Diagnosed today and devastated

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Diagnosed today and devastated

Postby Lolls41 » Fri Feb 22, 2013 4:21 pm

I just dont know what to think. Hurt my back a year and half ago, after had pain for long time but had that also when injured previously but it healed itself. Leg dragging and couldnt run or walk fast. Eventually went to doctor who saw on mri leisons on spinal cord. Then referred to neuro and after tests got ms dignosed today. I just dont know what to think or do. Booked in for steriods bext week and see what to do after that. I am so stuck for words. I havent told any family members but one friend. Oh christ what to do and think. What the hell does the future hold? Sry see people on this and in same boat.
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Re: Diagnosed today and devastated

Postby lyndacarol » Fri Feb 22, 2013 6:57 pm

Welcome to ThisIsMS, Lolls41. You have found a group of new friends who understand much of what you are feeling today. We are here to share our experiences, to answer your questions as best we can, and just to listen, if you need that. Take a deep breath; I think the near future holds the answer for MS and ALL of us!
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Diagnosed today and devastated

Postby ljelome » Fri Feb 22, 2013 10:29 pm

Hi!don't worry lolls41...i've been there. .we've all been there n feel how u must feel right now.
There will be a way for u n all of us.
We still have hope if we believe.
He will provide a way out for all of us.
Don't worry just follow the way..do what the doctor say..n seek for your answer. U will find one.
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
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Re: Diagnosed today and devastated

Postby Lolls41 » Sat Feb 23, 2013 7:23 am

Where does it all lead and what does the future hold is just a massive question. Why me!! I know everyone asks the same but i had guessed this was going to be the diagnosis. It doesnt help that i work in an emergency department and see patients everyday with this. Now that is me.
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Re: Diagnosed today and devastated

Postby ljelome » Sat Feb 23, 2013 8:21 am

Dear lolls41,
I have the same question like u n i still don't know the answer yet. why me lord?why not other person instead? i posted in mental n spiritual health if u'd like to read.
All d best wishes for u n Gbu...
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
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Re: Diagnosed today and devastated

Postby euphoniaa » Sat Feb 23, 2013 6:06 pm

Lolls41 wrote:Where does it all lead and what does the future hold is just a massive question. Why me!! I know everyone asks the same but i had guessed this was going to be the diagnosis. It doesnt help that i work in an emergency department and see patients everyday with this. Now that is me.

Hi Lolls41,

Like everyone else I'm sorry for your diagnosis, but I welcome you to the forum! :smile: And despite the clues to the contrary, you have definitely landed in an MS forum and not a religious forum. :-D Personally I'm a bit disturbed when confronted with either partisan political posts or partisan religious posts, but they're usually rare.

There is lots of information here, with many subforums, so feel free to wander around and explore them all -- read, ask as many questions as you want, and feel free to tell us more about yourself. Sadly, there are actually no undisputed "facts" about MS. You'll find out soon that each of us seems to have a completely unique version of MS anyway, and likely has a totally individual approach to it. And at this forum, we're able to explore and discuss MS from any angle, from mainstream treatments to experiments and speculation that may seem a bit "out there."

And no one of us knows what our future holds - either from MS or from life itself. I've had MS for at least 40 years (likely longer than that) and at this point, I'm much more concerned about my other medical issues. My best advice is that no matter what your treatment choice, it's most important to take care of yourself by optimizing your overall health.

I'm positive that the reason I'm doing relatively well is that I developed my healthy diet and exercise routine many years ago - way before my more recent MS diagnosis. I don't consider diet & exercise MS "treatments" but they just make it so much easier to live the MS life! :smile: And it's helping to ease my body into old age. :smile: And my general good health has gotten me through my other recent totally non-MS medical crises!

I did look up a couple of quotes about prognosis on the net. MS is not an automatic descent into disability.

From the University of Maryland:
Prognosis:
Multiple sclerosis is not a fatal disease. Except in rare cases of severe disease, most people with multiple sclerosis have a normal or near-normal life span and usually die from the same conditions (heart disease, cancer) that affect the general population.

The majority of patients with MS do not become severely disabled. Twenty years after diagnosis, about two-thirds of people with MS remain ambulatory and do not need a wheelchair, although many of them may use a cane or crutches for walking assistance. Some patients use an electric scooter or wheelchair to help cope with fatigue or balance problems.


And from the MSIF: http://www.msif.org/en/about_ms/types_of_ms.html
**A large percentage of people with MS (approx 45%) are not severely affected by MS and live normal and productive lives

**There is a significant group (40%) which become progressive after a period of some years as relapsing-remitting

It should be remembered that many people with MS go through life with a manageable disability (e.g. fatigue, a limp, bladder problems). At least 15% of people with MS, however, will become severely disabled (i.e.having to use a wheelchair on a full-time basis). Life expectancy for persons with MS is near normal.


