RLS now instead of dystonia??
I got a phone call today from the MDS office where I'd gone Monday for my first appt. The MDS told me Monday he believed my issue is not dystonia, but is a miscommunication of chemicals between the nerve cells and muscle cells, and that he was referring me to his associate that specializes in this. Now today I was told that my ferritin level is very, very low and so now he thinks my problem is RLS! I specifically asked if RLS could cause my sustained spasms and twisting, and she said yes. No research I am finding supports that. Please weigh in!!!
~Connie~
~Connie~
Replies to This Discussion
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Permalink Reply by Ellen S on -
I am wondering a similar thing and waiting with bated breath for Beka's or someone else's answer... My friend has high iron and a Dx of RLS. Everyone in his family has whatever this is. His father now has completely spastic legs... progressed to that point apparently. Nothing moves at all.
They get curling of ties and feet etc too. To him, the "jumpy legs" (his term) are more like myoclonus - he can tell when it's going to happen, but has no control over it, sort of like the jerking you get when you go to sleep. Sort of like a firecracker. When driving he's banged his knees mercilessly on the dash and steering column. He feels better when he gives blood. Nobody will check on this tho, which angers me. Rrr.
I hope they figure this out for you. I know iron can really affect this stuff. Need to get that ferritin level up. Have they told you what to do for this yet?
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Permalink Reply by Imove on -
Hi Ellen,
They are sending some Mirapex to try and told me to start taking iron too. Can't do the iron --- I have colon inertia, so iron supplements is the last thing I need to take because of that. I can be sure to concentrate on dietary sources though and hope that won't be a problem. Hemoglobin was 11.4 which doesn't sound too bad.
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Permalink Reply by Ellen S on
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Well, this doesn't sound like a long-standing problem anyway, if everything else is good. Is your thyroid off-kilter? Normal iron and low ferritin (storage) often come with thyroid dysfunction. Do you have normal acid production in your stomach? If not, you're probably not going to be able to absorb the iron like you need.
Here's some info I have... I am often anemic myself tho my ferritin is strangely usually okay....
Article: The impact of iron and selenium deficiencies on iodine and thyroid ... Talks about the interdependence of these vital nutrients and hormones.
Dietary Sources:
The best dietary sources of iron are liver and other organ meats, lean red meat, poultry, fish, and shellfish (particularly oysters). Iron from these sources is readily absorbed in the intestines.
Other sources of iron include dried beans and peas, legumes, nuts and seeds, whole grains, dark molasses, and green leafy vegetables. However, iron from these sources must be accompanied by certain nutrients for proper absorption. For example, vitamin C helps the absorption of this type of iron while calcium (including all dairy products), bran, tea, and unprocessed whole grain products block its absorption.
In the U.S., grain products such as breads and cereals are fortified with iron to help increase amount in our diet.
Precautions:
Because of the potential for side effects and interactions with medications, dietary supplements should be taken only under the supervision of a knowledgeable health care provider.
The most common side effect from iron supplements is stomach upset, including discomfort, nausea, diarrhea, constipation, and heartburn.
Although not entirely clear, there may be an association between high iron stores and risk of heart disease, cancer (such as breast cancer), and Alzheimer's disease. Similarly, for those with inflammatory bowel disease (Crohn's disease and ulcerative colitis) the areas of the bowel that are inflamed appear to have higher amounts of iron. This is thought to be because iron acts as a pro-oxidant, stimulating the damaging effects in the body of substances known as free radicals.
Iron overload disease, although most commonly an inherited condition called hemochromatosis, may occur in people who consume excessive amounts of iron over a long period of time. Symptoms include skin discoloration, diabetes, and liver damage, among other potential complications. The U.S. Food and Drug Administration (FDA) has established that taking up to 45 mg of iron per day is safe. However, safety for amounts higher than 45 mg per day is not known. Severe iron overdose occurs when amounts of iron equivalent to 50 -100 times greater than the recommended dietary dose are ingested. Such iron toxicity can lead to destruction of cells in the gastrointestinal tract, which can cause vomiting, bloody diarrhea, and even death. Given the severity of potential adverse effects from excessive iron, supplements should be kept in childproof bottles and out of the reach of children.
Ferrous Gluconate may cause fewer side-effects and is milder on the stomach. Ferrous Fumerate is often prescribed by doctors as it, too, has fewer side effects, absorbs well, and is easier on the stomach.
