Updated !! Is this mssounding symptoms?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

rls and nutrition

Postby jimmylegs » Mon Aug 14, 2006 3:19 am

some info on restless legs syndrome. appears to address the high glucose you mentioned also, fg.

Nutritional Influences on Illness

by Melvyn R. Werbach, MD

Restless Legs Syndrome

This syndrome is marked by an unpleasant crawling or aching sensation in the lower legs, between the knee and the ankle, often accompanied by restlessness in other parts of the body, especially in the flexor muscles of the arms and legs. The discomfort appears only at rest and elicits an irresistible need to move the limbs. It generally appears in the evening and early night and may be associated with severe insomnia.1

While, as usual, most of the research is preliminary, the results of studies
investigating the effects of nutrients on restless legs syndrome (RLS) suggest that it has several causes, and that patient-specific dietary changes, nutrient repletion and nutrient pharmacotherapy are often effective treatments.

Dietary Factors

Based on afternoon glucose tolerance testing, many patients with RLS,
particularly if they also have spontaneous leg cramps, appear to have
hyperinsulinism causing functional "hypoglycemia" during testing, in fact,
occasional patients may have an attack of muscle cramps concomitantly with their lowest level of plasma glucose. In an open trial, a group of 350 patients with this type of glucose tolerance curve were placed on a sugar-free, high protein diet along with frequent nibbling and at least one night feeding. The vast majority experienced a prompt remission or, at least, a striking reduction in symptoms.2

Caffeine has been shown to increase subjects' proneness to develop symptoms at lower levels of blood glucose.3 It is therefore no surprise that a xanthine-free diet (no coffee, tea, cola beverages, cocoa) has been reported to be another effective dietary measure - sometimes following a short period of caffeine withdrawal.1

Vitamins

RLS may also be an early neurologic manifestation of folate deficiency, the most common of all the vitamin deficiencies. Often the deficiency is not due to a poor diet, but to a genetic factor causing a folate dependency. While not all RLS patients complain of uncomfortable sensations, folate-deficient patients always suffer from them.4 Since high doses of folic acid (5-30 mg daily) appear to be needed to normalize folate nutriture and induce a recovery, baseline lab testing and follow-up along with medical supervision is advisable.

Vitamin E supplementation has been reported to be effective in several case reports. For example, in a group of 9 patients, 7 had complete relief following supplementation, one had almost 75% relief and one had 50% relief.5 About 300 IU daily appears to be effective, although it may take up to three months for the full benefit to become apparent.6

Minerals

Iron deficiency, which is known to cause akathisia (restlessness) may
theoretically cause restless legs syndrome by reducing dopaminergic and opiate neurotransmission.7 Indeed, in one study, 25% of a group of RLS patients had a low serum iron, while 24% of a group of patients with iron-deficiency anemia had RLs.8 Iron-deficient patients respond well to supplementation. Two months after 15 such patients had begun to take ferrous sulphate 200 mg. 3 times daily, the patients whose serum ferritins were lowest initially improved the most.9

Magnesium deficiency, which is known to increase neuromuscular excitability, can also cause the syndrome.10 Once again, repletion should be effective.

Other Nutrients

The primary role of the neurotransmitter serotonin in the central nervous
system is said to be the modulation and facilitation of skeletal muscle
function.11 If serotonin regulation plays a role in RLS, supplementation with L- tryptophan, serotonin's nutritional precursor, could therefore be of value. While tryptophan supplement needs to be studied further, it did appear to be effective in the treatment of two RLS patients even though they had failed to respond to numerous medications.12

Summary

Evaluate your patient for functional "hypoglycemia," and deficiencies of folic acid, iron or magnesium, and treat as indicated. If these specific
abnormalities are not found, consider trials of vitamin E and L-tryptophan.

Doctor Werbach cautions that the nutritional treatment of illness should be
supervised by physicians or practitioners whose training prepares then to
recognize serious illness and to integrate nutritional interventions safely
into the treatment plan.

Next Month: Nutritional Treatments for Autism

References

1. Lutz EG. Restless legs, anxiety and caffeinism. J Clin Psychiatry 39:693-8,
1978.

2. Roberts HJ, Spontaneous leg cramps and "restless legs" due to diabetogenic
(functional) hyperinsulinism: A basis for rational therapy. J Med Assoc 60
(5):29-31, 1973.

