[tbunny1]

verhere:Hi gang!

Been off the boards for a little bit now with this move from Denver to Philadelphia, and am just now starting to settle in.

Like a true lupie, I wasn't here but two days before I got a "free ride" in an ambulance, and landed myself in the hospital for three days! :stretcher:

When I got home last Saturday, the hubby says "I'm so glad to have you home". I replied "I'm not for sure I recognize this as home yet, I've spent more time in the hospital than in my new apartment!" :lol:

Good news is I really like the hospital we picked out (I did alot of research prior to the move, and we actually based where we would live on it's proximity to the hospital). All the doctors have been wonderfull. This move to Philly may be a godsend for me medically.

Met with my new Nuero on Thursday, and had an EMG test. I get a new diagnosis - yipee! :scaredy: Like I need more! Peripheral Neuropathy .

I have done some research, both on this site and the web, but still am not very clear how this is a result of SLE, and exactly what it's symptoms are.

I would really appreciate anyone who has been dealing with this complication that could share their experience with me.

Thanks! Tracy

 

[Katharine]

Hi Tracy,

I'm glad you have now come out of hospital and can get to know your apartment!

I think peripheral neuropathy can affect people to varying degrees - like most things I suppose.

Mine tends to send my feet (and when it's bad skin on lower legs, moving into upper) kind of asleep. A sort of numb feeling, rather like having cold wet socks on. It is definitely not a pleasant feeling and when it is bad has stopped me sleeping. It also affects my hands. Thankfully it remains relatively mild unless my lupus gets out of control. The other time it affects me badly is driving and when I have to sit with my feet "down", like in a restaurant, as my feet go to sleep then too.

Other than that it also gives me very severe pain as in enough to make you weep when trying to stand on my feet. The soles of my feet have been so sore that even 5 minutes standing was way too much and I couldn't even do any food shopping any more (I'm a quick food shopper - in and out in half an hour). That has calmed down a great deal with medication and I can now do about half an hour before it starts getting painful and even then the pain is bearable if extremely uncomfortable.

I have to be very careful what shoes I wear (though when very bad no shoes help) and have followed diabetes guidelines on how to choose shoes and get bouncy but supportive shoes one size too big. By doing that I avoid my feet going to sleep quite as much as they used to before and when that pain doesn't set in, it then doesn't keep me awake at night.

Of course, all this is hardly relevant if you're not really experiencing symptoms or pain. The main thing is it has to be kept an eye on. There are also different types of peripheral neuropathy...

hope that helps a little,
Katharine

 

[BarbStar]

I have chronic right common peroneal neuropathy. and chronice denervation/renervation of the right gluteus medis. ...

My leg hurts constantly, pain at night is the most severe. My ankle hurts, right behind my knee hurts, and the back of my leg hurts. They are now testing me for lupus...two tests were positive, one test for sjogren's was positive then negative. So they ordered even more blood work.

I had a spinal cord stimulator - if that is offered to you...turn it down, the worst operation in the world and it doesn't work at all.. Then after you have it, you can't have any MRI's and I was told by the surgeon there is nothing else I can do for you because you have that implant...don't don't don't do it!

Any other questions, ask away. I'll answer what I can

 

[Zoi]

Hey Tracy,

Last spring, after a few days of numbness and a little tingling in a few fingers on my right hand my neurologist sent me for an emg of both arms and I was told I had mononeuritis multiplex (i.e. a form of peripheral neuropathy). I was told this meant that multiple individual nerves were acting up at once and that my hand emg showed that both the sensory and the motor part of the nerves was being affected....

