I have severe RLS and just been told I’m being tested for Myasthenia Gravis
Has anyone else got this frightening condition please
Myasthenia Gravis: I have severe RLS... - Restless Legs Syn...
Myasthenia Gravis
Written by
Bugsycat
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13 Replies
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I'm very sorry to hear this. I knew a few people with Myasthenia Gravis. I would see them every month at hospital when I had my monthly IV drug infusions for MS. They were having their infusions of IV immunoglobulin.I hope the medical team keep you updated on your treatment options if it is MG.
And if your RLS is still severe and uncontrolled, now might be a good time to sort it as per Mayo Algorithm and get better treatment.
If you do need monthly infusions, sitting still for hours with an IV drip is no fun if you're augmenting on DAs.
Thanks for your reply. A lot of things are adding up. I have chronic urine retention but have a neurostimulator which deals with this except 2 weeks ago I went into retention. I’ve also read that RLS is a side effect of MG
I don't believe RLS is a side effects but RLS is more prevalent in patients with it.
Is your RLS under control?
No it’s not. I’m on a program to reduce ropinarole. Down from 4mg to 2mg daily but given oxycodone whilst doing it. Already on gabapentin for neuropathy
Sleeping better but it’s very bad from noon til 4pm
Oh dear coming off ropinirole is no fun normally and if you have infusions like Joolsg said it will be hard to stay still.
Talk with your doctor to see if that is in your future and if so you might want to speed up your withdrawal to get it over with before then and on to enough gabapentin to control your RLS. My normal advice is to reduce by .25 mg every couple of weeks. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. The oxycodone should help but you may need to increase it especially near the end.
Dr Early believes in going cold turkey but that can really be hard although it does get it over sooner if needed. Although there is a longer recovery period.
Once off ropinirole and your symptoms have settled you may find the oxycodone will control your symptoms. If not increase the gabapentin that you take at night while continuing the amount you are taking during the day for your neuropathy . The gabapentin won't help your RLS much until then.
Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." This is in addition to what you take during the day. The maximum daily amount is 3600 mg. If you are not familiar with it, check it out as it is the bible for treating RLS at Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Obviously discuss all this with your doctor as I know nothing about Myasthenia Gravis.
Thank you so much for all your advice. I’m on 1200 gabapentin 3 x daily and my doctor has put me on iron pills as my levels have remained at 41% for the last 6 months. Although I’m on a waiting list to see a neurologist they’ve been giving my doctor advice.
The eye doctor I saw yesterday says his referral to a neurologist is more urgent but I asked and will continue to ask to be treated as one person.
I’m finding it really hard to believe I may have this but the more I read the more symptoms I have
Thankyou so much
Since you can't increase your gabapentin, at least divide your night time one as I suggested. I strongly suspect that once you are off ropinirole your RLS will be completely controlled by the oxycodone and the gabapentin. Do be aware though that the oxycodone only lasts 4 to 6 hours and if you don't take it that often you can have mini withdrawals.
I assume you didn't mean % when you said 41 as ferritin is measured as ug/L not as a %. TSAT is but 41% TSAT would not require iron supplementation.
On your iron check the amount of elemental iron as it may be different than the mg the of the pill itself. For example a 325 mg ferrous sulfate has 65 mg of elemental iron. If you can't tell, give me the name and the mg and I can tell you. You want at least 75 mg of elemental iron.
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Many thanks. I will take my time going through all the advice as everything is full on at the monute
I have no more advice to add .But huge good luck.I have a friend with MG. She lives a fulfilling life with this difficult condition. You will adapt. Wishing you hope,courage and peace.
Fom what I've read about the condition it's an auto immune disease and the diet least likely to cause auto immunity is the carnivore diet which is limited to meat, fish, eggs and dairy products if tolerated, if cows milk is not tolerated then goats milk is a possibility for some due to it not containing the problematic a1 form of casein.
