the support and network of friends/family/church etc, we ALL would have just figured it would be easiest to just 'give up trying'.

The thing I love the most about this forum is that it covers ALL the bases!
If you aren't getting the medical answers, well, there's a forum to reach out spiritually. If you aren't spiritually inclined, there is a forum just to 'vent' if nothing else. There are forums that center in on healthy dietary/supplement changes we can make. There's even a forum (one of my favorites ) to just 'let it all hang out' and be silly and not even have to make any sense at ALL! Humor truly does help when it's appropriate.

It appears that you aren't getting any 'clear' diagnoses, but you've certainly got SYMPTOMS. Share your symptoms and, like the poster above, you'll get others (just like you) who battle the frustrations of not knowing what is going on. That right there is valid reason to 'belong' here!! Half the time NONE of us know what the heck is going on to our aging bodies!!!

If we had to fit any particular 'mold' to belong here.....then this forum would be empty. You belong here because YOU are suffering. That's what we are ALL here for.

You 'belong', Craig

Truly Caring
Rae

[SecretAgentMan]

Bummer... Well, it was worth a shot. I truly hope you find the answers you are looking for.

[NeuroNixed Craig]

Rrae, Great response bringing out many points I had yet to even consider. In not belonging anywhere specific causes me to belong here because of it.

I had made mention some where else, so I can't remember where, to create a category for "Terminally Ill and Dying Regardless of Cause." A nondiscriminatory forum as the cause doesn't matter. A responder pointed out that everybody would be a member since we are all dying at some point.

What makes coming here of value and benefit to me is the members listen, relate, and share some really great and applicable information like SAM. Otherwise I would not know about it to even consider.

I guess in less than 12 hours now I have come full circle. Not fitting in any category to fitting in all categories because this is a "Support Groups" forum.

You have successfully improved my day and I thank you both.

[Rrae]

WELL, by golly! YOUR post just made MY day!!
I just LOVE how this works!

The support here just bounces back and forth to everyone!
........ ya know, actually, i think it WOULD be an awesome idea to create a new forum for those of us who feel we don't know WHERE we belong!! have a great day!

[SecretAgentMan]

Craig, I had another thought. Have you tried a homeopathic doctor? I used to think they were as phony as tarot card readers, but my experience with this Candida has totally changed my perspective on them. They are usually listed as 'chiropractors' in the phone book or on the internet. I have been seeing a homeopathic doctor to treat my 'Leaky Gut Syndrome' and Candida problems. At first the techniques and treatments seemed so foreign to me that I truly started to question if I was wasting my time and money. Being a mechanical engineer who likes to understand how things work, I asked all kinds of questions about what the doctor was doing, how it worked, why it worked, etc. Astonishingly the explanations made perfect sense, so I decided to stick with it. All of my original doubts quickly disappeared when I began to physically see and feel the results.

The doctor explained to me how the human body is electrical in nature. Although our processes and functions are bio-chemical, we produce and conduct electricity. This is why our heart can be stopped or jump started by a shock and why different functions of our body can be activated by electrical stimuli to different areas of the brain. The doctor further explained to me that there are natural energy pathways in the human body and compared them to a creek which flows into a stream, then a stream that flows into larger stream, then a larger stream that flows into a river, etc. If you were to dam one of those rivers, it not only affects the upstream pathways, but the downstream pathways as well. Similar disruptions can be caused in the human body if our system is not in balance. There are treatments such as acupuncture and cold laser therapy for example which help address these imbalances. They also have an electrical frequency test that can tell if you have parasites and what kind. Parasites have been medically linked to all kinds of disorders and diseases, including cancer.

Anyway, I realize this may sound 'out there' to someone who has traditionally always gone through the mainstream medical community. I know it did to me. My mother is big into homeopathy and is the one who suggested I try it when conventional medicine failed to give me the answers I had been looking for. Low and behold a new world was opened up to me. If you are running short on options, you might want to look into what homeopathic doctors are recommended in your area. It may be worth a shot. Again, I wish you the best of luck.

[NeuroNixed Craig]

In looking at my progress over the last several days and coming back to this original thread, it's almost funny, funny ha ha, to me now.

Why? Because I posted this or a similar thread on a couple of major health forums and this is what I have learned and without a doubt in my mind.

"I Don't Fit Any Category Here! BUMMER!" is not accurate at all. I find now I actually fit the following categories, some I will bookmark and follow, others have such low activity it's not productive:

1. General Health Conditions & "RARE DISORDERS"
2. Chronic Pain
3. Emotional Support
4. Multiple Sclerosis
5. Peripheral Neuropathy
6. Stroke

This also includes another completely different forum with similar categories. It's not about "fitting into a category" that's important. It's where can one get the support they need for their unique situation and in turn, render support to others? That is the bottom line.

I owe it to you guys for helping find a direction and not laughing at me or blowing me off, as occurs on so many other forums. So I guess now the real journey begins. I just need to make sure I don't allow my participation to eat up too much time. Onward, Upward, Sidewards, but no Backward allowed!

[SecretAgentMan]

I am glad to hear that you are gaining confidence and a positive perspective again. I know what it is like to get discouraged. There is always hope as long as you do not give up!