Well a couple of weeks later my left hand became numb and my right hand started having motor problems. I couldn't grasp things, had no muscle strength, couldn't even make my first and last fingers meet. Now, I always have a cane on my right hand and I can't leave the house without it and I have a dear dog I walk twice a day, so this loss of function in one hand had left me unable to take my dog for a walk, go to the shop and come back with shopping, hold the mail. It was all rather annoying to say the least. I called my doc immediately and he thought it was lupus acting up so he instructed me to up my pred to 60 mg, begin 2000 mg of cellcept immediately (I had literally just come out of my last cytoxan infusion) and wait. He also said that what happened to my eyes, i.e. optic neuritis, was the same as what was happening to my hands. He went on to explain that peripheral neuropathy could be caused by a lot of things, inflammation caused by lupus being one of them and decreased blood and oxygen flow caused by aps being another. That got me thinking and I called my internist and my neuro and told them and they suggested that if that is the case and since my optic neuritis episodes were aps related then maybe aspirin could help. And it really did! Within about a week of starting 100 mg of aspirin once a day sensation and motor function returned to both hands and they haven't relapsed since. I am still on 100 mg of aspirin on top of my twice a day heparin shots.

The point of that story was that I remember you've been through optic neuritis yourself and that you have aps and even though lupus is most frequently the culprit when it comes to peripheral neuropathy, aps (as it can be particularly sneaky) may mimic the course lupus would follow sometimes and slightly confuse things so it might be worth considering.

Like Katharine already mentioned in her post the main thing for now is of course that you monitor the peripheral neuropathy's progress, since you don't have any symptoms.

:flowery:

Zoi

 

[tbunny1]

Thanks for the insights! I now wonder how many of my symptoms are related to this new condition.

I already take asprin and warfarin for the APS (I've had two strokes, I'm in the warfarin for life club). My GP in Denver started me on Lyrica for sharp electrical pains that went shooting down my forearms. I think the Lyrica could have been hiding many symptoms up to now.

This nuero I was referred to is considered an expert in rheumatic diseases and their affect on the CNS - wow! I am scheduled for two MRI's and a whole host of blood tests next week.

After the holidays, I'm scheduled for some crazy kind of EEG. They will glue the electrodes to my head and chest, hook me up to a portable recorder, and I get to wear the thing for THREE DAYS! Better get all my shopping done, because there is no way I will be leaving the apartment until those things come off!

Keep the insights coming - it all helps! I'll try to post a pic of my space man outfit later on this month.

Be Well everyone, and Happy Holidays!

 

[Douglas]

Peripheral neuropathy. My wife Kathryn and I were just talking about this. The only way I can describe it is that it is just like severe "pins and needles", "asleep" or "fuzzies" except for one thing: I can tell the difference between PN and normal "my foot's gone to sleep" but I can't describe the difference. Same as sore muscles from exercise and sore muscles from autoimmune disease: both sore but there is an indefinable difference.
I had a just plain weird experience today when out of the blue the sole of my left foot went severely fuzzy. That was OK; I could sort of drag it around but then it started on my right foot. Oops. Try walking with both feet immersed in ginger ale (real Vernor's Ginger Ale, if anyone here is from Michigan). I sat down before I fell down, remembered "this too will pass" and it did.
I asked my very good doctor about PN and he said it fell into the category of "learn to live with it". There's a lot of that with Lupus.:lol:
Douglas+

 

[tbunny1]

Well - here's a weird symptom I've had for long before I ever began to get ill with SLE. :scratch:

My knees "lock up". The muscles or tissue surrounding the knee cap become tight and painfull, with some numbness behind the knee. As the muscles become tighter, the best I can describe it is that it is as if my knee was rubber bands, and someone was winding them tighter and tighter. After a little bit, I can't bend the knee at all.

I have mentioned this to physicians for years now, and usually get the "deer caught in the headlights" stare. :doh:

Could this be nueropathy do you think?

 

[Lily]

Hi Tracy,

I have similar symptoms to what everyone else has described and they seem to vary at times. To the point I could probably identify with most of the symptoms mentioned in this thread at one time or another. Sometimes I get great pain, other times pins and needles or burning sensations and other times weakness or no feeling at all in my legs. Makes driving fun as I find lately I tend to watch the speedometer because I can't 'feel' how much pressure I am applying to the accelerator.

I have suffered a feeling of pain in my knee, then a rubber band type pulling tighter feeling which runs down to my ankle and foot. I really have no idea if this is related to PN or whether it's a case of general inflammation in the knee which goes on to affect the tendons and ligaments. Sometimes it's hard to define just what belongs to what when we have a lot going on.

Good luck with your tests Tracy and let us know how you get along.

love
Lily