I'm curious about MS patients and how their doctors came to the diagnosis. Here is a little about me:
I'm a 30 year old female who has spent the last few years with unusual symptoms on/off. Tingling here, leg going numb there, blurry vision, cold feet, fatigue, sensations in my head, random pains and "shocks" in random parts of my body, etc. When I did have these symptoms, I'd attribute them to my allergies, or being tired, anxiety, being diagnosed with IBS etc.
Two and 1/2 weeks ago I suffered from an extreme discomfort/pain in my left arm. It was heavy, numb and very scary. It lasted strongly for the next 12 or so hours and then as the week went by it subsided. The next day, Monday, I made a doctor's appointment with my GP. That week I experienced, extreme fatigue, trouble sleeping, trouble with grasping with my right hand. Cold feet, then burning feet, blurry vision and trouble talking at work. This lasted until about today, almost 2 1/2 weeks. At this point I still have a little tingle or pain here and there, but overall I feel much better and I'm not as tired.
My doctor gave me the fibro test, I passed. He did all sorts of exams in his office and took blood for about everything you can think of and all came back normal (Thyroid, White Blood Cells, Red Blood Cells, Rheumo, Lupus, Etc). Last Wednesday I had an EMG and Nerve Velocity Test. I got the shocks and the needles. They told me it was normal and told me what I didn't have (Carpal Tunnel and Neuropathy). I am now being set up for a sleep test soon.
Of course, I don't want to be diagnosed with anything, but I can't help thinking that is MS. My friend says maybe it's just my anxiety making me ache and hurt. I'd just like to get the testing and diagnosis over with so I can move on to the next step in my life.
I was curious if anyone's testing/diagnosis process sounds similar to this? Did anyone else have to take a sleep test? Does anyone out there with MS have trouble falling asleep, wake up at night, sleep 8-9 hours but still feel very tired?
I guess it's totally possible I have a sleeping disorder. However, from what I've read, MS and sleeping disorders can go hand in hand. I'd really just like to have the MRI at this point and get some answers.
Thanks for reading, :)
I really appreciate anything anyone has to say. It has been a very frustrating time for me the last couple of weeks and I'm just trying to gather info and work through this. Thanks!
Yep, your description sounds very familiar. I am not saying you have MS but your sx are definately such that MS is something that your dr would be looking for, or trying to eliminate.
Since MS is a dx of exclusion there are a lot of tests they have to run before they can start saying you are "probable" for MS. MRI's of the brain and spine is something that for some of us proved to be the final test to confirm our dx.
I didn't have to take a sleep test and I am not sure if MS and sleep disorders are related (you can have more than one problem) but at this point I would do whatever tests your dr suggests to rule out whatever he/she thinks you might have. I do have trouble sometimes falling asleep but is it related to my MS? Idk, I don't think so.
At some point if all the tests come back negative I would think they would order an MRI (they can be expensive so it's often one of the last ones they order) and/or a LP. Stress is often blamed for many of our sx prior to dx. Same old story unfortunately.
Stick with it and push for a dx of some sort! Good luck.
Hi EmmyV. I'm wondering if your GP has referred you to a neurologist at all. That is usually what happens before a diagnosis of MS is seriously considered. Your GP can certainly order an MRI but they often leave that to the neuro as well since they are the experts regarding how the test needs to be done.
The doctor who evaluates you prior to a sleep study is most likely also a neuro (with a sub-specialty in sleep disorders). He should be able to get some idea if your systems are more consistent with a sleep disorder or a disease process like MS. As both tests are very expensive I hope he considers carefully before deciding which offers the best chance of giving you the information you need.
I was diagnosed with obstructive sleep apnea >15 years AFTER my first MS symptoms (and lesion revealing MRI) and four years BEFORE my official MS diagnosis. I believe PwMS are more likely to have sleep disorders. They don't always go together but having one doesn't rule out having the other.
Sleep disorders can certainly cause some of the symptoms commonly seen in MS--just as many other illnesses can. It's worth getting tested for because it isn't easy to self determine how likely you are to have a sleep disorder.
I never would have thought I had sleep apnea. I didn't feel like I was waking up at all during the night. I usually fell asleep quickly and awoke in the morning in the exact same position I feel asleep in. I thought I was sore and stiff each morning because I was sleeping TOO soundly.
I did wonder how I could sleep all night and take a 2-3 hour 'deep sleep' nap every day and STILL threaten to fall asleep while driving to work in the afternoon.The sleep study results showed there was no doubt I was waking up many times each hour and getting very little quality sleep.