3. Kerr D, Sherwin RS, Pavalkis F, et al. Effect of caffeine on the recognition
of and responses to hypoglycemia in humans. Ann Intern Med 119:799-804, 1993.

4. Boutez MI et al. Neuropsychological correlates of folic acid deficiency:
facts and hypotheses, in MI Botez, EH Reynolds, Eds. Folic Acid in Neurology,
Psychiatry, and Internal Medicine. New York, Raven Press, 1979

5. Ayres S, Mihan R. ÒRestless legsÓ syndrome: response to vitamin E. J Appl
Nutr 25:8-15, 1973.

6. Ayres S, Mihan R. Leg cramps and Òrestless legÓ syndrome responsive to
vitamin E. Calif Med 111:87-91, 1969.

7. Pall HS, Williams AC, Fonseca A, et al. Restless legs syndrome. Neurology
37: 1436, 1987.

8. Ekborn KA. Restless legs syndrome. Neurology 10:868-73, 1960.

9. O'Keeffe ST, Gavin K, Lavan JN. Iron status and restless leg syndrome in the
elderly. Age Ageing 23(3):200-3, 1994.

10. Popoviciu L, Asgian B, Delast-Popoviciu D, et al. Clinical, EEG,
electromyographic and polysomnographic studies in restless legs syndrome caused
by magnesium deficiency. Rom J Neurol Psychiatry 31(1):55-61, 1993.

11. Jacobs BL. Serotonin and behavior; emphasis on motor control. S Clin
Psychiatry 52: 12 (suppl);17-23, 1991.

12. Sandyk R. L-tryptophan in the treatment of restless legs syndrome. Letter.
Am J Psychiatry 143(4):554-5,1986.
jimmylegs
Volunteer Moderator
 
Posts: 8950
Joined: Sat Mar 11, 2006 4:00 pm

Postby amelia » Mon Aug 14, 2006 7:22 am

No Gary had MS about 10+ years before the spinal tap. We know that NOW, not then, because of blindness in his right eye. He welded and went blind in R eye in 1980. Thought he burned it. Got better. Did it again and lost vision again. We always thought that until he went to an optomologist / neurologist. This DR made all the sense in the world when he told us that you burn the retina, not the optic nerve when welding. He had NO retina damage, but the Optic nerve was pale. It is suppose to be pink. Gary had been paralyzed from the neck down over 6 times and had an 8 year remission before the spinal tap. Had the MRI and eye evoked response test during all of this. It took about 15 years to get a definite diagnosis. NO he was not typical. But neither has been his MS.
User avatar
amelia
Family Elder
 
Posts: 309
Joined: Wed Feb 09, 2005 4:00 pm
Location: grenada, ms

Postby sh8un » Mon Aug 14, 2006 10:36 am

Hi again Amelia
so what was the test that was finally positive for MS? The MRI, EVP? When did they decide? BAsed on clinical presentation?
Thanx,
NN
sh8un
Family Elder
 
Posts: 303
Joined: Wed May 03, 2006 3:00 pm
Location: Calgary, AB, Canada

Postby amelia » Mon Aug 14, 2006 11:09 am

Clinical for a year or 2 and then the clincher. He went blind in the left eye from Optic Neuritis. The DR said then that it simply could not be anything else. Now he has some, 5, scars in the lower brain at the stem. When he was 20/400 in the left eye, nothing showed on the MRI. But he got treated with solumedrol and got some of his sight back. That is why Tysabri holds such a promise for us. He is legally blind. Ty is the only thing thus far that has the potential of improving any of his sight.
User avatar
amelia
Family Elder
 
Posts: 309
Joined: Wed Feb 09, 2005 4:00 pm
Location: grenada, ms

I want to give you an update

Postby froggygirl23 » Tue Aug 15, 2006 2:42 pm

Hi :) thanks for all the replys and your time. I wanted to give you an update. I finally talked to both doctors. Both of them didn't want to write him off for more time, they both wanted the other one to do it. That caused a big mess because they also wouldn't write a release for him to go back to work. They said they couldn't. Well, that made me mad because we were getting the run around very bad. I had to make 2 trips to the doctors and several phone calls to get it sorted out. Finally the internal medicine doctor wrote him a release to go back to work. So now at least he won't lose his job (his employers insist on medical release).

2 more big problems...

