Not sure I want a diagnosis

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

Not sure I want a diagnosis

Postby justaskin » Thu May 24, 2012 1:43 pm

Hello,
I am a 42 yr old woman who has been undiagnosed for over 3 years now. My diagnosis' has been all over the board, from TIA to "all in your head". I really DON'T want a dr.'s diagnosis right now, because my husband is close to retiring and I don't want to carry an "existing condition" over to another insurance. If I have MS, I have MS.......not much can be done for it when the symptoms are as mild as mine anyway........so here it goes....what do YOU GUYS think?
3-4 years ago, I had a massive headache in lower back of my head at 4am. Unusual place for me, cause I get migraines all the time. I took my migraine meds nonstop, they wouldn't calm the pain, i got dizzy and nausous <did i spell that right?< , tried to throw up. started to panic, but held on anyway. By 1pm it lessened. I felt weak and exhausted for the rest of my Saturday and Sunday. Most of the 2 days I kept getting "electrical" sensations running from the top of my head down to my fingertips. I thought I had overdosed on my midrin and wrote it off as such. The fatigue those 2 days was immense! At the time I was working at a busy hardware store. Well come monday, clerks were late, store was full, and as manager, I manned the register and answered phones - that wouldn't quit! I started to feel my face slightly numb on the right side, thought - huh, I reeeeaallly took to much medicine Saturday! I then started to forget how to use the hold button and page button on the phones. I couldn't put words together. So I called our local health clinic, told them my face and arm felt weird. The clerk asked which side, so I raised my hand to the phone. She asked me to come in ASAP, so I did. I ran a gauntlet of Doctors 2 weeks later (hard to get a specialist in this area): Neurologist, Hemotologist and I can't remember the other. All came back with the same, not sure-maybe it was a TIA. The Neurologist saw 4 or 5 spots on my brain, could have been due to past migraine (they were on the right side of my brain, but symptoms were on right side also). Said I could do a spinal, but there is a 10% false positive for MS. Being that my back always hurts, didn't wanna do that either. But I think an "active" lesion, shows bright on an MRI and mine showed up as "past" spots. SO anyway, since then I've had MAJOR "stupid" moments......can't think of words, especially descriptive ones!..........my legs hurt in the evenings, when I'm TOO relaxed, I get "restless" legs. They feel "itchy" at night, when going to bed, and ache as if I were a hundred years old when I get up in the morning. I've had a bout of Pleurasy and some other lung irritation. Family history: Daughter with Lupus. Paternal Aunt with Lupus. Maternal: 1st cousin with Rheumatoid Arthritis, 2nd cousin with MS with his brother (also my 2nd cousin) with Lupus. I've been checked once for Lupus, when I wasn't having any symptoms - came back zero. So I'm thinking, MS - Lupus - or all in my head too! If it's either, I can live with them. Just wish insurances weren't so ........... :) What do you guys feel? Are these MS symptoms? I haven't had such a "electrical" feeling since, but the fatigue is getting worse, especially around 3pm! and the "cloudy head" is getting to be more often than not.
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Re: Not sure I want a diagnosis

Postby FLJhawk » Thu May 24, 2012 2:39 pm

Possibly they are due to MS, but it is not clear if it is that or something else.

I understand your concern about insurance. But, there are things you can do. Certainly, get on a good MS diet. Many people find relief with a change in diet and by taking a variety of supplements, especially Vit D3 (which also means you have to take Magnesium and zinc and other things). You might also also see about getting a prescription for LDN and even check into CCSVI. So, there are some things you can do while you are in limbo land and still avoid the dreaded MS dx.

Good luck!
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Re: Not sure I want a diagnosis

Postby justaskin » Thu May 24, 2012 3:18 pm

what is LDN? I heard about CCSVI, but am sure I can't afford it. (Thats a "fixing" of stenosis on the veins going in to the brain, right?) My insurance has started making us pay 10% of all our bills after meeting deductibles on top of that. I will try the Vit d3/mg/zn. My friend, who has very similar symptoms has started feeling better with d3 and some kind of meds (I forget to ask her the name of it). THe diet I seem to keep noticing is gluten free, right?

