When to call the doc or ms nurse?

[Andipw3]

Hello.. I'm still awaiting the copaxone. In the meantime I have symptoms here and there. But last night I awoke to my right leg feeling numb and a few moments of a feeling like I couldn't move it. I settled myself and fell back asleep. Today my right leg feels weaker. I can walk and move it ect.. But I notice the difference. When do you generally call the doc? This is a new symptom . I've had a couple new ones. I just don't know when to call. Do you typically wait until there's a clear disability?
I hope there was no spread to my spine. My initial MRI showed only brain lesions.
I sure pray copaxone will work for me! I hope to get on it soon. Maybe it will stop these new symptoms.

[Andipw3]

Hi! Well.. I think like Kyle explained to me clarity is important. So what I mean is my right leg has a significant FEELING of weakness as opposed to my left leg. So functionally I'm able to get along, but the feeling of weakness is always there. This is new and lasted about 2-1/2 days.
The night episode was a strong feeling of tingiling/ numbness in my right leg, in addition, I went to move my leg and couldn't . Being that the diffrence I felt in the right leg the next day , all day, was a feeling of weaker, I thought there was a connection. I also felt tired and a bit spacey those same 2 days. Today I feel " normal". As in.. Great energy, no symptoms. It was at least s month prior my LEFT FOOT was " purring". Geesh. Both are new to me from the initial onset of the ON. In between are bouts of fatigue/ tiredness. So..?? I suppose I'll just note it and when I'm due in to chat w/ my doc in s couple of months I'll bring it up, I keep a log.. So I have notes! Thx for all the help!!

[essdipity]

There's no reason not to call the neuro or np if this persists or gets worse. You are new to all this and it takes time to sort out what's what. I hope you get delivery of the Copaxone soon. But meanwhile remember that there's also treatment for symptoms. And if you have a significant flare, there's the possibility of IV steroids.

Good luck.
ess

[supermum_ms]

To be honest, i'm actually thinking this may be something as common as sleep paralysis (technical name is postdormital if experienced on waking), which is basically to do with waking during the REM sleep cycle and the normal relaxed muscles state still happening until everything catches up with each other.

Sleep paralysis can be a scary experience but it really isn't usually abnormal for people to wake up in the middle of the night and find themselves unable to move for a few seconds to minutes. It's experienced by just about anyone at sometime during their life time and because you went back to sleep, it just sounds like this may be what you experienced.

I think its more common in children but when experienced by adults it's usually not a sign of there being a problem, it is associated with a few things like poor sleep/habbits/deprivation, medications, some mental health conditions, leg cramps at night, and narcolepsy from memory.

I've learnt that some of the commonly used terms, can mean quite different things to different people, so when you say "I can walk and function, just weaker" .......what makes you think your right leg is "weaker" than the left?

Sorry i'm a tad confused, um i'm not sure how you could still be walking normally and have normal leg function, if one leg is actually physically weaker than the other......

Information:

"Weakness is a decrease in the strength in one or more muscles. In the strictest sense, the medical definition of weakness refers to loss of muscle strength........Weakness may be generalized or may affect one muscle or muscle group exclusively. Diseases of the neuromuscular system, injuries, metabolic diseases, and toxins can all cause of measurable muscle weakness. Signs and symptoms of weakness can include trouble doing daily tasks, such as grooming or writing or problems with gait and loss of balance."
http://www.medicinenet.com/weakness/symptoms.htm

There is such a thing as subjective weakness, which is basically when there is a perception of weakness but there isn't any objective physical/clinical abnormality to corroborate their perceived weakness, it would have to be a possibility when you are saying you'd pass an exam, and there isn't any function or walking issues...

I personally wouldn't be contacting the neuro clinic about anything only hours old, it usually takes me between 3-5 days before i even start wondering and when there has been something new, i tend to think it's a one off situation or i'll come up with alternative explanations or pseudo rather than thinking here we go again, :D but when it's been ground hog day for days on end....

One of the basic guidelines with relapses is that your MS symptoms need to return and or worsen and or you experience something new for at least 24-48 hours and it hasn't been less than a month since your last relapse. Muddying things up are pseudo's, which are not true relapsed because they are caused by things like internal or external temperatures, viral infections, UTI's, over doing it etc etc.  

Cheers.........JJ  

[immisceo]

I guess there's no right or wrong here, but my own personal threshold is if something new shows up for over 24 hours. Weeds out the flukes and is good for my headspace. I was hypervigilant that first year - nearly drove myself batty! After four years, I've never had to ring. The under 24 hour things just get mentioned at my next appointment. I'm on a drug study, so these come around frequently.

[4happygnomes]

Huh, I've had that happen to me on 2 separate occasions this past winter, I could not move my legs in the middle of the night to go to my daughter who was crying from her room.  It was very scary!  I am still in limbo though.  Hopefully you never have to experience that again!

Karen

[HVAC]

If you want to call the nurse feel free. I called the nurse more in the beginning.
It may be something that has been there for awhile but you are noticing it more. I would not worry about spinal lesions they are rarer. I have had MS for 50 years and I have no spinal lesions.

Alex

[Andipw3]

Yes! Thank you. It was a strong feeling of numbness with not being able to move it. However.. I awoke to being able to move it. It feels weaker than the left leg for sure. I can walk and function, just weaker. So.. I don't know.. Does it count?
Yes I do have the nurse. I suppose I can call, but I don't want to if its not a disability thing. I can walk, it's just weaker , if I were to go through an exam, I'd "pass" , therefore no progression. Just a new symptom. I start the copaxone Monday. Crossing fingers!!!!!!
Thank you Kyle. Your very helpful :)
Andi

[kwarendorf]

Hi Andi -

The general rule of thumb is if there is a new symptom or a significant worsening of an old one you should inform your doc. In your case I think it's important to be clear about your new leg symptom. Did it feel like you could not move your leg, or could you not move your leg? If you couldn't actually mover it then I would call. If it just felt strange then I might hold off.

Try not to let your fears of progression gallop away :-) In the beginning it happens to all of us. Every twitch becomes a symptom and sign of impending doom. It's not usually the case :-) You mentioned the MS nurse. They are often a much better point of contact. The Nurse Practitioner recently left my MS practice and it was a very sad day for me. You can get the same information much more efficiently from the nurse rather than insisting on speaking with the doc.

You'll start to have a better understanding of your very own MS over the next few months. Until you do, no one will blame you for erring on the side of caution.

Kyle