[KarolH]

Hi Everyone,

I feel like I am loosing the use of my right hand, almost as if it has become lazy and just does not want to work.

Friday both of my legs started cramping very bad from my knees to my toes...almost like a severe charlie horse.

Now, I feel like my legs are becoming very weak and do not want to work either.

When I had the diagnosis of Multiple Sclerosis this would make sense to me but now they have switched the dx to Lupus.

I am so new to Lupus and not educated enough about the disease to know if this is something that can happen with Lupus.

Any insight would be extremely appreciated. I am scared.........and I am not one to scare easily.

What is happening to my body and what do they do to fix this?:sad::worried:

 

[sandy123]

Hi Karol

sorry to hear about your illness,i too am new to lupus but i am having trouble with my legs as well, today i went out for a walk and after a while my legs felt like i was walking through water,i did mention this to my rhuemy and he said it was my hips by lifting one leg up,mind you he did noy even move from his chair to examine me properly.
since being dx in june i worry is it lupus or not and like yourself am finding different things are happening to me.
I think someone more experienced will come along to help you but in the meantime take care.
Hugs sandy

 

[sarah-pearson]

Hi Karol, Sorry i dont have any answers but just wanted to say...please dont be scared. You are not alone, there are lots of lovely people on here that can advise you.
When do you next see your specialist ?
Perhaps you could phone them and try and get an urgent appointment.

I think that you need to see someone.

Take care lov Sarah x

 

[Raglet]

I have a lot of problems with weakness, due to nerve damage. Have you had nerve function tests ?

I don't get cramps though - cramps are muscles, so could it be your muscles rather than the nerves ? If so there are blood tests that will show if lupus is attacking the muscles.

Just to be complicated, I sometimes have weakness that is about my brain not sending the right signals for me to use my muscles properly. But again, I don't get cramps, and I always get damage to my face and speech (sound like I have been on a bender all weekend and my facial muscles on one side are very weak).

Also, you are experiencing symptoms on both side of your body - with me it is always one sided (which doesn't rule out lupus, I am just commenting on that).

APS can also cause one sided weakness through TIA or stroke but again, I have not had cramps with this and the muscles of the face/ speech are generally affected too.

Best thing to do is talk with your doctor - if they see you when you are having what used to be called an MS flare then it will help them to work out what is going on.

feel better soon

raglet

 

[lazylegs]

Hi Karol,

When we spoke in chat you said you had spasticity. It is not uncommon for it to swing the other way, especially since you are taking Baclofen. If the weakness continues you should contact your Neurologist. You may need an adjustment in your dosage. Don't stop it on your own because stopping abruptly can have dangerous side effects.

Usually my legs are so weak I have problems walking. It is not uncommon for them just to give out from under me which is why I always use some kind of aid. The arms are affected less frequently. It has only been recently that I have experienced spasticity. When discussing it with my neuro he said to expect to swing back and forth. I opted for stretching instead of the Baclofen because I am enjoying having a little more leg strength.

Take care,
Lazylegs

 

[lazylegs]

Hi Karol,

I must have been writing while Raglet was posting and I just read her post.

Like Raglet I have problems with the signal from the brain. Nerve damage has also caused muscle atrophy.

Unlike Raglet it usually affects both sides of my body.

There are no easy answers. It is best to check with your doctor.

Take care,
Lazylegs

 

[Blue*Mist]

Hi Karol,
Just my two cents, but when I have leg cramps like that my potassium is very low... do you take a diuretic ? When my potassium is low everything feels off. Just a thought.. Since my mctd diag in Aug. I am very aware of my legs get heavy feeling when I'm too tired... I could be way off.......
Good luck... and feel better...

 

[KarolH]

Have you had nerve function tests ?

Yes, I have had plenty EMG studies. For the arms it shows TOS (thoracic outlet syndrome)...........for the right leg it shows a lumbar nerve root compression, for the left leg it showed something yet I forget what it is.

I get numbness/pins and needles sensation a lot and for me it has ALWAYS been my right side that is weak and effected.

This is something new, different. I think I will be calling the Neurologist tomorrow as I think this is more Neurological then Rheumatological...

Thanks for your reply.:wink2:

I forgot to say that another new symptom is the right side of my face is pins and needles, very strange, and this has been going on for about a month now.

 

[KarolH]

do you take a diuretic ? When my potassium is low everything feels off.

I do not take a diuretic and my potassium was just checked and it is normal.

Thank god something is huh...:rotfl::rotfl::rotfl:

 

[KarolH]

Hi Lazylegs,

It was nice to chat with you the other night.

What is happening to my legs is strange.

It is not like they are going to go out from under me, it is more like the brain is telling them to work yet they don't want to listen...........make sense?

Now I am having pain, not severe, in my feet and ankles too.

I will call the Neurologist tomorrow even though he basically told me he only needs to see me 2 times a year since this is Lupus and not MS...

 

[Raglet]

hi Karol

I am wondering if you have heard back from your neurologist yet ?

Hope you are feeling better

raglet

 

[KarolH]

I am wondering if you have heard back from your neurologist yet ?

Raglet,

Thanks for checking in. No, I have not heard back and I called yesterday morning early. I told them what was going on and also asked them to mail me scripts for refills on my Percocet and Provigil.

Hurry up and wait I guess. Obviously they are not too concerned that I can barely walk.

 

[Surferboy]

Oh Karol, I feel your pain and anxiety

I hope this pain doesn't last too much longer and is nothing to worry about it the long term .

Best of luck

 

[KarolH]

Thanks Surfer.

I just put another phone call through to the office.

They still have not called me back.