1.) he's still not any better. (stumbling, real bad weakness in his hands (they have ruled out carpal tunnel) constant dizziness, weakness all over, and numbness in his face/head) So he's going to have to try to work like that and his job is a physical labor job that is timed.

2.) The internal medicine doctor has told me that she has no idea what could be wrong with him. She has only seen him once, and only gave him another blood test that also tested for hepatitis which was negative. No other testing preformed by her!

The neuro orginally told us she thought maybe he had a metabolic problem, that he needed to see an internal medicine doctor to go over him, not the family doctor he had seen to get a referral to her. She said that if that doctor didn't come up with anything that she would do a spinal tap then. But that she didn't want to do that until she was sure it wasn't something simpler.

Ok, so the internal medicine doctor and the neuro call each other and talk... and this is what I understand to be true. The neuro wanted him to be referred to a big city clinic (won't list name) that has better tests and so forth. Well, after calling and visiting the office twice the internal medicine doctor did not say anything about that at all. I found out later by neuro's office. (I'll just say IMD short for internal medicine doctor, although it's probably not the right abbreviation) Meanwhile the IMD office is telling me that he's suppose to see neuro and figure out what to do from there. So I go back to IMD and say "look, neuro told me u was suppose to refer to "insert big clinic" and you haven't said anything about it to us. They told us that it was because the neuro said she was going to refer us (which I don't believe) so I call neuro again and she says no imd will refer. So I say again firmly, the neuro isn't going to refer us. Can imd doctor call neuro and get this straightened out please? so now I'm waiting on phone call from nurse that will probably not happen. :( I am so frustrated.

Why didn't the imd doctor do more tests on him besides blood work? Why are we getting the run around? Now he's going back to work, which is good for money and insurance reasons, but he's very sick, I'm afraid he will get worse working, especially since we don't know what wrong with him. We still know nothing and the imd doctor was a huge dissapointment because she basically didn't do anything to him, and didn't offer any suggestions. AND she didn't say "maybe it's due to stress or some kind of mental issue" she didn't say anything this time. The only thing she told us at first was that it sounded like he got a "virus" and he would get better any day all on his own. (within the next two weeks) which he didn't. She said she would refer to infectious disease if he didn't get better by that time. NOt only did she not refer to infectious disease but she also didn't say she wanted to see him back at any time. Why?

thanks again for your time.
User avatar
froggygirl23
Family Member
 
Posts: 26
Joined: Thu Aug 10, 2006 3:00 pm

Postby amelia » Tue Aug 15, 2006 4:05 pm

Just from my observation, I would get a new neuro. Although there are many things to rule out, MS is high on the list of suspect. Also, he don't sound like he needs to be working. Gary went back to work BLIND and on a walker. He could see a little and was DRIVING! After nearly having a wreck, he decided he could not do it anymore and went on disability. I don't recommend disability right now, but he needs medical attention BAD.
The only thing she told us at first was that it sounded like he got a "virus" and he would get better any day all on his own.

Now ain't that what they always say when they don't have a clue of what is going on!
User avatar
amelia
Family Elder
 
Posts: 309
Joined: Wed Feb 09, 2005 4:00 pm
Location: grenada, ms

Postby Lyon » Tue Aug 15, 2006 4:12 pm

oo
Last edited by Lyon on Sat May 07, 2011 7:57 am, edited 2 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

so what now!

Postby jimmylegs » Tue Aug 15, 2006 4:20 pm

hi frustrated froggy, i agree that it doesn't sound like your hubby should be at work!!

that referral nonsense sounds like a huge pain in the @$$!! can you go to an entirely different group of specialists on a referral from your family doc? someone that will test what you want and who will write the darned release from work!?!

the problem with this kind of stuff is that they don't really know what is going on, that's MHO. even ms is just a list of conditions, and one of them is that you have to be unable to explain why those problems are there! (lesions can't be from any other possible cause) not that lesions are there in your husband's case.

i think some bloodwork for nutritional issues would be very telling here. b12 and iron to start. also it could be very proactive if you get some multivitamins and multiminerals into him. in particular a strong b-complex to start. can't hurt especially if he hasn't been eating much. an omega 3-6-9 would probably really help too.

best wishes!!
jimmylegs
Volunteer Moderator
 
Posts: 8950
Joined: Sat Mar 11, 2006 4:00 pm

Postby froggygirl23 » Wed Aug 16, 2006 12:17 pm

Thank you for your replys! Graves disease was never brought up. Only one disease was brought up ever and that was ms by family doctor. The neuro didn't seem to take to that idea although she's only seen him twice and the second time was mostly for restless legs syndrom.

we are going to get him in to see the orginal family doctor. (that the neuro felt was inadquate which is why we found an internal medicine doctor who then out of the blue refused to see us anymore) This is my plan and you guys can tell me if it sounds good or what to change.