For those who seem to be hit particularly hard by MS, you'll find out that often our other medical conditions are to blame for a lot of our main distress. I guarantee that's the case with me.

As for your first question, "Why me?" ... I feel very grateful and fortunate that I wasn't diagnosed until I'd spent 30 years adapting, adjusting, and accepting my wayward body, because my first reaction after I left the doctor and looked up MS on the internet was, "Wow, what a crappy disease! I must have had MS for at least 30 years and it hasn't managed to kick my ass yet! Cool!" And it definitely didn't take away my absurd sense of humor. :-D

Wishing cool, calm acceptance and healthy bodies to everyone tonight!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Diagnosed today and devastated

Postby vesta » Sun Feb 24, 2013 7:45 am

If this started after an accident you could well have Skeletal MS.

After Diagnosis
Once the diagnosis has come down, it's a demyelating disease, probably MS, step back and relax, at least you don't have a brain tumour. And stress and anxiety will only make matters worse. Imagine the blood backing up, flooding your brain and/or central nervous system. You have to stop that reflux as soon as possible. That means RELAX. All the diagnosic tests in themselves are stressful, so step back from all that and begin to inform yourself.
Marc Stecker of Wheelchair Kamikaze believes that the immunosuppressive drugs developed over the last 20 years are the best treatment now available since they appear to have slowed disease progression for relapse/remit cases Nonetheless reports of efficacy are contradictory and reported side effects often serious, even fatal. Drugs are not the only option available although it's likely the only one the Neurologist will offer. Neurologists are treating an immune system reaction to a blood reflux. They are treating a secondary problem. Consider treating the original problem instead. But to do that you will have to take matters into your own hands.

I believe a major illness is a call to change. Either one participates in the transformation, or one will be transformed against one's will. I also believe true healing requires a healing partnership. The best healer acts as a faclitator in one's own self transformation, not as a director. The worst thing one can do is act like a passive object on whom an omnipotent Doctor works his "magic". An alternative healer (naturopath/nutritionist/kinesiologist???) who can help you think through the various options can be an important complement to "official" medical contacts. Now is the time to act.

Refer to the previous blog entry - MS Cure or Control: A Review

1) First, Stop the "attack" which is actually a blood reflux. I've found a neck massage forcing the blood down towards the heart is enough to stop one for me. An Acupuncture trreatment - the Gall Bladder Meridian and Bladder Meridian must be treated (see Acupuncture blog entry) - has worked for me. Your problem may be structural, so a Chiropractic or Osteopath's adjustment on the Atlas and upper cervicals might release the brain fluids. The Neurologist might have a drug which will stop the attack, though I wouldn't take something that you can't get off of after the crisis is passed. (My own early experience of an MS attack meant 6 weeks - 2 weeks of "attack" (the blood must be flooding the CNS), 2 weeks of "scarring" when the myelin dries up, and 2 weeks to recover most of lost function, leaving some deficits.)

2) Once the crisis is passed, get busy on finding a practical solution. First off, analyse what stress factor triggered off the attack. Was it emotional, professional pressure, or some kind of poisoning such as too much aspartame? An accident which injured the head-neck,back? Keep a journal and note whatever issues trigger off a problem, play the detective in your own life. Then make the necessary adjustments.

3) Consider the TOXICITY factor. Stop Aspartame and other food additives at once. (Don't bother with the mercury dental amalgams, at least not at first. Having them removed can even increase the toxicity if badly done, and there are many other factors to consider first.) I include food intolerances in the TOXICITY category.
DIET: Assume you have a gluten intolerance. Check out the Paleo-Macro diet page on this site. I favour Kinesiology to determine the ideal personalized diet, but a good therapist may be difficult if not impossible to find and for some the method (muscle testing) may appear akin to witchcraft. So find a good naturopath/nutritionist. The Paleolithic Diet developed by Roger MacDougall can be found on Wikipedia. Jimmylegs on the ThisIsMs.com site is their on site diet expert who gives referrals to other resources.
DETOXIFICATION should be part of the therapy.
SUPPLEMENTS Besides the vitamins A, B Complex, C, D, E, include Calcium Magnesium, Omega 3, Zinc, Evening Primrose Oil, Seek good advice and do your own research.
INFECTION: Some believe that infections such as Chlamydia Pneumoniae, Lyme, Epstein-Barr or other infectious diseases actually damage veins and their valves. Is the Infection still ongoing, or has it passed leaving a damaged vascular system? Some believe by treating the infection through antiobiotics the inflammatory reaction to the infection can be halted, thus restoring the vein to its proper function and preventing the blood reflux. Again the veins are implicated. However, long term treament with antibiotics obviously requires a Medical expert I was treated for a chronic infection using Standard Process Cataplex A-C, Collagen C, Calcium Magnesium and Zinc (among other things.) I believe a naturopathic protocol superior and less toxic than antibiotics. (imagine how the intestinal flora reacts to all those antibiotics.)
IMPORTANT: I believe that in the early Remit/Relapse phase one has the greatest chance to entirely heal the myelin sheath/nerve damage before it has actually dried up into a "scab" or scar. I did so within 4 years of the first big "attack". But now for me (26 years later) it is more a question of preventing further degradation.

