Any advice?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Any advice?

Postby cbower88 » Fri Jul 25, 2014 5:33 pm

Ive been struggling with many issues health wise for 5 years now (im 25), ive had 10 surgeries on my abdomen (pelvic area) including hysterectomy, oophorectomy, gallbladder, appendix and multiple lysis of adhesions and endometriosis. Amongst all of this I have been suffering from severe pain in my lower back and hips as well as problems with walking and balance and dizziness/numbness/spasms/loss of leg control for short periods of time, numbness in my tongue, etc. I have been dx'd with many conditions- Endometriosis stage IV, Fibromyalgia, spinal stenosis, interstitial cystitis, ibd, trochanteric bursitis, chronic pelvic pain/pelvic floor dysfunction, insomnia, migraines, anxiety and adhesion related disorder. My doctors now believe that all of this could actually be ms, from things I have read online it doesn't seem like ms would cause constant issues that are slowly getting worse over time or am I incorrect? I have also in the past been on multiple medications (Cymbalta, lyrica, tramadol, elmiron, Lupron, etc) but my body could not handle any of them (had seizure, possible stroke, altered state of mind, memory loss, several hospitalizations, etc.) my doctors believe because my immune system hasn't been able to handle any medications that it could also be a sign of ms as its got a lot to do with your autoimmune system and mine is obviously not functioning correctly. Has anyone had problems like this and it turned out to be ms? I don't know if it makes a difference but I also have two aunts and a great aunt whom all have ms. Any advice or experiences would be greatly appreciated as I don't know what else to do. Thanks, sorry this is so long. (Id also like to note that things like sle have already been ruled out and I have had an mri on my head that showed no lesions but two of my aunts had lesions in their lower spine and not their heads early on in their ms)
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Re: Any advice?

Postby cbower88 » Fri Jul 25, 2014 6:06 pm

There are a few things I forgot to add to my original post, im not really sure if any of it is related but you never know. I am chronically fatigued which im sure isn't helped by the fact that I cant get more than a few hours of sleep a night, I have had problems with gross hematuria and proteinuria plus glucose at times in my urine and had a cystoscopy and kidney biopsy done which showed no problems aside from the above mentioned spilling into my urine (has been + for all weekly for 1yr now). I have also had a ton of tests done with blood work, etc as you could imagine with all the dx's I have. I know nobody can say what is wrong with me but I would just like to know if anyone else has had these symptoms with ms as it just seems unlikely to me.
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Re: Any advice?

Postby THX1138 » Fri Jul 25, 2014 6:53 pm

cbower88 wrote: ...ive had 10 surgeries...

I will just mention something that stands out to me that would be fully worthwhile to check out:
You have had a lot of surgeries. Nitrous oxide is often used as part of the anesthetic protocol for surgeries.
Although hospitals today are using a more advanced anaesthetic machine, these machines still use the same principle launched with Clover's gas-ether inhaler, to initiate the anaesthesia with nitrous oxide, before the administration of a more powerful anaesthetic.
http://en.wikipedia.org/wiki/Nitrous_oxide#Anaesthetic_use

Nitrous oxide deactivates B12.
The Lancet, Volume 353, Issue 9163, Page 1529, 1 May 1999 <Previous Article|Next Article>
doi:10.1016/S0140-6736(05)75143-6Cite or Link Using DOI
Copyright © 1999 Elsevier Ltd All rights reserved.
Vitamin B12 deficiency and nitrous oxide

Martin Mayall a
Sir
Phillip Lee and colleagues (March 13, p 554)1 highlight the danger of giving nitrous oxide to patients who may have unrecognised vitamin B12 deficiency. The number of patients reported to develop neurological problems is now into double figures.2, 3 However, the worrying aspect of this report, from an anaesthetist's point of view, is that nitrous oxide was given for only 65 min. Since many operations last considerably longer than 1 h the implication is that are are putting a substantial number of patients at risk.
How can we best manage patients with potential vitamin B12 deficiency who are about to undergo a general anaesthetic? Haemoglobin and mean corpuscular volume do not accurately reflect vitamin B12 concentrations.4, 5 The investigators comment that serum vitamin B12 concentrations would have been helpful in the case described, but even this test is not entirely sensitive. Measurements of serum methylmalonic acid and total homocysteine are required to confidently rule out a deficiency in total body stores.5 Furthermore, screening every patient would be impractical, whereas limiting testing to vegetarians and those already known to have a disorder associated with vitamin B12 deficiency would inevitably mean missing some cases
Nitrous oxide is certainly not essential for general anaesthesia; therefore, the safest answer is not to use it. However, if anaesthetists wish to use nitrous oxide, an alternative approach is perhaps to give vitamin B12 to all patients perioperatively for everything but the shortest of procedures.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)75143-6/fulltext

Several of your symptoms can be caused by B12 issues.
B12 is extremely safe and inexpensive. B12 treatment is utterly effective for people who have B12 issues that are caught early.
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Re: Any advice?