I want to see if they will test for these things:
** free t3 & t4 also t3 & t4, not just tsh
** viatmins & minerals in the blood
** test his insulin by that overnight fasting test
** give him a stress test
** and refer him to the big clinic I mentioned

Now, I'm wondering if a regular family doctor will do those things? Also if anyone knows the technical names for those test feel free to share them. :)
User avatar
froggygirl23
Family Member
 
Posts: 26
Joined: Thu Aug 10, 2006 3:00 pm

Tests

Postby lyndacarol » Wed Aug 16, 2006 5:57 pm

It sounds to me as if you hae a good plan. Those tests should give much important information.

The T3 and T4 tests are a good idea as thyroid disease (two more "autoimmune" diseases--Graves or Hashimoto's-- are quite common. People with one autoimmune disease often get a second or third. By the way, excess insulin is implicated in thyroid disease.

For insulin, ask for a "fasting serum insulin test." A good result will be below 10UU/ML; I bet his will be above 10.

Start keeping a file; ask for your own copy of each test result; best wishes and please keep us informed. People here do care.
User avatar
lyndacarol
Family Elder
 
Posts: 2260
Joined: Thu Dec 22, 2005 4:00 pm

Postby Lyon » Wed Aug 16, 2006 6:20 pm

oo
Last edited by Lyon on Sat May 07, 2011 7:55 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby froggygirl23 » Wed Aug 16, 2006 6:41 pm

Thank you. YOu guys are so great to read my posts, I will help out someone else if I can, it's just right now I don't really know anything. I know most people here go by their experience, which I'm also not looking forward to have but anyways, here's the thing:

I just found out that the neuro is going to refer us to scott & white clinic in texarkana. Excited to learn more, I tried to find information online. No scott & white clinic in texarcana.... googled, found home site, saw locations, called scott & white and asked them. Still not convinced I called information. NO listing there either. So, now I know the closest one is in Waco texas about 6 hours or more drive away. :( Why would she say texarcana?

Now the question is, should I continue to allow my s/o to get messed around by the doctors? Or go back to orginal family doctor that the neuro deemed inadequate for our needs? At least the guy was nice and he listened!
User avatar
froggygirl23
Family Member
 
Posts: 26
Joined: Thu Aug 10, 2006 3:00 pm

more on blood and supplements

Postby jimmylegs » Wed Aug 16, 2006 9:52 pm

"nice and listens" is very important. no matter how adequate your doctor, it's in your best interests to be the best pair of specialists you can yourselves. did i already say you can find good info at pubmed and google scholar? or was that someone else i was writing to... lol i can't recall now.

-the test for iron is "serum ferritin"
-for b12 you can just ask for that: serum b12. (it's also called cobalamin).
-a folate (b9) test is likely worthwhile. the test is RBC folate i believe.
-for vitamin d you ask for serum 25-hydroxycholecalciferol (NOT 1,25dihydroxycholecalciferol) the only reason i know of so far to test 1,25 is to assess kidney function - and there are other ways to do that anyway.
-did you already get the serum glucose result? that would be good to know too. info: http://labtestsonline.org/understanding/analytes/glucose/glance.html

as far as i know any doctor should be able to requisition these tests. if you find a low-ish b12, you can probably figure on low b vitamins across the board.

that site www.labtestsonline.org is a reasonable place to investigate different types of tests. i looked up the thiamine test there and it came up with a lactate test. that is soooo interesting. now i'm looking up the relationship between thiamine, hypoglycemia, insulin etc.

http://www.townsendletter.com/Oct2004/nutinfluence1004.htm
"Thiamine Deficiency
Elevated lactate may also be caused by inadequate pyruvate dehydrogenase activity resulting from a thiamine deficiency ... In that case, the conversion of pyruvate to acetyl CoA is inhibited, fostering its conversion to lactic acid..."