4) Consider the STRUCTURAL factor. This means consulting with body manipulators such as Chiropractors or Osteopaths. Dental misalignment may be an issue. Once the area of blockage is identified, you may be able to treat yourself regularly with massage, stretching etc.

5) Consider the BLOOD CIRCULATION factor. Acupuncture, Self Acupressure, Ayervedic Massage, Osteopathic, Chiropractic, Swimming can all enhance blood circulation without the risk of angioplasty. I am now able to control the blood reflux through self acupressure on a daily basis. Acupuncture treatments must focus on the meridians which pass from the head, down the neck and across the shoulders or down the back, the gall bladder and bladder meridiens. Otherwise they probably won't be effective on the blood circulation.

6) ANGIOPLASTY decision. Begin by seeking NON-INVASIVE diagnosis of your veins. A quick look on Google brings up a clinic called Privatescan in Brussels which claims to use non-invasive CCSVI investigation techniques and diagnosis protocols - CT Scanner from G.E., CT venography with contrast agent, EchoDoppler Duplex from GE, 3.0 tesla MRI Scanner (MRI venography) with G.E. contrast. (I need to research this further, but so can you. I'm not promoting any clinic or therapist for angioplasty. If anything, I believe angioplasty should be tried only if all else has failed. see Angioplasty Decision blog ) If you decide on angioplasty, it is imperative that the Doctor use an INTRAVENOUS ULTRASOUND to open the stenosed veins so he can see what he is doing and avoid injury to the vein wall. Also, be assured of follow-up care.
If one has a serious vein obstruction, deformation or the vein is simply missing, angioplasty may be the only solution. It of course would be grossly unfair to imply one hasn't tried to heal if the veins are defective or even missing. It would be like admonishing an amputee that if he really works on it the arm will grow back. Of course it won't. Annette Funicello very generously and courageously published a video showing how far her disease had progressed as well as the results of an angioplasty procedure. One jugular had been entirely blocked, the other 70% blocked. She and her husband Gene Holt believe this is the only treatment which has helped her over the past 25 years of illness and she wants to promote the CCSVI theory to help others, believing if she had been treated years ago she wouldn't now be paralyzed.

IMMUNOSUPPRESSIVE DRUGS- If one has a serious physical vein blockage which causes a blood reflux, probably one will require medication to minimize CNS damage until angioplasty can release the blood flow. In this case the Neurologist would seem to be the best therapist. Tricky issue.

I want to encourage the newly diagnosed to act in their own self interest. MS isn't a death sentence, it's a call to change, the sooner the better and with you as an active participant.
These remarks are above all an admonishment to myself for having let myself fall apart after my first dramatic healing. A kick in the butt you might say. But now that the CCSVI theory is on the table, we have every possibility to take control of our fate. And in the first instance, that means ME. I'm now going to finish my personal history with particular emphasis on MY MISTAKES.

MS Cure Enigmas.net

http://www/mscureenigmas.net/index.html
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Re: Diagnosed today and devastated

Postby euphoniaa » Sun Feb 24, 2013 8:57 am

vesta wrote: ...Seek good advice and do your own research...


Yikes, vesta, I think if I had been bombarded with such a complex, confusing, but authoritative sounding call to action and condemnation of my healthcare providers and current options immediately after my MS diagnosis I would have totally freaked out!

To Lolls41 (and to all other new posters), like lyndacarol says, "Take a deep breath." There IS time for you to let the diagnosis sink in and investigate your options. And I repeat what I said: "Sadly, there are actually no undisputed "facts" about MS." And that includes vesta's post above. Although there are some suggestions in it that could prove beneficial and worthy of investigation, I think the only part of vesta's post that I can wholeheartedly endorse is the one line I saved from it above. :smile:

I believe in the need for healthy diets and good vitamin levels, but I suggest caution with supplements, which can also be dangerous. I've personally had worse reactions to vitamins and supplements (especially Omega 3s - even Vitamin D) than anything MS has ever done to me!

