Hi everyone . So I have something called POTS syndrome (Postural Orthostatic Tachycardia SYndrome) I will not go into details but basically Lupus destroyed my AUtonomic nerves which is part of the central nervous system (not the brain BUT the nerves) Anyway because of that I reckon I Have I guess CNS involvement . This makes me scared as I keep reading all over that if you have CNS lupus - you will have a poor prognosis . I Am only 27 I can't see myself only living till say 40! makes me so scared and worried I cry almost every night because of it . what do you see about CNS lupus - it hasnt affected my brain but it has my nerves :( does anyone else have nerve issues? WHat do your docs say about CNS lupus im just scared. I want to try to live a full life
Potslupus, I know sometimes what you read up on can be scary, and understand your wanting to have a good life. Although we all deal with disease ravages, attitude and lifestyle can go along way towards helping ourselves. I would definitely talk to whoever is treating your lupus, and voice your concerns, followed by questions on how best to proceed. I would want to see a nutritionist who is familiar with lupus, get guidance about supplements (I take B12 and zinc, plus Vit D for pain, nerve involvement, etc). Please know you are not alone. Very glad you are here!
hugs, Louise
I was diagnosed with CNS lupus in 1987 and continued to work and live a full life since I agree with Louise- lot depends on your attitude I am a firm believer that you are only as disabled as you allow yourself to be.
wow great words thanks so much
I was diagnosed with CNS Vasculitis and CNS Lupus. I almost died of kidney failure in August if this year. I am being treated with Cytoxan and steroids which has completely turned around my kidneys and has really helped my nervous system. I wasn’t able to walk a few months back now I can walk short distances! Talk to your doctor. There is a lot of scary information (worst case scenarios) on the internet. It’s not the norm. Try to stay positive, find treatments that will work for you and enjoy life. I too was very scared but now I am fine as I know God is in control and He gave us medicine and doctors to help us fight these horrible diseases! There is hope and treatment for you. Stay strong and positive. -Hugs Tina
I have cns lupus and cns vasculitis, damage to my brain itself and nervous systems, had a stroke in feb, was very critical, have also had kidney failure in past (lol Tina maybe our bodies met at the “factory”)…I agree with these fine ladies, though–attitude and a great support system can overcome even the bleakest or most “warped” statistics. Also, the way I look at it, we fight to survive so that we can LIVE (the two are distinct, something important/crucial to remember), so, if you have many years on your side but spend them knotted up in worry or fear or constantly on eggshells, you aren’t really living. Per se. I’m not trying to be insensitive, bc, trust me, I know the challenges (was dx’d 10 yrs after first getting “sick,” and have had lupus a total of 15 yrs now, some of the “worst”/most dangerous/critical of it in the last five to 8 yrs or so. And I just turned 27). I almost died in February and it took me months to learn how to sit, stand, walk, move my right side, etc, again, but I did and I feel I have the best life ever. Once you realize that no one has a guaranteed life or life course and the best you or anyone can do is try your hardest, life will truly be life and you can conquer all. When you try your hardest, which I’m sure you do, you can have no regrets, you can tuck in at night or pull the covers away (or try to!) in the morning, proud, knowing that you are winning and living and that is why we fight to survive! So give yourself a break and soak up what matters and know we are always here for you. Remember what brings you joy and realize that there are almost endless ways to reach the same goals. Oftentimes the more creative the approaches you may be “forced” to take by other-abledness, the more rewarding the outcomes. Stick to general goals, not getting caught up on little/intricate plans, and you’ll find the world is wide open, right before you, your canvas, and what winds up happening will be far better than anything you could’ve orchestrated in some predictable (ie unrealistic!) world. So like the other ladies said in a much prettier/more concise manner, hehe, with the right attitude, approach, outlook and support/resources/treatments, you will wind up noticing that the positives of a predictably unpredictable condition like lupus CAN far outshine the “negatives.” Hang in there and feel better! Endless love!!
Nan said:
My best friend has POTS also with myofascial fibro and I am not sure what else. Her POTS started after birth of second son who is an adult now. Took a long time to figure what was wrong with her heart. SHE was the one who figured it out...then it was confirmed by two specialists. She just found out in last few months about fibro. But she has had problems for couple of years.
Have you been diagnosed with CNS lupus or do you think because of the POTS you have that type of Lupus? You might want to check with your Dr. about this. You might have POTS and a different type of Lupus other than CNS kind. My friend has raised three boys to now all young men. Yes, she has bad days but yesterday we went to estate sales and had fun. I am paying for it today and so is she a little. After I dropped her off, I kept going. VERY DUMB on my part. Smart on her part.
Please check with your doctor about CNS Lupus.
I haven't looked at your profile of where you live, but love the "I reckon" statement. My daddy was from the south and that reminded me of him because that is how he talked. I guess he wrote that way too! Take care and try not to get bogged down with the diagnosis part...just go by how you are feeling each day and live for each day the best way you can with your conditions. You are very young (compared to me) and I am sure you have many wonderful days ahead of you!
Hugs,
Hi Nan I only say I Could have it due to because I have POTS . BOTH lupus and POTS started at the same time - I even still question my Lupus diagnosis - my ANA was 1:160 with no antibodies and an ESR of 28 and CPK of 0.1 ; its hard to say the only reason i got this diagnosis because they were trying to figure out what I had POTS (which happened directly after a bad pregnancy) its been a whilrwind!
Hi.... I have had CNS since 1985, I have had a great full life, fun, great life...No one can tell you when you are going to leave us....What I learned is when you feel good...you go play, enjoy life...when your bad you rest you hurt and you get better.....I diagnosed at age 26 with ITP they gave me 6 mos....well I said poop on that no one tells me how long I have....and now I am 59 yes I have had other things going on but you deal ..you hurt, but you get up again...So my dear you stop reading and write your own chapter....and enjoy life...