Postby lyndacarol » Sat Jul 26, 2014 8:53 am

cbower88 wrote:Ive been struggling with many issues health wise for 5 years now (im 25), ive had 10 surgeries on my abdomen (pelvic area) including hysterectomy, oophorectomy, gallbladder, appendix and multiple lysis of adhesions and endometriosis. Amongst all of this I have been suffering from severe pain in my lower back and hips as well as problems with walking and balance and dizziness/numbness/spasms/loss of leg control for short periods of time, numbness in my tongue, etc. I have been dx'd with many conditions- Endometriosis stage IV, Fibromyalgia, spinal stenosis, interstitial cystitis, ibd, trochanteric bursitis, chronic pelvic pain/pelvic floor dysfunction, insomnia, migraines, anxiety and adhesion related disorder. My doctors now believe that all of this could actually be ms, from things I have read online it doesn't seem like ms would cause constant issues that are slowly getting worse over time or am I incorrect? I have also in the past been on multiple medications (Cymbalta, lyrica, tramadol, elmiron, Lupron, etc) but my body could not handle any of them (had seizure, possible stroke, altered state of mind, memory loss, several hospitalizations, etc.) my doctors believe because my immune system hasn't been able to handle any medications that it could also be a sign of ms as its got a lot to do with your autoimmune system and mine is obviously not functioning correctly. Has anyone had problems like this and it turned out to be ms? I don't know if it makes a difference but I also have two aunts and a great aunt whom all have ms. Any advice or experiences would be greatly appreciated as I don't know what else to do. Thanks, sorry this is so long. (Id also like to note that things like sle have already been ruled out and I have had an mri on my head that showed no lesions but two of my aunts had lesions in their lower spine and not their heads early on in their ms)

Welcome to ThisIsMS, chowder88.

I agree completely with THX1138! And I will go even further and recommend that you read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN and Jeffrey Stuart, D.O. or at the very least watched the following 50-minute video: "Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

This 50-minute documentary featurers Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O.; Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

Many of your symptoms are listed among the B12 deficiency symptoms mentioned in the film.

To answer your specific question: "I have read online it doesn't seem like ms would cause constant issues that are slowly getting worse over time or am I incorrect?"… MS has several different forms, as you may have read. In one form, symptoms begin and have periods of remission when symptoms improve or go away altogether only to return or worsen later. In another form, symptoms begin and never let up – and even get worse over time. So your doctors are correct that it could be MS. Or not. Since MS is a diagnosis of exclusion, it is good that they have begun to rule out other likely possibilities, such as SLE.

Since you stated that "any advice or experiences would be greatly appreciated," I offer you mine: Be sure that the possibility of a vitamin B12 deficiency has been thoroughly ruled out (the B12 blood test alone is not adequate to dismiss the idea of a deficiency – an elevated homocysteine level, an elevated methylmalonic acid test level, even a high MCV number, which is done in a complete blood count, will all indicate a B12 deficiency). Taking any B vitamin supplement before testing will skew the results. Request copies of your test results for your own file.

As THX1138 has stated:
Several of your symptoms can be caused by B12 issues.
B12 is extremely safe and inexpensive. B12 treatment is utterly effective for people who have B12 issues that are caught early.
This is, at least, the first area to investigate. We wish you all the best.
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Re: Any advice?

Postby want2bike » Mon Jul 28, 2014 6:31 am

You are going to have the figure out what is wrong with you. The doctors job is to give you drugs for the rest of your life and the drugs just make you sicker. Read as much as you can and decide for yourself how to treat the disease you have. All diseases are caused by too many toxins in the body and not enough nutrition to get rid of them. You have to identify the toxins you are exposed to and get rid of them. This is done with the food you eat, exercise, proper sleep and prayer and meditation. Dr. Bergman does a good job of explaining it. Your health is the result of what you have done to your body.

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

Postby NHE » Mon Jul 28, 2014 2:29 pm

want2bike wrote:All diseases are caused by too many toxins in the body and not enough nutrition to get rid of them.


This statement is simply false.

Cystic Fibrosis
Tay-Sachs
Down Syndrome
Sickle Cell Anemia
etc...
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Re: Any advice?

Postby want2bike » Mon Jul 28, 2014 5:51 pm

I wasn't considering the genetic defects as a disease. It is possible to damage the body beyond repair. If you want to get well you should do everything possible to reverse disease. People with MS were healthy at one time. I would like to believe you can be healthy again. I know the doctors tell us there is no cure but it is a lie. People do get well if they do the right thing. It would be so sad to feel there is no hope. We all have a doctor inside us which is our immune system. People with MS or any other autoimmune disease have the immune system attacking the body. That is because there are bad things (toxins) in the body which the immune system is attacking. If we can get these toxins out of our body we can get better. Good nutrition helps the body repair itself.
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Re: Any advice?

Postby DougL » Tue Jul 29, 2014 3:30 am

want2bike wrote:I would like to believe you can be healthy again.

now i understand all of your posts.

kudos for the attitude but some of your posts are not only wrong but the info you present can be harmfull.
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