Thank you!
Will this diet help the fatigue? That's what is driving me nuts as we speak.......I can handle the achey back and legs, but hate being exhausted all the time.
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Re: Not sure I want a diagnosis

Postby NHE » Thu May 24, 2012 4:22 pm

justaskin wrote:what is LDN?


low-dose-naltrexone-f10/
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Re: Not sure I want a diagnosis

Postby lyndacarol » Thu May 24, 2012 6:22 pm

Welcome to our community here at ThisIsMS, justaskin. Your symptoms could indicate MS, especially with your family history of so many other autoimmune diseases. But your symptoms may be due to any of several other problems.

If MS is the root of the problem, I concur with the suggestion of starting with diet – it is the easiest, the least expensive, and has helped many people; for example, you might be interested in the dramatic story of Dr. Terry Wahls (http://www.TerryWahls.com).
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Re: Not sure I want a diagnosis

Postby FLJhawk » Thu May 24, 2012 8:24 pm

Some people have some degree of success with various diets, and some don't. With something like MS, you never really know what is working as you never know what the disease would have done had you done things differently. Some people will think a particular action is what is causing their disease to get better/worse, but it might have done the exact same thing regardless.

Diet may or may not help your disease progression, but a good diet should make you feel better and it give you some sense of control of things.

There is lots of info about LDN here and out there on the web (not all of it necessarily true). I don't think there are any real studies that show it actually works for MS, but as with CCSVI, there are lots of people who think it helped. Naltrexone is cheap, especially if you make your own LDN from the 50 mg tablets that naltrexone comes in, or it can be compounded into the dosage you want by a compounding pharmacy. The trick is getting your doctor to prescribe it, as it is normally prescribed to people addicted to narcotics! You can do your own research and then ask questions on the appropriate board, or even come back here if you are unsure where to go. Oh, another thing to try is malic acid. Some say this is similar to a new MS drug that may come out later this year and might be nearly as effective at, of course, a tiny fraction of the cost.
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Re: Not sure I want a diagnosis

Postby jimmylegs » Thu May 24, 2012 8:30 pm

hi justaskin :) welcome to the forum. in my experience monitoring nutritional status via bloodwork has been key. if you can get tests for serum zinc, magnesium, and 25(OH)vitamind3, it can help you figure out how you might need to tweak your diet and re supplements, how much you might need to be taking of each, for best efficacy.
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Re: Not sure I want a diagnosis

Postby justaskin » Fri May 25, 2012 9:36 am

THANK YOU EVERYONE! I understand that MS and Lupus are hard to dx because everyone has different symptoms. I had noticed on someone elses posts that they had massive headaches like I had, and makes me think MS (My headaches have changed from Migraine - slow progressive excruciating pain behind an eye to the back of my head- to massive pain in one spot, usually in the back of my head which I keep getting)

But then the fatigue and morning stiffness in my legs is lupus like also. (along with major heartburn and dry mouth/eyes.)

I'm gonna try the supplements.

Another question tho....Isn't MS an auto immune also? So wouldn't the zinc boost the immune system, thus egging on the problem?
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Re: Not sure I want a diagnosis

Postby jimmylegs » Fri May 25, 2012 2:20 pm

hey there, try the tests first if you can. and consider diet mods in conjunction with any supplements - they're no replacement for healthy, whole food choices, just exactly what they say they are - 'supplements' to diet.
to oversimplify, the immune system has 'attack' signals, and 'stop attacking' signals. you can boost the 'stop attacking' side of a broken immune system that is doing too much of the attack biochem.

Clinical, immunological, anti-inflammatory and antioxidant roles of zinc
http://www.ncbi.nlm.nih.gov/pubmed/18054190

The essentiality of zinc for humans was recognized only 40 years ago. Zinc deficiency was suspected to occur in Iranian patients with growth retardation, hypogonadism in males, hepato-splenomegaly, rough and dry skin, geophagia and severe iron deficiency anemia. Later we documented zinc deficiency in similar patients in Egypt. The diet of these patients consisted of mainly cereal proteins which contained high phytate and this led to decreased availability of iron and zinc. These patients had severe immune dysfunctions, inasmuch as they died of intercurrent infections by the time they were 25 years of age. In our studies in experimental human model of zinc deficiency, we documented decreased serum testosterone level, oligospermia, severe immune dysfunctions mainly affecting T helper cells, decreased serum thymulin activity hyperammonemia, neuro-sensory disorders and decreased lean body mass. The basic mechanisms of zinc action on immune cells have been reviewed in this paper. Our studies showed that the activation of many zinc dependent enzymes and transcription factors were affected adversely due to zinc deficiency. The gene expression and production of Th1 cytokines were affected adversely due to zinc deficiency. Zinc is also an antioxidant and has anti-inflammatory actions. We have reported decreased plasma zinc, increased plasma oxidative stress markers and increased generation of inflammatory cytokines in the elderly subjects which were corrected by zinc supplementation. In cell culture studies, we have observed that zinc induces A20 which inhibits NF-kappaB activation resulting in decreased generation of inflammatory cytokines.
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Re: Not sure I want a diagnosis

