[yrobinson]

I think this is the first message that I have posted to this board. Hello everyone! I just have a quick question. I have recently been diagnosed with CNS Lupus, Sjogren's and Raynaud's. Some days when I get up my legs are so weak they feel like jello. I've almost fallen a couple of times today. It is the strangest thing. Sometimes when this happens they get stronger as the day progresses other times they stay weak all day. Does anyone else experience this symptom? I don't think this is a side effect of prednisone or plaquenil for me because this happened to me before I started them.

 

[Katharine]

Hello Yolanda and welcome

You have posted a few times before but in answer to others so it's nice to meet you

There could be several reasons for feeling weakness in legs and like many of the disease's symptoms that could fluctuate with good and less good days.

I have had various (muscle) weakness issues which at first docs were always wanting to put down to steroid use but I have had them for years and they are, in fact, much improved on prednisolone. They now admit that the meds are not the cause.

Have you mentioned this to your doctor?

Katharine

 

[debatat]

Hi Yolande

I suffer from right sided weakness, initially diagnosed as ms. However now my diagnosis is lupus and sticky blood. I find the weakness really annoying, like you I have no idea of how long it will last. I can fall as one minute my leg will work and the next it wont. For me it was one of my early symptoms, I can still remember joining my friends for my regular bike ride and having to stop as I couldnt turn the pedals after a few minutes. It came on so suddenly and so far has not left.

Other than being told it is a neuro symptom caused by my lupus I have no real answers or treatment. However I am learning that all of my other symptoms that I initially found 'weird' are now being found to have real causes and explanations. So I know that one day soon I will have answers!!!

As Katherine said, it is really important to tell your rheumie about this. Keep a journal, how often it happens, what causes it, and see if you notice a pattern. This will help them.

I hope that it improves for you soon. Sorry I cant be more help.

Deb

 

[lazylegs]

Hi Yolanda,

Leg weakness was one of my first symptoms. Like you mine could vary during the day. I could wake up fine and be too weak to stand a few hours later. A couple hours of rest and I would be as right as rain. Other days my legs would just not hold me.

I suggest you use a cane to assist you with your balance. The last thing you need is to fall and break something.

Has your neurologist suggested any physical therapy or exercises? I found yoga helped with both my balance and strength.

Take care,
Lazylegs

 

[Lily]

Hi and we're glad you posted

CNS lupus loves to do this sort of thing. Of course it may not be related to that it could be peripheral neuropathy causing it. Either way I'm with lazylegs on this one it's important to mention it to your Neurologist. I do hope you see one? If not then the Rheumie also need to know and probably sooner rather than later. The fact that it's off and on is a good sign but left untreated then it can cause some damage.

It's entirely possible if it is related to CNS you will need to go on an immunosuppressant. Azathioprine (Imuran) has helped damp down a lot of my CNS issues and for peripheral neuropathy I take Neurontin to help with the pain. If there isn't much pain associated with it then it's more likely CNS in my experience rather than PN. I used to just suddenly 'fall down' wherever I was when it struck. Thankfully now with a good treatment regime things are much improved and I just get weakness when I'm in a bad flare. It subsides when the flare does.

love
Lily

 

[onetay]

hi and welcome to the site. Yes I have weakness in my legs and in my arms. You are right it is not the pred or the plaqs. I am not sure what it is either we are still looking into it. If I get something from my doctor I will message you and let you know what my doctor has come up with so you can ask your doctor if it might be the same thing and save you some time. In the mean while keep a journal so you can report to your doctor when, how often, and what you were doing when it happened. This will make it easier to tell the doctor and for him to see how often this is happening with you. I hope you feel better soon.

 

[yrobinson]

Thank you all so much for your responses! I do have a neurologist who I happen to have an appointment with on Thursday so I will talk to him about this weakness. It is becoming a little confusing because the rheumy wants him to deal with the "cns" lupus issues (originally my neurologist was thinking MS due to some of my symptoms and numerous lesions on a brain MRI, but reffered me to the rheumatolgist who gave me the SLE and Sjogren's diagnosis) while he deals with the other lupus issues. I don't know weather I am coming or going sometimes.

 

[Lily]

Hi Yolanda,

Most people with CNS Lupus see a Neuro as well as their Rheumy. Mostly my Neuro only wants to know about my neuro related stuff, whilst the Rheumy (well in my case Immunologist) wants to hear all of it.

As long as they communicate with each other and you have one of them taking care of calling the shots on lupus meds it usually works out well. The only meds my Neuro has prescribed are ones for the pain of PN but everytime I go to him he lets my Lupie doc know what's going on. It's the Lupie doc who prescribes things to control my actual disease process. I see both of them regularly.