It’s recommended to take Vitamin C, which helps absorption of iron. At the very least, drink down your iron tablets with orange juice or a drink like Emergen-C. Also taking a mineral supplement can assist the absorption, as can B-vitamins.
What about the constipation I get from taking iron supplements? If you do find yourself with constipation or very hard stools, add Magnesium Citrate as a supplement, taken twice a day, until you find the amount that softens your stool. You’ll know within a few days if the amount you are taking is enough….or even too much (i.e. too much will cause diarrhea).
Intravenous (into the veins) iron, administered in the case of severe anemia in a hospital setting, can lead to headache, fever, swollen lymph nodes, painful joints, hives, worsening of rheumatoid arthritis, and in rare instances a life-threatening allergic reaction known as anaphylaxis.
Possible Interactions:
If you are currently being treated with any of the medications discussed below, you should not use iron without first talking to your health care provider.
Iron may interfere with the absorption of many different medications. For this reason, it is best to take iron supplements at least 2 hours before or 2 hours after taking medications. This is particularly true for the medications listed below.
The following medications may reduce the absorption of iron:
Cholestyramine and Colestipol -- These are two cholesterol-lowering medications known as bile acid sequestrants.
Medications used to treat ulcers or other stomach problems -- Examples of anti-ulcer medications include cimetidine (Tagamet), ranitidine (Zantac), famotidine (Pepcid), and nizatidine (Axid). These medications belong to a class of drugs known as H2 receptor blockers. They change the pH in the stomach and subsequently alter the absorption of iron. It is possible that this effect could occur with other antiulcer medications including antacids and proton pump inhibitors, including omeprazole (Prilosec).
Iron decreases the absorption of the following medications:
Tetracyclines -- These are a class of antibiotics that include doxycycline (Vibramycin), minocycline (Minocin), and tetracycline (Sumycin).
Quinolones -- These are a class of antibiotics that include ciprofloxacin (Cipro), norfloxacin (Noroxin), and levofloxacin (Levaquin).
ACE inhibitors -- These are a class of medications used to treat high blood pressure. Examples include captopril (Capoten), enalapril (Vasotec), and lisinopril (Zestril or Prinivil).
Iron may reduce the effectiveness or blood levels of the following medications:
Carbidopa and Levodopa -- Iron lowers blood levels of carbidopa and levedopa (Sinemet ) but it is unclear whether these changes lower the effectiveness of the drugs.
Levothyroxine -- Iron may decrease the effectiveness of this thyroid replacement hormone. A health care provider will monitor thyroid function closely in those taking iron supplements with thyroid medications, including Armour Thyroid and levothyroxine (Synthroid).
Iron levels may be increased by:
Birth control medications -- Birth control medicines, or oral contraceptives, may increase iron levels, thereby decreasing the need for extra iron. Be careful if you are taking oral contraceptives not to take multiple vitamins that contain iron.
Alternative Names:
Ferrous sulfate
Source: University of Maryland Medical school.
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Permalink Reply by Trudy on -
Hi Connie,
I was just roaming around the site tonight and came across your post. When I was diagnosed with narcolepsy I was also diagnosed with RLS. For as long as I can remember I have 'bounced' my legs. When sitting in a chair, for a long time I couldn't cross my legs naturally without wrapping my one leg around the other in an effort to stop from my leg, usually my right leg, from bouncing. When I was a kid I would lay in bed crying because my legs ached and literally would bounce on the bed(what I know understand as spasm, at least in my case). My parents would come in and rub my legs in an effort to relief the pain. I believe the RLS could be genetic, although I have no proof. On my paternal side of my family, my Grandmother, uncle and my father...along with some assorted cousins...all bounce their legs and have exhibited various sleep disorders. My father was diagnosed with Sleep Apnea soon after I was diagnosed with narcolepsy in early 2000.
Initially my sleep doctor at that time put me on Mirapex. I wish I could remember the exact dosage right now, but I can't. That was in 2004 the doctor doubled the dose when I was experienced continued discomfort during my work day. I've had foot and toe cramps all my life, especially when I was a runner. My cramps became more severe in my feet, toes, calves, butt and then the most painful I've ever experienced; in the ankle bone into my shin. When I went to fill my new script my pharmacist wouldn't fill it out of concern. He gave me my normal dose until he was able to confirm with my doctor that the script was correct. After speaking with the doctor, my pharmacist called me to come in and he gave me the new dose under duress. He told me to be very careful and to consult my doctor if I notice any severe side effects. Within weeks I began losing my muscle control with my extremities. Walking started to be a challenge and my then employer was beginning the process for me to have a handicap parking spot and were purchasing a chair-like apparatus to carry me should we have a fire drill and not have access to the elevator. Eventually I changed sleep doctors and my new one immediately changed my medication from Mirapex to Clonazepam.