Postby justaskin » Thu May 31, 2012 9:59 am

hello everyone,
thank you so much for all of the advice. I think I need to change my intro from "NOT SURE" to "I WANT". It finally dawned on me that MS is progressive, unlike Lupus. But after reading what insurance has done to others on this forum.........argh! I finally figured out HOW to get a blood test for the levels Jimmylegs suggests. I have a gyn. visit in July and being that I haven't run bloodwork on my cholesterol for 2 years, I'm gonna ask for a complete bloodwork and I would like the zinc, calcium, etc... because I'm gonna start a diet and the facilatator recommended to check them first! WHew! I cannot rouse suspicion and I cannot afford to pay for these tests on my own, so I am gonna sneak them in on my annual! I will also get copies and post them as soon as I get them.
Also, I read some on malic acid, which I would really like to try......600mg/TID. What do you guys think? Should I try that dose along with the zinc combo?

ALso, I have 2 ulcers and a hiatel hernia. Will these supplements (ZInc, mg, malic acid, etc) cause stomach upset?
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Re: Not sure I want a diagnosis

Postby jimmylegs » Thu May 31, 2012 2:13 pm

yee ha, glad to hear you figured out how to get some tests! i'll look forward to seeing your results.

sorry i don't have any particular input on malic acid, other than you're supposed to biosynthesize l-malate on your own. personally, i usually just go with optimizing the nutrition, and then the body should be able to get all the enzymes that support malate biosynthesis up and running properly.

zinc can cause stomach upset if you take too much at once. the good news it will kill the h.pylori infection that causes ulcers in the first place. and as for the hiatus hernia, i would strongly recommend adhering to a strict anti-GERD diet. to make sure that magnesium glycinate does not relax your LES, and contribute to GERD symptoms always take it before food, so that it gets pushed into the intestines right away.
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Re: Not sure I want a diagnosis

Postby justaskin » Thu May 31, 2012 2:54 pm

relax my LES?

I am trying to do all I can to stay away from anything that contributes to my reflux, red chile, salsa, corn tortillas - missing those terribly! (I am from New MExico!) and pizza. I was tested for h.pylori before my endoscopy a month ago when they found my ulcers and it came back zero. But its good to know that zinc helps kill the bacteria because my husband has had h. pylori before, so he can take the suplements right along with me!
I am taking notes on your regimen (ftopict-2489) and have bypassed or can't find your Zinc dose, i found it on someone else's post with copper, so please let me know if I'm close. (i'm planning to start all of these by half doses for a week, then up slowly - until i get my bloodwork back)
Zinc 30mg bid
Cu .9mg qd
B12 (methylcobalimin only) 1000-2000mcg qd
D3 5000IU/qd
Vit E 400IU qd
Magnesium Gyconate (I can't find) but the site that suggested Malic Acid suggested to take 140mg of Magnesium Citrate (which should get my bowels squeaky clean! lol - but not a problem if it helps the absorbtion of all these supplements)

and contemplating the malic acid, 600mg/tid (kind of like the idea of having beautiful skin with this one!)

I eat well, i could use more vegetables and fruits, but generally don't eat lots of fried foods. Don't care for milk cause it makes me sick, but i can handle extremely aged cheeses. (Love extra sharp cheddar) So I can see where i may have a vit d deficiency, but living in the southwest, I love the sun. Even though it makes me feel tired and weak after awhile, I'll push it.

looking forward to my supplements!
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Re: Not sure I want a diagnosis

Postby jimmylegs » Thu May 31, 2012 8:45 pm

relax your LES = lower esophageal sphincter. that's what lets the stomach acid up into the esophagus and gives you heartburn. also careful re magnesium forms - i like magnesium GLYCINATE but there is also magnesium gluconate. i have never taken mag gluconate. where are you exactly? i might be able to point you at a mag glycinate supplier.