here is a very interesting link about managing blood sugar with supplements: http://www.diabetessymptom.net/news/news_item.cfm?NewsID=190

here are some interesting excerpts which really hit home with me - the info kind of ties in my approach and LC's:
"If you take no other vitamins, you should at least take your B Vitamins... Thiamine is needed for healthy growth and appetite ...Alcohol destroys B1, and even one drink a day can produce a deficiency in some people. Sugar, stress, tobacco, coffee and surgery also destroy thiamine ... Supplementing with biotin can enhance your insulin sensitivity and improve the use of glucose in your liver...Calcium: With magnesium, calcium helps in regulating blood sugar levels, and in metabolizing fats. Hypoglycemics often burn sugar for energy rather than fat, so calcium can help by improving fat metabolism...Magnesium: aids in the digestion of sugar, starches and fats and helps stabilize blood sugar levels...Liver dysfunction is another reason you might want to supplement with magnesium...Manganese is needed for the proper maintenance of blood glucose levels (i need to get this into my program!)...Zinc is needed for proper release of insulin and many hypoglycemics may be deficient...Zinc absorption is reduced in the presence of alcohol, diuretics, cortisone, Tagamet and antacids. Stress causes zinc levels to drop rapidly"

this link was kinda interesting too:
http://www.oralchelation.com/ingred/vitaminb1.htm#3 talks about insulin, hypoglycemia, thiamine.

i think i have convinced myself to bump up my daily thiamine again!! i was taking 300mg a day for a while and now i think maybe it wasn't enough! lol!

anyway best of luck getting it all figured out :D
jimmylegs
Volunteer Moderator
 
Posts: 8950
Joined: Sat Mar 11, 2006 4:00 pm

Postby CureOrBust » Thu Aug 17, 2006 2:10 am

I am not sure what its like in other countries. But here in australia, a GP can only request a test for TSH, and T3 & T4 will only be checked if the reading for TSH is outside normal. Or you can be billed for the test.
User avatar
CureOrBust
Family Elder
 
Posts: 2899
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

can't believe how messed up this is

Postby froggygirl23 » Thu Aug 17, 2006 11:29 am

The neuro is going to refer, they want him to see the scott white clinic (which I had never heard of before) so I called the neuro again this morning to ask for information about the scott white clinic that (she said four times was in texarkana) so I ask for the number, she gives it to me. She also asks if I'm going to call it. I said "uh- I don't know I just wanted to have it". Then I called the scott white number, and it is in temple texas. I ask them if they have a clinic in texarkana they say no. Well, I said the neuro is suppose to refer us there and I need directions how to get there. She said call information, (which I already had) I said I did that and they don't have a listing. She said we don't have one in texarkana. I was like ok. Thanky you. So I call neuro back and said "I called the number to get directions and they inform me there isn't a clinic in Texarkana so I called information and there isn't a listing there either." I said "I'm not trying to be a nusuance, but I wouldn't want her to go through all that trouble of making an apponintment if it's too far to drive" she said "I understand, there use to be one in texarkana and they might have closed it." I said the closest one is in Waco, tX. She said I believe temple is closer, it should only be a 3 hour drive. So while on the phone with her I pull up the map on google, and see that waco & temple are further south than dallas, which is a 5 hour drive and that waco is indeed closer!! She said she will call the scott white number and find out and call me back. How can this get so messed up? Before they told us that they referred to scott white clinic. Well, if that's true then why don't they know where it's at?

You might say well, when they referred before it was in texarkana but has since closed. But the number SHE (the neuro) gave me was the number for the scott white clinic in temple, tx.

Also he has an appointment with his orginal family doctor that he first started seeing when this first started. The appt is on the 22nd.

Oh great... I just called the nurse again, and she said that if we didn't want to travel that far then we would need to get a different doctor to refer us. I said it's not that we won't travel that far it's that we want to know where the closest one is. She said there is one in shreveport LA and that the nurse would call me back when she was done with the patient she was seeing. Well, it's been 2 hours, still no phone call and I looked online and called information once again and there is no scott white clinic in shreveport. Apparently they are only in Texas. Also, the neuro told us that she won't refer to University of Arkansas, because it takes to long to get in. That doesn't add up to me either, since she's telling us she is going to refer us to clinics that do not even exist!
User avatar
froggygirl23
Family Member
 
Posts: 26
Joined: Thu Aug 10, 2006 3:00 pm

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Leonard


Contact us | Terms of Service