I have also had periods of time when restless legs kept me from sleeping, times when I woke up after just a few hours of sleep but was done for the night and times when I woke up early in the morning even though I would have rather slept in. It seems I run to all extremes when it comes to sleeping and/or not sleeping.
I am a little surprised you haven't had an MRI yet. Otherwise, your progress through this process of diagnosing neurological symptoms sounds pretty standand. It can feel very slow and like nobody cares. Way too many of us have actuallly been down the road you are traveling at the moment and have felt the type of frustration you describe. I hope your answers come sooner rather and later.
Thanks for the responses! They are very appreciated.
When I spoke to the nurse the other day she said my GP wanted to wait after the sleep results to see who exactly he is going to send me to. So I will being seeing a specialist, just not sure who.
The sleep center is a week behind in calling me and finally told me yesterday that I should be available before noon today. And it is almost 1:00, no call. And now I can't leave work. So I am very frustrated.
My doctor and nurse are doing an excellent job. Now I just need the sleep center to have a little more organization so I can move on . Whether I do have MS or not, I'm sure glad to get the sleep test. I'm sure I have some abnormal sleeping. I can't fall asleep at night, wake up in the middle of the night to urinate, wake up with muscle spasms and restless leg and my feet get so cold. I sleep 8-9 hours a night and wake up very sore and sometimes so tired I can't drive to work. And after my arm episode two weeks ago I was sleeping all the time or trying to and I was falling asleep at work.
I guess part of me just would like to have the MRI asap. It's expensive, I'm sure. But I'm ready for some answers.
I will send an update after my sleep test. Thanks again for your responses! :)
Do you know why your GP has referred you for a sleep study? I know you mention feeling tired and believing that you sleep too much. Is it possible that you are experiencing fatigue, or perhaps fatigue and tiredness?
Is the difficulty falling asleep a new symptom?
Like Mary above, I have severe sleep apnea. I wasn't diagnosed until about 4-5 months ago but in retrospect, I have most likely had it for very long time. I was so convinced I didn't have it, that I cancelled study appointments numerous times. I finally had the test only to get my docs off my back. Apnea can cause and exacerbate many illnesses so it's important that you follow through with the testing if your insurance will allow you to also have a complete MRI following MS guidelines.
Difficulty falling asleep or insomnia is a sleep disorder too. It can be treated fairly easily. I had that as a child and then up to about 30.
As far as the journey you are on, everyones here has been different with one thing in common. FRUSTRATING!! It sounds like your doc is doing a good job of ruling some of the 'MS mimics' which is good. At some point he/she needs to refer you to a neurologist to look into these things thoroughly!
Just as Mary said, sleep disorders may occur more frequently in people with MS. So, if you can try to get both tests done.
Well took the sleep test last night (at home). All I can say is "exhausting". Usually I wake up in the middle of the night to go the bathroom, or wake up with some spasm, etc. But last night I woke up every hour! That darn flashing light and monitor. I kept trying to get a comfy position. Ha! Just funny how the test helps, yet the process makes it impossible to sleep.
To RedFlame: Overall I'd say the last few years have been the hardest. But when I was younger I didn't have many problems. Nowadays even if my body is exhausted and I'm not thinking of anything, I still lay there. At night sometimes my mind will just race. And then I get burning feet, or spasms or shock pain in my legs. I change positions over and over to get comfortable and it doesn't work. The weird thing, almost every night I'm in bed from 8-9 hours. I listen to an ocean sound to a timer so I usually asleep within an hour, BUT in the morning I'm so stiff. Like I've been sleeping on the floor or in a chair. In the morning a little.... then in the afternoon I just feel exhausted and want a nap. Sometimes I can nap, sometimes not.
And when I do chores or something slightly exerting, I get overheated and very tired. I'm 30! So yes, I have definite problems with fatigue.
I think the most frustrating thing for me personally is the not knowing and how it affects you. My husband is so wonderful, but I know he's a little overwhelmed. He and my best friend say it's stress. And so it could be, but I'll tell you something.... I've not had any "horrible" "all at once" symptoms except right after that pain in my left arm and those two weeks of complete hell. I guess I'm just kind of in a wonderland of thinking "Is this all in my head?"
Ah, I'm just venting now. Thanks for reading.
Have a great weekend :)
I agree. That doesn't sound exciting at all. LOL! My doctor said he wanted to test my oxygen level. There was a little hand held device and the cord attached to your index finger the entire night. There was an oxygen and heart rate screen on the monitor.
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