I've had RLS for about the past 10 years and periodic limb movements and wore a CPAP before I lost 75 lbs. I'm still not getting more than 2 - 4 hours of sleep a night and most is interupted. I never feel rested. I'm going through testing for MS...do you know if these neurological symptoms are ever related to MS?
Does that name have to do with your diagnosis? Even if not, it's so appropriate - I chuckled when I saw it. I usually call myself sleepdancer.
About your RLS and PLMD - were you diagnosed at the same time as your sleep apnea was and when was your last sleep study? Are your being treated for the limb movements? Did you have a study after the weight loss to confirm you no long had sleep apnea? Sorry to ask so many questions, just trying to get a clearer picture.
Yes, Jitterbuggin does have to do with my diagnosis...I thought it was appropriate given the circumstances.
My RLS and PLMD were diagnosed with apnea and I had multiple sleep studied. The docs never could get me sleeping and the process was so frustrating and there were only a few docs in my area that treat this and they were not very good. After trying lots of diff meds and wearing a CPAP they told me that they couldn't figure it out, that the CPAP was keeping me from sleeping. I wore it even if I tok a nap and it was like a security blanket so I doubted that was the cause. Basically, they gave up and indicated I was too fat to sleep. I've since lost the weight but haven't had new studies. I see a neuroloogist in a few weeks for my other symptoms and I was going to ask for new sleep studies.
It is distressing to hear how unhelpful your medical professionals have been in the past, and hopefully your new doctor will be better equipped to help you. Treatment of OSA and PLMD is such a balancing act. Often when one of them improves it allows the other to worsen. I've been dealing with this for over 10 years, so I understand the pitfalls. Being methodical gives the best opportunity for effective treatment of both. Just based on my experience, here's my take on it...
#1 Sleep apnea is the first priority due to the health risks. Losing weight is not a guarantee of getting rid of OSA. A current sleep study to assess your OSA could be helpful, but keep in mind if you have frequent PLM arousals, they can obscure OSA. I would be tempted to suggest instead the temporary use of a data capable auto titrating cpap regardless of whether you think you still need it or not. Being certain you have no apneas will better enable an evaluation of your limb movements.
#2 As you are determining your OSA needs (or lack of), get your ferritin level (storage iron) checked (blood test). Some with limb movements have a level in the lower range of normal, but it is recommended that those with limb movement issues keep theirs up in the mid to higher range of normal. Has to do with the use of iron in the brain for movement processing. Talk to your doctor about if you need iron supplements based on this criteria, not just if it's in the normal range. Also ask if supplements like magnesium, calcium, or others might be helpful in your case. Do your part to get good nutrition and exercise to make sure your limb movements are the best you can help them be naturally.
#3 Once CPAP treatment is proven therapeutic (based on data), get a sleep study using your familiar mask and settings. This is the best way to see exactly how disruptive your limb movements are to your sleep. Results of a study done with both untreated can quickly become irrelevant. When both the limb movements and OSA are untreated, they have a tug-o-war as to which will cause arousals. Treating one gives the other the opportunity to fully express itself, then you know what you are really up against. Otherwise it's like shooting at a moving target.
#3 Based on sleep study results, decide if limb movements merit taking medication. Sleep is necessary to life and well being, so sometimes meds are the only option.The most commonly used meds (dopamine agonists) are a two edged sword and you have to decide if they can help more than they can hurt. They can take a while to build up to a therapeutic dose and to determine if they are going to be effective, It should be done with an awareness of possible side effects so you can know when to stop increasing the dose. This meds are known to stop effectiveness after a while, so the process of weaning off (never stop these meds abruptly) and starting the process on another med is more than likely, so it's not for the faint of heart. Once the limb movements seem to be under control, then a sleep study without the machine would determine if the weight loss resolved the OSA.
As far as your concerns about MS, doing all the above will make the waters less murky for the doctor as then they will be evaluating only the residual symptoms. Sleep deprivation does some wild things to the brain. It will be interesting to see how you fare as this progresses.
Wow, thanks for all the help with this. Today I saw my primary care doc for all the test results from the hospital. She told me I didn't have a stroke, but possibly a TIA, but there was no way to confirm it because my tests were negative (I'm not sure what test..) anyway, the coratid artery study showed no blockage, and the echo cardogram showed a mild backwash (my words) near a valve...nothing to worry about she said. She also said I had something like small vessel disease of the brain...basically the smaller vessels start to constrict as they do with age and that could cause some memory problems, but again she wasn't concerned as it was very common (i'm 57 but got the feeling it was a little more advanced than it should be for my age..
As far as all the labwork on all my vitamin/mineral levels...they weren't back yet, nor was my spinal fluid test. So no news on that front. She did mention a small T2 something on the brain mri, which did not concern her. I explained that 2 of the specialists were thinking maybe MS and she right away told me you don't have to have lesions on the brain mri to have MS, it can be on your spinal cord, so the labs will be helpful.
I go back to the neurosurgeon on 2/2, and the neurologist on 2/17 and they are calling me to set up the appointment for the sleep doctor. I agree with what you are saying...especially since I've lost weight, it's time to get this all re-evaluated. I know I am sleep deprived but I am soooooo wound up. It's really hard for me to relax. I may start having 1/2 glass of wine at night to see if that helps....I'll wait for the doctor's recomendation first. LOL
I may have some central nervous system apnea which means I will still need the cpap (or bi-pap) and once I have sleep studies done for the apnea, then I'll worry about the restless legs. I just think if I start sleeping I will feel soo much better.
I want to thank everyone for your comments and suggestions since this is a new journey for me, whether I have MS or not. It's quite a process to even get a diagnosis. I really empathize with what you are all dealing with. I'll keep you posted after the labs come in, but in the meantime, feel free to comment, especially if you know what T2 thing she was talking about on the MRI. I brought my daughter to the exam,,,,maybe she can remember...the doctor was good, but spoke pretty fast and it seemed clear when she told me....then I went and left the office....duh LOL
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