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I've posted various parts of this post over on the men with lupus place an in a "Symptoms" thread about CNS involvement, but I've edited it a bit and included it in this particular thread since I'm a newbie. I'm a 52 year old physically active man who was recently diagnosed with CNS Lupus.

After eight years of various nerve entrapment surgeries, unexplained falls, chiropractor visits for "pinched nerves," and living with unexplained chronic pain that seemed to come and go from no where, etc., I was recently diagnosed with CNS lupus.

Apparently it has been attacking my peripheral nerves for quite a while, often causing a strange stroke-like gait or a foot drop that causes me to fall (but only during flares). I was a runner/cyclist and always attributed the bouts to over training, pulled muscles, pinched nerves, etc. Athletes always blame themselves or their training.

I've been having these flare ups for the past 8 years or so, and they've usually gone away on their own or after the nerve surgeries I didn't need (apparently because they gave me steroids to help heal without scar tissue).

This particular flare up started five months ago and by the time I got a diagnosis, I was just about in a walker. At any rate, I've been on prednisone and hydrochlorquinine for about a month, and I seem to be improving. Today, I was able to walk a three mile loop slowly. When not flaring, I walked my labs five miles every morning at just about a jogging pace, and usually ran, lifted weights, or cycled later in the day. What long strange trip it's been.

I would also have these really strange bouts of irrational behavior and/or thoughts right before the onset of the peripheral nerve problems. An example being that I have been a motorcyclist since I was eleven years old, and I have ALWAYS had a motorcycle in my life since then. Last spring, I suddenly decided that motorcycles were dangerous, so I sold my three bikes and bought a new stove...crazy...by July, I was back to normal and couldn't (for the life of me) figure out why in the heck I had sold the bikes, so I bought another one. Looking back over the past eight years, I can see other times when I had strange unexplained reactions to things and sometimes downright self-destructive behaviors...and then suddenly, I'd step back (and I swear, sometimes I felt it leave my body) and say ***?

I sure hope this med thing straightens me out. It's been a wild ride.

Anyone else been there? I really thought I was losing my mind, and it scared me to death.
 

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Welcome to the site. I hope you are able to find some of the answers you are looking for. It amazes me that even after 22 years I am still learning new things about Lupus all the time here.

I also have CNS. Your stroke like gait is a daily companion for me. The foot drop fortunately comes and goes depending on disease activity.

Please feel free to post. The members here are more than happy to share their knowledge and experience with you. You can also ask questions in the chat room if you like. Hope to see you in there sometime.

Take care,
Lazylegs
 

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Discussion Starter #3
Thanks Lazylegs...I am definitely in full learn mode. I'm sorry about your gait; it really is a drag, but in a way, it's reassuring to hear that someone else has a similar symptom. After eight years of misdiagnosis, I've become a bit of a skeptic.

Two of my unexplained falls (in the last 8 yrs) happened when I suddenly changed speed and went to run across a cross walk. One resulted in a broken leg; the other in a broken elbow...and I just thought I was getting old and clumsy.

If this hydrochloroquinine works, I will be definitely be super-stoked.

Again, thanks all.
 

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Antaeus,

Welcome to the board and thank you so much for sharing your story. I'm still getting the "pinched nerve" bs myself. I have had pinched nerves in the past and my current hand, wrist, arm, shoulder and neck symptoms have nothing to do with pinched nerves. All symptoms point to CNS Lupus or Mixed Connective Tissue Disease. How were you finally diagnosed? What tests confirmed your diagnosis of CNS Lupus?

Barb
 

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I forgot to mention that I have experienced foot drop as well though it was quite a while ago. I have also experienced complete failure of a hand, arm or leg at times, temporary loss of vision bilaterally, etc., etc. CT scans and MRIs have been done (brain, neck, heart) but nothing abnormal was found. No spinal fluid has been tested though.
 