Good luck and it's handy you have an appointment .

love
Lily

love
Lily

 

[lazylegs]

Hi Yolanda,

The doctors initially thought I had MS also. Further testing ruled out MS.

You said you had brain lesions. Did you get to see the MRI or did the doctor mention the shape of the lesions? In my case the shape and size of the lesions along with a negative Babinski, negative Clonus and no visual disturbances lead the doctors to look elsewhere.

Do you know if you have been tested for APS? The following information might be of some interest for you.

http://www.thelupussite.com/forum/showthread.php?t=71565

http://www.thelupussite.com/forum/showthread.php?t=52667

Take care,
Lazylegs

 

[yrobinson]

I am so very frustrated. I've waited for several weeks to get into see my neurologist. He was running very behind schedule today. I waited an hour and 1/2 to see him for him to basically spend 4 or 5 very hurried minutes with me. I literally had to keep stopping him on his way out the door to ask him about my weakness and headaches and didn't even manage to ask him all of my questions. He said that my legs were not all that weak (he isn't the one trying to walk on them is he?) and that he could add Topamax but that I would find it as sedating as the neurontin that I am already taking. It seems that since my rheumatoligist (to whom he referred me) diagnosed me with Lupus, that he isn't too concerned about anything. He said "glad your feeling better" (who said I was feeling better??? I said my joints felt better but there is a whole lot more to me than joints!)

 

[Lily]

Some Neuro's don't have a very good bedside manner (massive understatement!!) Tell me he at least examined you to check your leg weakness out?

love
Lily

 

[lazylegs]

Hi Yolanda,

You deserved better treatment than that especially after the doctor made you wait so long in the waiting room. Did he even listen when you said you have been falling?

Neurological tests are so subjective. There isn't a true measurement like on a scale or blood test. Your leg weakness may be nothing to him because he may feel even weaker patients most of the day. That still doesn't mean he couldn't have explained how he interprets strength.

Have you been trying to do any exercise to help strengthen your legs? Many doctors neglect to consider exercise as part of the prescription plan. When it comes to muscles it is use it or lose it. I suggest you ask you rheumy what types of exercise would be safe for you to do.

Take care,
Lazylegs

 

[yrobinson]

He had me push my foot against the resistance of his hand. I told him that the strength changed throughout the day. I didn't have a chance to tell him that I have been falling. If I keep having problems, I will call him. Maybe he will have time to talk to me on the phone.

 

[debatat]

Hi Yolande

I am sorry that you didnt get the treatment you deserve at the neuro. I have to say from my own observation that neurologists are the worst doctors for poor bedside manner!! Persevere, you know that something is wrong. I hope that things improve for you.

Deb

 

[lazylegs]

Hi Yolanda,

My doctor tests the strength the same way yours did. They are watching for not only the power behind the push but the endurance also. However as you say that one minute in time is not the entire picture of what is happening.

You should start a journal and jot down the times your legs feel the weakest and what you were doing at the time. Do the same thing for your falls. Also you need to note if you could feel the weakness coming on or if it happened suddenly. In the case of the falling note if you knew the fall was happening or if you just found yourself on the floor. All these things will give the doctor a clearer picture if he takes the time to listen at your next appointment.

Take care,
Lazylegs

 

[onetay]

Yolande,
Ok, I got real mad when I was reading this thread. The doctor did not have time to listen to your problems? I wonder what he would say since he was in a hurry with you that you only paid half the bill since you only got not even half the treatment? You will call him to see if he has more time to talk to you over the phone, Oh honey he would not of gotten out the door with me. And when he said glad you are feeling better I would of asked him is there was something wrong with his hearing? I know some of you might be laughing but i am really upset at this. You were not the one running late he was and if he can't manage his time better that is not your fault. I would be finding me a new doctor that has time to see, talk to me at the visits, and explain things when I don't understand. For the price we pay to see doctors these days he should be giving you better care than you got my dear. Does he think what is wrong with you is a common cold because it isn't and has to be addressed if you are falling and he would know that if he was not been running to the door. I am sorry but it really does upset me to hear something like this.

 

[pollianna]

Hi Yolande, I really feel for you too, my legs are the main target for my immune system. I am pure muscle and the fittest sick person I have ever seen . One minute strong as an ox and the next my legs turn to jelly.

I would write him a nice note. I would say that you realise how busy he is but that in the confusion you didn't get the opprtunity to fully explain your current condition and that you hope that next time he will ask if there's anything else you need to say to him before you leave in order he is best informed. Then let him have it :lol:

I always think letters are most effective as the docs are required to put them in yr file and should something untoward happen due to therm ignoring the content it's there in black and white.....

hope your legs get a bit stronger soon xxP