Central FL RLS Support Group meets Sun., 1-10-99 + good info!

[Guest guest]

Hi,

I know we have a bevy of new people and want to invite any to the Central

Florida RLS Support Group's meeting this Sunday, 1-10-99 if they live in the

area!

We meet every 2nd Sunday of the month at Florida Hospital, 601 E. Rollins

St., Orlando, FL 32803 in Barker CD meeting room (just ask for directions at

the Information Desk as you come in the front door) or post to me, or

Jude below.

We meet from 2:00 to 4:00 PM. The hospital usually provides free valet parking

on Sundays so leave the parking to them!

Elaty, M. D., our Medical Advisor, will be speaking to us on the

importance of having our Ferritin Level (can find masked iron deficiency and

when comes up, 20% to 25% of RLS patients who have low level, should be 50 or

above,* symptoms can improve dramatically -- my mother, the RLS patient, is

living proof) Folic Acid and B-12 levels checked and reviewing the medical

journal articles he just received on these deficiencies and how they can

contribute to RLS sympotms.

Hope to meet you Sunday if you live in Central Florida at our meeting! We

have a wonderful group and a Medical Advisor who leaves no stone unturned

trying to find ways to help us including giving up his Sunday afternoon to be

with us most times.

Barbara: sursiliimp@...

: rframe@...

Jude: imacat@...

*Don't take the doctor's offices word it is " okay. " My mother's was 8; normal

was 10-149 -- get a copy of the lab results yourself. Most doctors, who are

experts at RLS, say the Ferritin Level should be 50 or above. What is " normal "

for one is not for others! This is not part of a panel such as SMAC or CBC.

However, your doctor, once you request it be tested for, should be willing to

do it. Tell him there are several medical journal articles linking RLS

symptoms to a low Ferritin Level and/or Folic acid; here are several plus a

post from another Cyperspacer:

Sent: Friday, October 30, 1998 10:12 PM

Subject: Re: RLS and Ferritin Level

Hi,

I've had RLS for several years. When I went to my doctor 3-4 years ago he had

me take a sleep test where they diagnosed RLS. He took a blood sample for

ferritin levels and pronounced them OK at 30mg. 4-5 weeks ago I read on this

board about ferritin and how it should be greater than 50 for RLS victims.

I went to my new Doc and took another test with similar results as the first

test, i.e 30mg. The new Doc insisted that was just fine and I should do

nothing about it, notwithstanding what I read on the net and what I got from

Dr. Levin. Dr. Levin continued to suggest that I take iron pills to get the

level closer to 50. I ignored the new Doc and took Dr. Levins advice.

About 5 days ago I noticed that the RLS was gone. I do not know if the

ferritin level has changed but the RLS has remained dormant since than. I am

crossing my fingers that this is the solution for me. In any event, I would

strongly suggest that everyone check their ferritin level. Maybe there really

is something to it.

IRON STATUS AND RESTLESS LEGS SYNDROME IN THE ELDERLY

Author: OKeeffe ST; Gavin K; Lavan JN

Address: Department of Geriatric Medicine, Beaumont Hospital, Dublin.

Source: Age Ageing, 1994 May, 23:3, 200-3

Abstract: The relationship between iron status and the restless legs syndrome

(RLS) was examined in 18 elderly patients with RLS and in 18 matched control

subjects. A rating scale with a maximum score of 10 was used to assess the

severity of RLS symptoms. Serum ferritin levels were reduced in the RLS

patients compared with control subjects (median 33 micrograms/l vs. 59

micrograms/l, p < 0.01, Wilcoxon signed rank test); serum iron, vitamin B12

and folate levels and haemoglobin levels did not differ between the two

groups.

Serum ferritin levels were inversely correlated with the severity of RLS

symptoms (Spearman's rho -0.53, p < 0.05). Fifteen patients with RLS were

treated with ferrous sulphate for 2 months. RLS severity score improved by a

median value of 4 points in six patients with an initial ferritin < or = 18

micrograms/l, by 3 points in four patients with ferritin > 18 micrograms/l, <

or = 45 micrograms/l and by 1 point in five patients with ferritin > 45

micrograms/l, < 100 micrograms/l. Iron deficiency, with or without anaemia, is

an important contributor to the development of RLS in elderly patients, and

iron supplements can produce a significant reduction in symptoms.

From the Night s Newsletter of April, 1997

WORD FROM THE DOCTORS

THE IMPORTANCE OF IRON IN RLS

" ...Nature does not want iron running freely around the body, so it provides

proteins to which the iron can attach and thus be stored in the body without

causing damage to other living tissue. Ferritin levels are a good indicator of

how much iron you have store and, therefore, how much free iron you have

available to the tissues to be utilized.