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After several visits to a Neurologist (who thought I might have chronic relapsing neuropathy), I was sent to a rheumatologist for another opinion. As "luck" would have it, I was in full flare, reynauds, skin rash on the neck, walking like a stroke victim (wife holding my arm for balance), sores in mouth, thick tongue slurring my speech, mind in a haze, etc.

She took one look at me and all my past nerve entraption surgery scars, and she said, "You've got Lupus, Dude." She actually called it Peripheral CNS Lupus because it's primarily been affecting those nerve bundles. Incidently, back in 2001 when I had what was probably my first flare, I had high ANA numbers on my initial blood test, but by the time I got to a Rheumatologist, I was fine and my blood was normal, so they wrote-off the initial test as possibly flawed. In 2002, I suddenly lost control of my legs while out for a run and broke my leg...and ever since then, the hits have just kept coming.

I'm relatively new to this, so I can't recall all the tests, but they took a lot of blood. I know that my ANA numbers and some other things were pretty high.

That was on May 13, so it's all still pretty new to me. She threw me on prednisone and hydrochlorquinine at that time, and while still far from normal, I seem to get a little better every day.
 

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Yours sounds very much like mine, except I haven't broken anything yet with my falls :fingers:. Are you using a cane to help your balance? Depending on how I am I go from cane to walker to wheelchair.

Has your doctor recommended any type of physical therapy? My neuro has me doing yoga. I found a great free class at the senior center (50 and above). It has helped keep the muscles toned and greatly improved my balance. Others on the site swim as part of their therapy. Swimming is much more gentle on the joints than some other forms of exercise.

The Plaquenil will take some time to kick in. In my case it took 6 months. You are fortunate your doctor also prescribed Prednisone to help you get through that time period.

Take care,
Lazylegs
 

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I have done the cane, the walker, and the wheel chair as well, although about six months ago, I loaned my walker to my 84 year old father-in-law ;).

I'm walking pretty well right now, so I don't need anything at the moment, but when my legs go, they go in a hurry.

No, no prescribed PT yet, but I'm a pretty faithful exerciser (maybe a little too much sometimes); I've been doing Yoga for years on my own because like most old ex-distance runners, I've never been very flexible. Since I've been able to walk again (about the last two weeks), I've been walking my labs two-three miles in the morning, so I'm slowly getting better. I'm a school teacher and am now off for a bit, so I'll be able to nap and recover better. Many sleeps throughout the day seem to help me a bunch.
 

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Hi and welcome to the site.

I am sorry you have had a tough time of things but I do think that now the medicine will continue to help you and you will be able to get back on track again.

I have not had the behaviors that you speak of. For me it goes between anxiety and depression yet somehow I always bounce back until the next episode creeps up.

I do hope to get to know you better. I am glad your able to walk 3 miles with the dogs and sure hope you get back to walking 5 again. I have problems with a drop foot on my right side and pretty bad wide spread chronic pain that does not allow me to walk much. Oh well it could be worse...........I tell myself this alot.

I used to be a gymnast, dancer, runner and rode Harley Davidison motorcycles for many years. In 1991 I got pregnant with my son and that was the last time I rode. I had a kid to raise and truth be told it is dangerous so I gave it up. I could not balance a bike now if you paid me to.:lol::lol::lol:

I see you live in Wyoming...................ahhhhhh, it is Gods country out there. As for me and mine, well we live in the arm pit of the world....New Jersey. Once my son is done college I think the Carolinas are calling my name.

Hope to chat with you in the chat room sometime and again, welcome to the site.:wink2:
 

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Hi and welcome to the site. It is not uncommon to have things like you discribe happen and the like you say you come to your senses lol. I am not sure why this happens or what makes it happen but we have all had it at one time or another. It can be scary to realize that you have done a 360 only to be at square one shaking your head like someone else had been in your body while you took a vacation lol.

I hope you find the site helpfull and supportive. I know it has make a difference in my life and opened some doors for me. I no longer feel alone and scared of what happen, I just come here and they talk me through it all. I hope the site does the same thing for you.

I hope you are feeling well and doing well.
 
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