Numbness, tingling and Lupus

[Mari]

Hi,

I have SLE and was diagnosed in 99 and for the past month I've had numbness and tingling in my arms fingers, feet, legs that mostly bother me at night. Several times I have woke up and cannot move my whole left side. Which is scarey. Almost like I've had a stroke, but then the feeling does come back after a while and I have a heavy feeling sometimes in my arm for a while. Labs: Sed rate is always high,ANA as high as 1:1280. But both have come down to almost normal since receiving the Solumedrol. I am on Plaqenil and just started Enbrel, I do know some of the side effects of Enbrel are MS symptoms. BUT this was going way BEFORE I started the Enbrel.

The tingling goes on during the day some in my hands, feet and legs, especially if I'm sitting.Sometime my foot and toes will go numb during the day. But this is ALWAYS worse at night. THe only pain I have is in my back when I first lay down at night and then it will go away. I also have very bad feet and leg cramps.

Lupus doctor says it's neuritis/neuralgia from SLE and has started IV Solumedrol. When I get the IV's the symptoms get better and then come back in a few days. He said if I don't receive the Solumedrol then this can cause permanent nerve damage. Sometimes also my balance is off, but that don't happen that often.

I also was put on Neurontin 200 mg twice a day by a neurologist that did no further testing and does not think I need the prednisone. I also have fasiculations in my feet and legs that has been going on since 1992, but they are not worse. I take Klonopin at night for that. Also was worked up that same year with EMG's, spinal taps,etc. from the neurologist since then. No futher testing from him since that time. The fasciculations were ruled as begnign.

I do not like to take Solumedrol unless it is necessary. Lupus doctor says this can take 2 months-2 years to get under control and if it's not then I it can be permanent.

Can you have MS and Lupus both? Or does this even sound like MS symptoms. Do I need any other tests?

Sorry this is so long and thank your time.

[CCF Neuro[P]-M.D.-RPS]

Dear Mari:

I am sorry to hear about your SLE.  One of the symptoms of SLE can be a peripheral neuropathy-both or one-motor sensory neuropahty.  There is an inflammatory response in the peripheral nerve, due to the SLE.  The use of steriods has been shown to be a good treatment for this.  Although this does sound like the peripheral nerve neuropathy of SLE, it might be a good idea to get an MRI and make sure this isn't cerebral SLE.  I doesn't sound like it as your symptoms are specific.  Yes, one can have SLE and Lupus at the same time, this would be quite rare.  I would not think you have both as your symptoms are a better fit with SLE induced peripheral neuropathy.

Sincerely,

CCF Neuro MD

[wildcat]

It sounds more like Lupus. I am not weak either, I can lift heavy things and work like a man until recently, now I have seizures when I overwork myself.

How much Klonopin do you take for the anxiety. Mine is for seizures and anxiety 10 MG a day. I take Ultram for the pain 2 tabs 4 times a day 50 MG each. I sometimes add 600 MG of Motrin with it. It helps it work more effectively. Lately I have moved to taking 8-10 tabs of Codiene Sulfate each day but when I do I have a tendency not to use nearly as much Ultram.

What's your treatment strategy?

[wolf]

hello again still have no diag. my symtoms are numbness over brige of nose burning all over muscle aches all over ,including joints,my mouth even stings pain is real bad at times, they ruled out all neuro disorders out, saw a rhume , tests  neg .have flushness over my face. sometimes.  was tested for lyme titer, western blot both neg,now they say i may have fibro ,but i am not weak at all ,should i continue and try a treatment for lyme? stuck up in me ,dr,s don,t what to do. went to lahey saw neuro ,no answers. also ihave muscle twitches all over my body, i am on klonipin ,ultram helps some but not the answer,please dr if you or anyone can help me i would greatly appreciate it  thank you.

[franny faye]

I have quite similar symptoms.  What is the function of the IV drug you mentioned?  I have never used it.  I have MS with current horrible neuropathy, only mine is not just peripheral.  I do take neurontin, and found out they have to titrate up the dose (some times up to several grams a day).  If you are taking only 200 mg twice a day, you probably aren't getting enough to be theraputic yet.  But, check with your docs.  They should gradually increase your dose.  I am up to 300 mg four times a day, and they are expecting to increase me in a few days again.  I hope your pain goes away, soon.  Keep posting.  You may encourage others, like me, who are still seeking relief.  No one told me the neuropathy could be permanent if it doesn't go away soon.  I will address this with my docs, as I already have too many other symptoms to face more!  You know what I mean, I am sure.  Good luck!.

[TxLefty]

Hi all!  I spotted a typo in the doctor's response.  I'm sure he meant MS and Lupus can occur together but would be very unusual since, for those of you unfamiliar with the abbreviation, SLE means Systemic Lupus Erythematosis which is the formal name for Lupus.  Thanks again for the service  and I always find reading this site informative.