(Referring to a patient): I gave her (referring to a patient who suffered

from RLS for nearly six years with quite severe symptoms for the preceding two

or three years -- she had gone to many different doctors seeking help and had

tried the usual remedies...she had been getting no sleep at all by the time I

saw her and was clearly at wit's end as to what to do -- describes my mother

previously almost to the " T " ) iron supplements (iron sulphate 325 mg three

times a day with meals).

By the sixth month, the iron and Ferritin Level were in the mid-normal range,

the pergolide had been discontinued and she no RLS Symptoms. I knew that

treating with iron might improve the RLS, but exactly how much improvement was

even a surprise to me. This case is not an exception. We have found iron to be

low in about 20% to 25% of our RLS patients, and treatment of the low iron

status had important clinical benefits on their RLS.

The relationship between iron deficiency and RLS was first noted by Ekbom in

1960 (Ekbom, KA, Restless Legs Syndrome, Neurology, 1960;10:868-873). He

reported the coincidental finding of low iron levels and the presence of RLS.

He also noted the value of treating iron-deficient patients in improving the

symptoms.

More significantly, O'Keeffe et al. Iron Status and Restless Legs Syndrome in

the Elderly, Age Ageing, 1994:23: 200-203, demonstrated a strong correlation

between symptom severity of RLS and the Ferritin Level: the lower the Ferritin

Level, the more severe the RLS symptoms.

O'Keeffe also demonstrated that if you took patients who had Ferritin levels

of less than 18 mcg/L or between 18 mcg/L and 45 mcg/L and treated them with

iron, there was marked improvement in regards to their symptoms of RLS. The

improvement in symptoms in those patients with 45 mcg/L and 100 mcg/L was less

impressive but still showed some improvement. "

Dr. Levin said that Dr. Earley and the other doctors at Hopkins

suggested in RLS patients the Ferritin level should be a minimum of 50. Also,

if you have a condition such as arthritis, inflammation, or any chronic

illness (besides RLS) exists, it might look artificially high and you might

need to have it tested by other more sophisticated ways of measuring Ferritin

that reflect iron stores, but they are usually not needed. If your level is

high, he also says you won't " rust out " until you get up to levels of >500. No

need to worry.

The medical advisor for our support group suggests having your Ferritin,

Folic Acid and B-12 levels checked (the later two might not be paid for on a

diagnosis of RLS by Medicare, would polyneuropathy, but probably under $100 --

just the way it is until the medical community gets better informed!) and you

might be on your way to many a peaceful nights sleep. These three must be done

separately and are not a part of any panel such as a CBC or SMAC. Below are

some medical journal articles I found on Folic Acid deficiency and RLS. Ran

out room in this post for any on B-12.

Spectacular improvement can take place since your level is at 21 when it goes

up to 50 with lesser improvement noted for over 50. I suggest obtaining a book

at the library or health food store giving the iron and vitamin content of

various foods so you can also start eating things rich in iron. Iron tablets

might best if vitamin C is included, also. Little enough for a restful

night's sleep!

Remember, my mother's RLS symptoms improved by 50% when her Ferritin Level

only modestly increased from an abysmal low of 8 to 13! She is now monitoring

it herself, a bit on the independent side, so I am not sure what it was from

the most recent test. I suspect it has improved even more because she is

rarely up in the middle of the night walking around -- I have turned into a

Night Owl so would know. I walk by her bedroom on the way to the bathroom

occasionally and can hear her mildly snoring or " snoozing " peacefully. Such a

wonderful sound to hear under the circumstances!

Barbara

Neurologic disorders responsive to folic acid therapy

Author: Botez MI; Cadotte M; Beaulieu R; Pichette LP; Pison C

Source: Can Med Assoc J, 1976 Aug 7, 115:3, 217-23

Abstract: Six women aged 31 to 70 years had folate deficiency and

neuropsychiatric disorders. The three with acquired folate deficiency were

depressed and had permanent muscular and intellectual fatigue, mild symptoms

of restless legs, depressed ankle jerks, diminution of vibration sensation in

the legs, stocking-type hypoesthesia and long-lasting constipation; D-xylos

absorption was abnormal. The bone marrow was megaloblastic in only one

patient, and she and one other had atrophy of the jejunal mucosa. The third

was a vegan. All three recovered after folic acid therapy. The other three

were members of a family with the restless legs syndrome, fatigability and

diffuse muscular pain.

