Sleep studies

[Sidesteps]

My last neuro suggested that we could do a sleep study to get to try to get the bottom of my twitches and jerking. I was ambivalent about it but after an increase in symptoms and it drawing some concerns I may be having seizures now.  

My symptoms started a little over a year ago with "sleep starts" that happened pretty routinely (every night) when I was wide awake and resting. It was enough of increase for me to mention this at my physical. The progressed to being ALL over my body and then after my "flare" they subsided and developed a somewhat predictable pattern. This is a chronic symptom for me so I experience them all the time but some days I might have less whereas during bad times they increase along with my vision issues.

I'm having a bad couple days and think I'm in a flare again as these have now increased to twitchings that ocurr in a couple muscle groups most days as well as the myoclonus involving moving body parts. I'm having them day/night again and they seem stronger. The movement is so strong it now is moving my entire lower half or my entire upper half during my sleep. I don't think they involve both sides but they could be I guess. The problem is they continue to change that I'm not sure what's affected anymore; I'm sleeping or so relaxed when the majority of these happen in the severe form (maybe become I'm relaxed?) I'm having a terrible time trying to figure out the source entirely. Last night, they were definitely different, stronger and have increased in all areas.

This was one of my top two issues I wanted addressed with my last Neuro but she refused to treat it due to the tremor medicine she just put me on and last night was HORRIBLE, I woke with palatal myoclonus, twitching body parts (small movements) and jerking in my stomach, shoulder area and legs enought to move my entire body.

I feel like I'm starting a relapse with an increase in all of this and feeling the cloud come down over my body. I think I need a sleep study but does anyone know what they are about?  I had an EEG and EMG so I don't understand what else they look for.  

Thank you guys for all your support and answers.

~Barb

[imsolucky]

That's exciting! I'am so happy you have found a potential team player. Let me know how things go for you there and you enjoy this sunshine as well!

[Sidesteps]

Have a good day Imsolucky!!! :) Enjoy the sun that has finally decided to show for us this summer.

[Sidesteps]

Thank you so much for your kind words!!! :) It is good to share with others who are going through the same things. I'm trying not to worry.

I did not realize that we were so close. I have family up North. I did decide to go to Swedish. I am seeing the director there. I reviewed the profiles of the doctor's at UWMC and Swedish. She crosses between both and when I read her profile I loved the fact that she wants her patients to take an active role in their own care. Her nurse confirmed she is a very loving, compassionate and openly approachable doctor. She will go through all the MRI images independently and address them individually with me; yet her nurse was clearly with me that isn't the completely picture. Sounds almost too good to be true. I'm cautiously hopeful. :)

I am sorry you are going through all this as well. It's so hard to not know exactly what's wrong and my imagination gets the best of me sometimes. I am trying to take one step at a time. This new Neuro may not even be interested in a sleep study depending on what she sees. I'm super anxious to meet her though.

[imsolucky]

I hear your pain Barb! I to have classic symptoms and went through Drs. saying I do and Drs. saying I don't! About 18yrs.ago I saw a ms specialist and he said I do and said he saw 3 small lesions on my mri but I had at the time mild symptoms other than severe fatigue and a numb left toe and lower leg which has remained all these years but recently whatever it is has stepped up the game and slapped me in the face and pretty much said you will not ignore me any longer! lol! I have gotten real good at ignoring and denial plus it's easy to do when you keep getting the "well your noggin is fine nothing on the mri" which is great but then what is it and feeling like they don't take you seriously. Oh and the other 3 out of 5 Dr.s I have seen over the years said they don't see anything on the mri so what do you do? I haven't been to a Dr. for symptoms in over 10 yrs. but am now pushing for answers. My GP is waiting to see how I do on Cpap and is hoping some if not all symptoms will improve. I say WHATEVER! Let's just get this process going so we can move on and find out what the h-ll is going on! In the 4 mri's I have had done no one has ever done a spinal mri and most of my symptoms would seem to me spinal related if indeed Dr.Swank is right, he didn't do one back then because at the time didn't feel it was necessary and was confident in his diagnosis. So here we go again! Hey Barb we are pretty close by I'am in Snohomish County near Stanwood. Have you decided to go to Swedish MS Center? I was reading up on them the other night and it sounds like I might end up there depending how things go up here. Just checking out alternatives, got to have a back up plan! Hope your having a good day! P.S. I to have Myclonus as well as restless legs and it is so irritating as well scary when your whole body jerks! I'm sorry you are going through all of this as well but it is so good to share with somebody who knows! Thanks Barb!

[Sidesteps]

Thank you, I like my handle too. It has different meanings to me. ;)

I am not sure she thinks my issues are sleep issues. I don't think she really knows what is wrong with me so it's mostly trying to figure out what is going on. lol ~ I have classic symptoms/signs of MS but no lesions on the MRI that anyone sees and nothing else appears to be wrong with me.  

My last Neuro thought that I might be having periodic limb movement but in looking it up, that's another fancy name for myoclonus. I know I have that. ;) I'll wait this out and if it gets worse make an appointment. I'm just so tired of seeing doctor's. I've seen the doctor's more now than I did when I was pregnant!

[imsolucky]

Hi Barb! I love your handle Sidesteps I wish I could have been more creative but chose Imsolucky because of the 2 precious grandbabies I have and now when I read it it sounds like maybe I'am being sarcastic but I so didn't mean it that way and don't know how to change it! Sorry, on to your question. I had a sleep study done over 2 weeks ago and am still waiting for results. GRRRRRR. Like you my Doc seems to think my symptoms could be sleep related so thats fine and would be great if all these years of on going symptoms were that but I have doubts. What I do know is they can see the different stages of sleep and what our brain waves are doing in each stage as well as nerve function. There is a sleep apnea forum on here that is interesting reading or it actually might be under sleep disorders I don't remember. Wow, just got a call from my GP's office and she said the sleep Doc hasn't generated a report yet so called the hospital and the gal there said it should have been done within a week! Glad to know they're so on top of it while I'am here getting worse! I hope you find answers Barb and speedy ones too! I know this is a frustrating process.