And if some of the terms and procedures seem unfamiliar, it's because some refer to brand new ideas and potential treatments that have yet to be thoroughly investigated and standardized.

So best of luck to all newcomers to the world of MS! Welcome! Sit down...make yourselves at home...ask us to explain and back up our assertions with scientific research... And don't forget to relax...take deep breaths...and smile...breathe...and smile... You're not alone! :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Diagnosed today and devastated

Postby want2bike » Sun Feb 24, 2013 10:26 am

Why me. It is because you have a gene which is related to MS and something in your enviroment has turned it on. It is important that you listen to the right doctor. Dr. Bergman and Dr. Hyman can explain it to you. The wrong doctor will give you toxic drugs which will make you sick. The Lord helps those that help themselves. If you listen to the wrong doctor the Lord cannot help you. Check out the diet section and get a healthy diet and you can heal yourself.

http://www.youtube.com/watch?v=zGmyUppmt-g

http://www.youtube.com/watch?v=THddIqz9 ... re=related

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&
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Re: Diagnosed today and devastated

Postby Lolls41 » Sun Feb 24, 2013 1:14 pm

Thanks guys for the very conflickting and interesting information. Its sinking in but still cant believe it. Yhe religion thing is a bit offputting but once all the praying to this god that god is waded through the underlying information is very helpful. Not saying im not relugious but information really is whats key. Everyone else here seems to have had years of symptoms but for me ut all cane out a back abd knee injury playing tennis that werent gealing in my mind as leg dragging etc but it was ms all aling. Mine hasnt gone away which is scary part as everyone here are taking about flare ups etc but mine hasnt gone to flare up!
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Re: Diagnosed today and devastated

Postby lyndacarol » Sun Feb 24, 2013 2:33 pm

Lolls – There are many people here with their many, different ideas. We do not always have ideas in common; we continually strive for patience and tolerance. There is LOTS of information here which I hope you find helpful in charting your course of action. Every case of MS is different – different types (benign, relapsing-remitting, progressive,…), different symptoms, on different timetables. Your case will be unique, too.

Working in an emergency room, you will bring a special perspective to our MS conversations. But before you dive into contributing, take euphoniaa's advice to heart: take time to let the diagnosis sink in; investigate your options. Most of all, as she says, "You're not alone!" We are here to answer your questions as well as we can.

And I am sure, in one way or another, in English or another language, we have all asked or thought, "Why me?" You fit in PERFECTLY with us! And with all our inquiring minds, reading and listening for news, I think the future will bring a good outcome. But it is so hard to be patient, I know.
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Re: Diagnosed today and devastated

Postby jimmylegs » Mon Feb 25, 2013 6:33 am

welcome to the forum lol, LOTS of great info here at TiMS. it's a scary time and although it is hard to see a bright side at such a time, i can tell you that it didn't take me long to appreciate the massive learning curve involved. there's a lot of great reading and debate out there.

if a nutritional approach seems plausible for your case, there's all kinds of info available. the abnormalities found in ms patients are well documented. if you are interested, info on specific target levels for specific nutrient tests are provided here (citations still need to be added to the following post, but the levels therein are all sourced from published peer reviewed research): regimens-f22/topic2489.html#p15460
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Re: Diagnosed today and devastated

Postby vesta » Mon Feb 25, 2013 3:43 pm

Hi Jimmylegs
I always understood that one should take 2 parts Calcium to 1 part Magnesium, and since you are such a fan of Magnesium, how should it be dosed and in combination with what? Thanks
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Re: Diagnosed today and devastated

Postby jimmylegs » Mon Feb 25, 2013 5:42 pm

heya vesta :) not to hijack lol's thread, i have answered you here:
regimens-f22/topic2489-495.html#p205386
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Re: Diagnosed today and devastated

Postby Lolls41 » Tue Feb 26, 2013 4:30 pm

Thanks guys this is all very helpful. Jimmylegs i have or should say started tge paleo diet approx six months ago and find it great. I am doung ut for weight loss but to hear that its great fir this disgusting disease slash condition us great. I have a lot of research to do but where to start! Its weird seeing this disease from a distance at work for years but never really looked into it. Time to change.

Thanks everyone for their very encouraging posts. Ye are making this so much more tolerable to take in and try to understand.

A bug fear i have is telling people. Do people need to know? I have a very large circle if friends and family but i am very independant person who normally does all the organising and enjoy that. Having people look at me with a pitiful face would do my head in!! What should i do though. I have fourteen neices and nephews, five brotgers abd sisters. I know they say its not herediary but you hear if sisters getting it, father daughter etc. is it unfair of me not to firewarn them as such?

Thanks again for support.
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