for zinc i generally take 50mg zinc citrate per day, balanced with 2mg copper. 50mg zinc citrate delivers 15mg elemental zinc. there's also zinc in my multi, and obviously in my diet. plus i don't have a high gluten intake so my zinc status is spared that way too. if i feel a cold coming on i'll tend to add another 50mg zinc citrate per day until it backs off again.

you have ulcers and no h.pylori? interesting i'll have to do some reading.

remember, you want to take a week off all supplements before going to the lab for bloodwork in july.

i'm around if you have any other questions :)
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Re: Not sure I want a diagnosis

Postby justaskin » Fri Jun 01, 2012 10:25 am

Yeah, my 2 ulcers are named after my 2 daughters! (LOL)-kids'll give them to you without H.pylori!

I'm thinking of asking for a b12 shot everymonth, because I KNOW the b vitamins have always upset my stomach if I don't eat a full meal first. (I can ask for one from my gyno for hormonal reasons now....getting older has its perks!)

I live in Hatch, NM, a one horse town. The closest "big city" would be Las Cruces, NM. I am gonna try my health food store there for the magnesium. They have many holistic and RNs working there also, and they special order too. So finding it shouldn't be a problem. I take magnesium hydroxide all the time (135mg in each of my extra strength rolaids), would that work?

Also, I read that ulcers (the medications actually) can cause vitamin deficiency (and anemia) because they coat the stomach, not letting anything absorb. So hopefully my ulcer meds won't counteract my supplements. I'll talk to the RN at the store when I go. Maybe taking everything in liquid form might be my route.
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Re: Not sure I want a diagnosis

Postby jimmylegs » Fri Jun 01, 2012 1:24 pm

okay well hopefully the zinc can sort out the healing in your stomach (see abstract below).

it's good to take supplements with food - watch out for the b12 shots they'll probably be cyanocobalamin. see if you can find methylcobalamin as sublingual strips. you just put it under your tongue and let it dissolve away. it goes straight into your blood through the mucous membrane.

good to hear you'll have an easy time finding magnesium glycinate. magnesium hydroxide is an inorganic form. not one of the organic, more soluble, more absorbable forms.

what meds are you on for the ulcers? the absorption should really be happening in the intestines so not sure the meds coating the stomach will have too much effect.

Serum zinc level : a possible index in the pathogenesis of peptic ulcer syndrome.
Abstract
The present investigation shows a possible correlation between serum zinc level and peptic ulcer disease/syndrome and a plausible mechanism for the finding. Clinicopathological study of patients with peptic ulcer diseases followed by confirmed endoscopic findings shows a significant low serum zinc level, 0.846 +/- 0.15 ug/ ml +/- S.D. (P < 0.001) with an exception of approx. 10% of the patients. To understand the cellular mechanism of low zinc levels in serum, tissue zinc content of gastric mucosa was determined. A significant increased value (P < 0.01) of zinc content in gastric mucosa of patients with peptic ulcer diathesis was noted. Carbonic anhydrase, a major zinc containing enzyme was also determined in erythrocytes. However, no change of erythrocyte carbonic anhydrase content was noted. To assess the nutritional status of the patients in relation to the low serum zinc value, serum albumin level was also determined. The low serum zinc level of the peptic ulcer patients is possibly due to the positive shift for the zinc from serum to the gastric mucosa.

just to convert those units for my own understanding.. 0.846 x 0.153 is 12.9 umol/L. waaay down in the low end of the normal range. if they aimed for 18 maybe their ulcers would heal. if you aim for 18, maybe you could go off the ulcer meds. zinc does more for your body than a drug. waaay more!

zinc is known to be important for integrity of membranes. eg intestine, gastrointestinal barrier, blood-brain barrier, etc.

http://www.vivo.colostate.edu/hbooks/pa ... rrier.html
"The gastrointestinal barrier is often discussed as having two components:
•The intrinsic barrier is composed of the epithelial cells lining the digestive tube and the tight junctions that tie them together."

we've touched on those 'tight junctions' here at TIMS before - when there's not enough zinc around, the tight junctions break. in the intestines, the result is intestinal permeability or 'leaky gut'.

one more study:

The protective effect of zinc sulphate pretreatment against duodenal ulcers in the rat
http://www.springerlink.com/content/l27v050g67626255/
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