One also had subacute combined degeneration of the spinal cord and kidney

disease but no megaloblastosis; she improved spectacularly after receiving

large daily doses of folic acid. The other two also had minor neurologic

signs, controlled with 5 to 10 mg of folic acid daily. Unrecognized and

treatable folate deficiency (with low serum folic acid values but normal

erythrocyte folate values) may be the basis of a well defined syndrome of

neurologic, psychiatric and gastroenterologic disorders, and the restless legs

syndrome may represent the main clinical expression of acquired and familial

(or inborn) folate deficiency in adults.

Periodic limb movements of sleep and the restless legs syndrome

Author: DC

Address: Virginia-Carolina Sleep Disorders Center in Danville, USA.

Source: Va Med Q, 1996 Fal, 123:4, 260-5

Abstract: Periodic limb movements of sleep and the restless legs syndrome are

not diagnoses but rather an indication that there is some CNS disturbance and

are associated with an ever-growing number of conditions. They are very

common, exist in many forms and are often overlooked by physicians.

It is the author's opinion that they are parts of what has been called an

akathisia syndrome in the most severe situations and may include the same

mechanisms that underlie attention disorders, chronic fatigue syndrome and

" sun-downing. " They are likely parts of a syndrome caused by dysfunction in a

complex brainstem center. This center's normal function is to maintain a

smooth electrical template on which discrete neuronal impulses sculpture the

rich repertoire we recognize as sensory and motor function awake and to effect

a smooth " switching " mechanism allowing sleep to occur without motor and

sensory input invading consciousness (awakening).

While the DA-ergic CNS pathways have been thought to be the primary

neurotransmitter involved, the opioids secondary, there is mounting evidence

that the situation is far more complicated, that many neurotransmitter,

including stimulating and inhibiting amino acids, play a part. These patients

agonize with their indisposition but can be helped by various treatments.

Treatment alleviates not only the distress caused by the symptoms but also the

devastating insomnia and excessive daytime sleepiness associated with it.

Folate deficiency and neurological disorders in adults

Author: Botez MI

Source: Med Hypotheses, 1976 Jul-Aug, 2:4, 135-40

Abstract: The restless legs syndrome could represent a folate responsive

disorder in both patients with acquired-folate deficiency and those with

familial symptomatology. Patients with acquired folate-deficiency could be

divided into two subgroups. (i) those with minor neurological signs (restless

legs syndrome, vibration sense impairment and tactile hypoesthesia in both

legs with diminished ankle jerks and a prolonged or assymetrical Achilles-

reflex time) and (ii) those with major neurological signs (subacute combined

degeneration with or without neuropathies).

In some of these patients the classical triad of the malabsorption syndrome

is replaced by another triad, constipation, abnormal jejunal biopsy and

abnormal d-xylose absorption. A low folic serum acid level could induce minor

neuropsychiatric symptoms while an additional low CSF folate could induce

major neurological symptoms in spite of the presence of a normal erythrocyte

folate level and in the absence of frank anemia. Possible further studies are

described.

Folates: supplemental forms and therapeutic applications

Author: GS

Address: gregnd@...

Source: Altern Med Rev, 1998 Jun, 3:3, 208-20

Abstract: Folates function as a single carbon donor in the synthesis of serine

from glycine, in the synthesis of nucleotides form purine precursors,

indirectly in the synthesis of transfer RNA, and as a methyl donor to create

methylcobalamin, which is used in the re-methylation of homocysteine to

methionine. Oral folates are generally available in two supplemental forms,

folic and folinic acid. Administration of folinic acid bypasses the

deconjugation and reduction steps required for folic acid. Folinic acid also

appears to be a more metabolically active form of folate, capable of boosting

levels of the coenzyme forms of the vitamin in circumstances where folic acid

has little to no effect.

Therapeutically, folic acid can reduce homocysteine levels and the occurrence

of neural tube defects, might play a role in preventing cervical dysplasia and

protecting against neoplasia in ulcerative colitis, appears to be a rational

aspect of a nutritional protocol to treat vitiligo, and can increase the

resistance of the gingiva to local irritants, leading to a reduction in

inflammation. Reports also indicate that neuropsychiatric diseases secondary

to folate deficiency might include dementia, schizophrenia-like syndromes,

insomnia, irritability, forgetfulness, endogenous depression, organic

psychosis, peripheral neuropathy, myelopathy, and restless legs syndrome.

Folate deficiency and restless-legs syndrome in pregnancy [letter]

Author:Botez MI; Lambert B

Source: N Engl J Med, 1977 Sep 22, 297:12, 670

Abstract unavailable online.