Desperate For Help

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Desperate For Help

Postby christa1918 » Sun Nov 25, 2012 6:55 pm

Hi, My name is Christa, im 25


I have not been DX yet, but im hoping and praying maybe they will figure this all out... So this is me...\/ :'(



mri of brain With and with out contrast - clean, no visible lesions.
lumbar puncture -normal
blood test all kinds- c reactive proteins high, abnormal compliment serums, lupus ptt high, liver functions go up and down frequently. Lymes neg, they say i dont have lupus either..

symptoms:
( respiratory infections and allergies) are a part of my life.
muscle twitching all over body (limbs , face, tongue, toes, stomach, etc)
muscle spasms all over body
nerve pain (fire like burning in legs and arms, especially toes and fingers, numbness, pins and needles)
nerve pain (stabbing, shooting, jabs electric tearing like pain)
spasms in throat, nerve stabbing pain
sleeping jerks and awake leg and arm slight jerks
stop breathing several times at night
tremors all over sometimes visible sometimes not,
muscle vibrations (even in ear lobes)
odd sensation in neck
i feel fogy and off balance
eyes squint shut from sudden tightness in face and neck.
the pain in legs and arms is very intense and hard to describe.
like electric like odd painful pain in limbs. I have hard time describing this pain but its in legs arms.
Also random eye and ear pain
I have also now had 7 miscarriages. One due to turners syndrome. Assumed to be a fluke.

My doc wants to say all this is from depression, but I was never this depressed until I went to see them after realizing all my random symptoms may not be so random. And there have been times now where i feel so hopeless im just short of ending it all. Which is not normally me, I've never been a selfish person like that.

My fathers mother and sisters all were dx with m/s. I had one primary care doc in my old town agree that i had m/s but my neurologist isnt so sure... I'm in the Hampton roads area of Virginia, if you know of any doctors who can help me , please I'm begging you.
Also if you have any suggestions what to do besides take pain killers all the time , id be grateful...
christa1918
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Re: Desperate For Help

Postby lyndacarol » Sun Nov 25, 2012 8:20 pm

Welcome to ThisIsMS, Christa. I offer you my standard action plan recommendation:

First, you may not have MS at all; it is a differential diagnosis – made by ruling out other possibilities. Your thorough, comprehensive list of symptoms should be very helpful to your physician. Very often, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. Like you, I had "normal" test results initially (my first THREE MRIs showed no evidence of MS). IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS – my personal suspicion is that excess insulin is responsible for many MS (or "neurological") symptoms; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I hope that you are comfortable with your GP or internist, that he is compassionate and enjoys being a "disease detective." A GP can order the tests necessary to rule out some possibilities. Start at the beginning with your symptoms list and with a thorough physical baseline examination including blood tests for your cortisol level (elevated with stress and causing blood sugar to rise), glucose AND insulin levels (these are two DIFFERENT tests – of course, I think the "fasting blood insulin test" is the most important and one of the least expensive tests; I suspect that your level is above the optimal 3 UU/ML; insulin is known as "the fat storage hormone" – your body cannot make fat without insulin), thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). You have made a good start with the CRP test and looking at the liver. Ask for a copy of all your test results for your own file. Since I suspect insulin involvement and resulting insulin resistance in skeletal muscles, this may be part of your muscle spasms. I believe the burning sensation in my feet and legs is actually due to caustic insulin damaging the inside of my blood vessels (and not initially the nerves). I am so sorry about your seven miscarriages. By the way, pregnancy causes the mother's insulin production to increase (and another fact: insulin promotes blood clotting, high blood pressure, high cholesterol, diabetes, and heart disease); was a blood clotting problem or preeclampsia mentioned in conjunction with the miscarriages? In my opinion, "depression" and "a virus" are used too often to explain away a genuine, physical condition.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, since I believe insulin is a major player, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS) – a diet that will not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), remove all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

All the best to you.
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: Desperate For Help

Postby christa1918 » Mon Nov 26, 2012 2:18 am

Thank you for your reply. As I was reading it, you mentioned hot baths and that is something that my body cannot not tolerate. I never thought much of it a few years ago, but I cannot take a hot bath or shower. It causes me respitory distress and severe weakness. If I'm in too long I pass completely out.

My fathers side of the family does have diabetes, so I had several insulin/diabetes related tests done. All normal. The only thing I notice about my blood sugar is that it can stoop low if I don't eat within a reasonable time.

My doctors that I have now side with each other I noticed. My primary care and my neurologist. My pc sent me through the ringer of tests. Everything from allergy panels -which I have food allergies- to infectious desease panels. :( hoping for answers I finally got sent to a neurologist. He has done many tests including in a sleep study with results that I don't fall into a deep sleep, muscle spasms keep me up and I stop breathing alot.

All this I so confusing and frustrating bc I have had so many tests done, I am blessed not to have what I was tested for, but upset because we still have no answer.