Sending you strength and love..
Bernice...
Hey Nan - My SED Rate (ESR) was 28 ANA has been between 1:80 and 1:160 and CPK 0.1 (normal) . I do not have any other signs of CNS lupus other than occasional headaches - so not sure - someone told me pregnancy itself can cause POTS - and I am hypovolemic which can cause POTS . and they said fluid shifts from inflammatuon thru lupus can cause POTS - not neccisarly damage to the nerves . POTS is SO unknown its hard to tell. I am on the facebook POTS board - but I wish there was one that was for POTS and autoimmune because many POTS people have Sjrogrens, MS , LUPUS , or MCTD so it would be nice to talk about the combined issues
and I have been on plaquenil for 8 months - but now having side affects so I may be OFF meds for a bit :/ or lowering the dose . . .. .which is scary. I Dont get much joint pain but we will see. . . . Diet is KEY Lifestyle is KEY . I know that one for sure I dont want to take the more hardcore drugs like Cellcept or Methotrexate. so I dunno what we are going to do.
Nan said:
Dear Potslupus...yes I am wondering if you Lupus is really your POTS also, but when you were having the bloodwork done for Lupus...how were u? My ANA has come back positive at times and negative at times. My CPK is always high though, but I also have RA and OA (mild) and fibro.
I have watched my friend with POTS deal with some of the same things I have and then some things are so different. She told me there is a POTS online support group also. She has gotten a lot of support there. I am on the fibro support group also.
To Tara...I have also had two mini strokes. I commend you for your determination in regaining movement!
I think it is very hard to distinguish what is going on when you have more than one diagnosis. However, I think the remedy is pretty much the same...rest, reduce stress, get healthy, etc. I do understand though the seriousness with the CNS Lupus diagnosis and that many of the complications need to be address immediately. I do think for your own piece of mind that you need to bring your concerns to your specialist. I am not an expert by any means. I have only recently been diagnosed with Lupus although I think I had it way before I was diagnosed and it went in remission for a few years. However...it's BACK!
Please know that you have so much support here! If you want the web address of the POTS support group, I will be glad to get it for you. I know there are probably more than one!
God bless!
Nan
I had Transverse Myelitis & CNS involvement. My legs were so weak I couldn't go up the stairs or even push myself out of a chair. My Rheumatologist was afraid I would be paralyzed. I became numb from the waist down. After a hospital stay IV Cytoxan & high dose steroids I slowly regained function. It turned out I wouldn't need rehab. I'm so thankful I have no dysfunction from this. I know there have been Lupus pt's in wheelchairs paralyzed for life. CNS Lupus is serious but there are treatments that can be very effective. I saw a neurologist for a time that helped with the nerve involvement with neurontin. i hope this helps, Good Luck to you...
All very well said! I go to the neurosurgeon myself tomorrow and have been fretting about it all night - I needed to hear every word you said, Thanks for reminding me it's all in the attitude!! I need to live up to my penname, and kick the health issues in the butt, and quit letting them kick me! *lol*
And potsupus, these fine ladies have given you a lot of good words and hope - I hope you hear them well, I wish you all the best, and never forget this is always a safe and warm place to vent, cry, laugh, whatever you need to do! *hugs*
Tara J. said:
I have cns lupus and cns vasculitis, damage to my brain itself and nervous systems, had a stroke in feb, was very critical, have also had kidney failure in past (lol Tina maybe our bodies met at the "factory")...I agree with these fine ladies, though--attitude and a great support system can overcome even the bleakest or most "warped" statistics. Also, the way I look at it, we fight to survive so that we can LIVE (the two are distinct, something important/crucial to remember), so, if you have many years on your side but spend them knotted up in worry or fear or constantly on eggshells, you aren't really living. Per se. I'm not trying to be insensitive, bc, trust me, I know the challenges (was dx'd 10 yrs after first getting "sick," and have had lupus a total of 15 yrs now, some of the "worst"/most dangerous/critical of it in the last five to 8 yrs or so. And I just turned 27). I almost died in February and it took me months to learn how to sit, stand, walk, move my right side, etc, again, but I did and I feel I have the best life ever. Once you realize that no one has a guaranteed life or life course and the best you or anyone can do is try your hardest, life will truly be life and you can conquer all. When you try your hardest, which I'm sure you do, you can have no regrets, you can tuck in at night or pull the covers away (or try to!) in the morning, proud, knowing that you are winning and living and that is why we fight to survive! So give yourself a break and soak up what matters and know we are always here for you. Remember what brings you joy and realize that there are almost endless ways to reach the same goals. Oftentimes the more creative the approaches you may be "forced" to take by other-abledness, the more rewarding the outcomes. Stick to general goals, not getting caught up on little/intricate plans, and you'll find the world is wide open, right before you, your canvas, and what winds up happening will be far better than anything you could've orchestrated in some predictable (ie unrealistic!) world. So like the other ladies said in a much prettier/more concise manner, hehe, with the right attitude, approach, outlook and support/resources/treatments, you will wind up noticing that the positives of a predictably unpredictable condition like lupus CAN far outshine the "negatives." Hang in there and feel better! Endless love!!
I have nerve involvement but have never mentioned it to my Rheumatologist because I assumed it was unrelated. Get as much information as you can from your medical team and don't read too much into some posts or random websites or you will make yourself crazy. Your Rheumatologist should be your best source for information. Also, don't waste your today's on tomorrow's that aren't here yet. ♡Jeanne