I am on a very low dose of Clonazepam at bed time. I don't like taking it because it makes me sleep very deep making waking very difficult in the morning. It's that cyclical effect...take it, it makes me groggy, causing it that much more difficult to stay awake along with the narcolepsy or not take it and have restless sleep.. Now I have the luxury (?) of being unemployed so I can nap when I need but I prefer to be somewhat coherent during the day.
When the movements started that I currently have started, although not definitively diagnosed as Dystonia yet; they reminded me of the movements I was exhibiting when I was prescribed the increased dose of Mirapex. A doctor has never made a connection between the Mirapex and my movements but when I read your post I felt obligated to at least share my experience. So, are my movements because of RLS, Mirapex, Dystonia or an odd combination....I have no idea.
I can't remember if you mentioned this or not but I can feel my legs become more jumpy, or as though if my legs don't keep moving it feels like I want to jump out of my skin. I have no control over it and it will only subside if I take the Clonazepam. It is worse some days than others. Isn't that the story of our lives???
I hope you find relief. I can't say I added anything of substance. Just like with any new medication, pay attention to how your body responds to the Mirapex. Let me know how it goes.
Trudy
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Permalink Reply by cmf3225 on -
To Imove,
I was wondering,what is RLS and what are the correct name and symptoms?If you can provide some info on this,please contact me,cmf3225,at the WeGo Health Discussion Forum.
Have a great day,
cmf3225
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Permalink Reply by Imove on
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hi there,
RLS is Restless Leg Syndrome. Main symptom is a strong urge, almost irrepressible, to move your legs. It most frequently happens at night, and often disturbs sleep. Mirapex is one of the medications for this. It can be caused by a low iron level. I have a low iron level, but I have not had RLS symptoms at all. My problem is relentless muscles spasms body wide, plus my feet, toes and hands twisted into unnatural positions that are just excruciating.
~Connie~
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Permalink Reply by Deanna on -
I am as frustrated as you. I went to Mayo who said, 'here is lyrica, it will stop the pain but you just have small fiber neuropathy. We don't know where but take this pill." A year later, I moved to Shand's. I have been amazed at the neuro and his colleague who specializes in Dystonia. I am not sure if tremors is part of Dystonia. Does anyone know?
What is RLS?
Deanna
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Permalink Reply by Donna Silvers on -
I am sorry your docs are having a hard time diagnosing your problem. I really dont have anything substantial to add, but I did have this one thing to say. With any movement disorder it is sometimes hard to diagnosis because they all mimic each other. I have generalized dystonia, myoclonis and chorea and have had all for many many yrs but I cannot tell one from the other to be honest. I wish you much luck in your diagnosis process.
DONNA
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Permalink Reply by Gwentastic on
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Hi Connie,
My SO has RLS, and it definitely a funny disorder (odd, not amusing). He says his muscles feel very tight, and that causes spasms. I see him stretching his legs quite a bit, and it often happens when he is tired.
I've observed him twisting his legs back and forth in his sleep, bouncing his legs on the bed, and a general twitch in his legs. It's not very comfortable for him. I asked him if 'spasm' could describe some of his symptoms, and he said definitely yes. From what you describe, your symptoms seem pretty par for the course.
He tried Requip (an RLS specific drug) and though it helped his symptoms, it kept him awake all night (which kind of defeats the purpose, as the symptom that bothers most people is how their legs interrupt sleep). The doc then put him on a gentle sedative (lorazepam) to help him sleep through the night. It seems to help a little.
I know RLS can be bothersome, but now luckily there is treatment. I hope this can give you some peace of mind, even if it's just a little.
Best wishes.
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Permalink Reply by Imove on
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Gwentastic - thanks for your thoughts and input. The dr decided is isn't RLS after all - I think he was shooting in the dark with that diagnosis because my symptoms go beyond twitching & spasms in my feet & legs. For example, I get terrible cramps in my abdomen and hands too and sometimes in my neck and even jaw - none of that is part of RLS. Obviously all my symptoms don't fit RLS, but I think drs feel they've let the patiet down or that they've failed somehow if they can't give some kind of answer. He gave me Mirapex and sent me on to another dr all in the same visit.
But thanks for your thoughts.
~Connie~
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