As long as my mother and I can remember I always fussed
about being/feeling sick or having weird sensations. In 2006 I felt like I had a stroke. Face was droopy and I'm not sure how to describe it. More recently have woken up several times not being able to feel limbs and randomly throughout the day I will attempt to stand up to go do something and just hit the floor. :( I just don't know what to do anymore. I lost my job due to my illnesses, and I no longer feel safe driving bc of my loss of feeling randomly. All the medical testing and with what little out insurance pays it makes me even more depressed bc I'm a financial burden.

I really don't feel like my doctors, primary and neurologist, are helping me other the prescribing me antidepressants and narcotics. They both are in the same practice/company together and seem to just side with each other and refuse to listen to my prior primary care doctor. -he was the one that originally suggested m/s. the doc now is just like , that's a last resort answer for doctors who can't figure things out. :/

Sorry if this is so choppy, it's 418 am here and I have never been good at writing or expressing my self.
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Re: Desperate For Help

Postby jimmylegs » Mon Nov 26, 2012 7:32 am

hi christa sorry to hear you are going through all these experiences :(

from the nutrition standpoint i will chime in on the symptoms you listed:

for allergy, infections and infertility i would look very closely at zinc status

for muscle twitching/spasms and pain, i would strongly suspect magnesium. low mag status would also be consistent with elevated crp.

as for the apnea, i don't see that all the time and had to look it up. found a relevant study. in newborns yes, but it shows the connection:

Serum Magnesium Level and Sleep Behavior of Newborn Infants
http://link.springer.com/article/10.100 ... rue#page-1
"As early as 1914, Masslow described the occurence of apnea in infant tetany. In this condition serum Mg as well as serum Ca is decreased. The clinical signs are reversible following administration of Ca and Mg (Klose 1914; Dnrlach 1976)."

also fyi my boss who failed to conceive for a year and a half was pregnant in 6 weeks and carried to full term after following my recommendations re diet and supplements, notably zinc and magnesium.

if you want links to scientific research to support my statements, i can provide for anything i said above.

if you can get any buy in at this stage, see if they will run a serum zinc and a serum magnesium test. the results will come back normal and that will be meaningless - get the numbers and units, bring them here, and i'll set you up with the targets to aim for.

if they won't run the bloodwork i can give you a shopping list and a regimen. it's better to be informed re test results from bloodwork, but if you can't get the info, all you can do is try the supplements and see if they work.

re did you have taste and smell abnormalities associated with turners? that would also point to issues with zinc. which has strong links to fertility. looks far less than flukey to me, but i'd have to look more deeply into turners to say that with more fully academically supported conviction.

if you have any questions feel free :)
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Re: Desperate For Help

Postby christa1918 » Mon Nov 26, 2012 11:48 am

I currently take One a Day Womens. I am currently looking for a new doctor who is a little more experienced. Once I do I'll have them pull new blood work. I know they tested me for a b12 deficiency and it was normal. ill look over all my blood work that i have , and see if i have been tested for other deficiencies.


Both my husband and I had dna testing done, and no genetic abnormalities were found.
"re did you have taste and smell abnormalities associated with turners" - what do you mean by this ?
Also my blood work came back on several occasions abnormal on my lupas ptt- but only by .01 i think. they chopped it up to lab error.... also they said i had a clotting disorder but havent given me anything other then heparin shots and baby aspirin. I have no info on what clotting issue i have. :/ Im left with so many holes and unknowns... Im going to a fertility specialist, but insurance does not cover him so i go sparingly. And right now with everything going on with my body id be scared to try again.

Also I failed to mention, I have random fevers. un-Explainable, varied fevers 99.1-104.5.... when they start i feel drunk and stumble a lot and slur my words. I am also very forgetful in general, all the time. I could have just said something, and if you ask me the same thing over again 5 minutes later, i wont remember....

Thank you for your suggestions and help.
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Re: Desperate For Help

Postby christa1918 » Mon Nov 26, 2012 12:13 pm

also the link http://download.springer.com/static/pdf ... a&ext=.pdf doesnt work.... ?
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Re: Desperate For Help

Postby jimmylegs » Mon Nov 26, 2012 4:11 pm

hi again. i can't redo however i got to that full text link. will keep trying :S

one a day women's will have enough stuff in it to augment a healthy diet in a healthy person. if you have tons of health issues, one a day type products don't cut it unfortunately, except as a kind of foundation or base for a more intensely personalized therapeutic regimen.

as for smell and taste stuff, i think the 're' was just a typo. the question is: did you have taste and smell abnormalities associated with turners. since i have seen these problems listed as a possible symptom of turners. and smell and taste abnormalities may be due to poor zinc status.

b12 can be subpar and still come back 'normal' - if you can get the numbers that will be useful...

as for clotting, if they're giving you heparin and aspirin, your blood is too thick, too prone to clotting. there are a wide variety of nutritional blood thinners out there, fortunately. you can eat foods that have a natural balance of vit e and vit k, reduce high vit k foods if they are low in vit e, boost vit e foods, ensure adequate hydration, etc.

i used to be REALLY forgetful and have found that a consistent nutrient regimen has really helped. notably, the zinc component.
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Re: Desperate For Help

Postby jimmylegs » Mon Nov 26, 2012 4:17 pm

i changed the apnea article link above so that it should work. you have to click again once it works, to get the full text pdf.
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