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Old 06-15-2007, 10:07 PM
Marjorie Marjorie is offline
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Posts: 9
Default Lupus is destroying me

I've been battling CNS vasculitis from lupus for 7 years. I've been through the chem with cytoxan infusions twice, numberous pulse steroids, plasmapheresis, steroids and all the rest to no avail. It keeps coming back!

I'm at the end of my rope, literally. I have SIADH from the cytoxan or the CNS lupus, so cytoxan is dicy for me, also it caused symptoms of cystitis last time. Too many oral steroids caused a devastating psychotic episode that landed me in a locked mental ward for 6 weeks. Plasmapheresis was just a stop=gap measure for me. I'm seriously depressed.

What I'm left with after all these treatments is relapsing transverse myelitis with severe spinal pain in my privates and tailbone and between my shoulder blades. Severe depression from the Transverse Myelitis. I read where it causes a chemical in the brain that causes depression during episodes. My mind doesn't feel right since my psychosis last year and I need to get back on anti-psychotic meds which do nothing for the depression.

I have no quality of life. This has harmed my family and marriage irreparably. My sons are grown and cannot take any more. Neither can I. I really feel like ending this misery for myself and loved ones.

If I could get into a clinical trial where they do stem cell transplant I'd jump at it but I have a f****** HMO which would rather see me dead than pay for that. Since the psych episode they have written EVERYTHING off to being all in my head, adding insult to injury.

ONE IN A MILLION. That's the odds of SLE patients getting this. Which means rheumatologists and neurologists haven't a clue but are too arrogant to admit it so they torture me with repeat EMG/NCS which are apparently done wrong by the HMO docs because they show nothing. A good neuro that I paid out of pocket a few years ago did document the sensory neuropathy with NCS. HMO docs find nothing. They order the wrong CSF tests when the do spinal taps, even though I paid an outside consultant, Dr. Daniel Wallace for the correct tests. He's the one who originally diagnosed me.

Beyond advice, just sharing what this disease can do to you in its extreme. I have fought the good fight but I'm so tired of suffering for nothing. No real hope in sight.

Does anyone know of stem cell trials where they do not require referral from primary care doc? Mine just treat me with contempt.
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Old 06-17-2007, 11:14 PM
Marilyn Celeste Morris Marilyn Celeste Morris is offline
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Default I Also Have Lupus

I also have lupus. Was diagnosed in 1988. It's a ***** of a disease. And not many people are aware of that, because we don't look sick. My doctors were really dismissing me as having lupus because I was 50 years old when diagnosed, which is not typical for lupus patients.

Are you a member of a support group? If you can't make it to support group meetings, maybe you could continue posting here for support. I've been looking for an online support group, in addition to be a facilitator in the Fort Worth TX support group of the North Texas Chapter of the Lupus Foundation of America.

What I am relating to you with your story is the lack of medical expertise we have in this area of healthcare. And Lord knows I have learned about the HMO system(s) and having to go to the County Health Clinic for medication and doctors appointments where I had to stand in line with The Great Unwashed....a truly humbling experience. And as for Mental Health treatment.....It's also abominable and damned expensive. I go to a psychiatrist strictly for anti-depressants and anti-anxiety meds. It's not like the image the public has of "crazy person lying on a couch and confessing all her deep dark secrets..." that's the provenance of a poorly-paid, overworked psychologist, some of whom are barely out of school and who don't yet have a firm grasp on the illnesses that can cause depression.

I have to laugh at one really determined young woman at a Baptist Seminary (hey, you get the free help where you can!) whose main goal it seemed was to have me list my chores daily on a calendar, and then do them. I almost laughed out loud at her earnestness that this would cure my inertia, and therefore my depression. I did tell her that many mornings, my only major accomplishment was getting out of bed. And then only because my bladder was full. Needless to say, she didn't have a clue how to really help me.

I realize I'm rambling; it's getting late in the evening and I need to go to bed soon. But I did want to touch base with you after I saw your message --

I got your post through a Google Alert, which I had set to capture any posts about lupus so I could see where my book was being read or reviewed. It's on and other on-line bookstores. It's Diagnosis: Lupus: The Intimate Journal of a Lupus PatientThis isn't a request that you buy my book, by any means. You might read an excerpt on my lupus blog:

Please let me know how you're doing and let's keep in touch. We need all the support we can get.

Marilyn Celeste Morris
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Old 08-03-2007, 12:57 PM
Marjorie Marjorie is offline
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Default reply to marilyn

Just so you don't get the wrong idea. I've been a fighter all my life but this has me whupped. Compound it with the fact my illness traps me in a very unhappy marriage - can't fend for myself financially - and the outlook is grim. I am seriously ill with this every year. Doctors can't "find" anything.

I was diagnosed with CNS vasculitis, which I've read is the most lethal form of lupus, based on abnormal spinal tap in 2001. That started me down the road of multiple chemo treatments, which were a nightmare for me. I puked my lungs out, lost most of my hair and became a living skeleton. This is no way to live. I feel like I'm already dead.

Even my ANA is negative now, but I think they are using the wrong test for this. They always use the direct method of ANA detection which nevr works for me. When they use the indirect immunofluorescent method it is positive. Why are they so stupid? They refuse to order the right test even though I have tried to explain that the direct method is less sensitive and medical journals I've read state that a negative ANA done by direct testing should by no means be interpreted to mean ANA negative. Apparently it doesn't test all kinds of ANA. It misses some subtypes. Mine, obviously.

So they sit there with a straight face and tell me I don't have lupus!!! Yet refuse to order the darn test that would probably show it.

Whatever I have, it is killing me. Torturing me to death. I don't want to live like this.

What sort do you have and how do you cope? Are you married? My "husband" has bailed on me emotionally. Oh, we still live together but only because he can't afford to divorce me. I have his crappy health insurance which is another source of torment. The doctors are so stupid! And arrogant!

I am basically just waiting to die. It can't hapen soon enough for me. My life is hell. What makes you want to live? Just curious. Can you do anything or are you trapped in bed like me? I wish I had died of this in 2002. I wish death were easy but it isn't. The body clings to life against all odds and despite tremendous suffering. If there were any hope I would grab it. But there is no cure and I'm trapped in a miserable relationship. How did this happen to me? I was once a bright, beautiful, open-hearted woman. This has destroyed me.
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Old 08-04-2007, 12:36 AM
Izzy Izzy is offline
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Join Date: Oct 2006
Posts: 41

Marjorie, my heart cries for you. I suppose most lupus patients have been where you are. I know I have.

Fact is just today I wished my husband had never asked me out on the first date. I feel so guilty when I am unable to do things with him which is most of the time. I will say up front that I am a Christian and I truly believe in the power of prayer. I believe that God cares for me and he cares for you and he is leaving us here for a purpose.

I chose to dismiss those feelings. I am taking Prozac and it helps with the really bad depression but I still get depressed. Are you taking an anti-depression? It might help.

I am 65, had four sons, one who was killed in a car wreck in 1986. The others are happily married with children.

I have had lupus for about 20 years, diagnosed in 1990 but official diagnosis not until 1996. They started treating me for lupus in 1990 and it bothered me for a while they my doctor called it "this lupus thing". It was hard for me to get past the initial shock and I wanted a name for it.

My suggestion is if you don't like your doctor and are able to change then do so. I saw my first rheumatologist for 10 years and I felt like she was not doing what she was supposed to so I changed doctors. If this one gets too busy to be a good doctor, I will change again!

Another suggestion is listen to your body. If you feel like getting up then you certainly should but don't push pass your limits. My limits are tremendous as I am sun-sensitive and cannot even spend an hour in WalMart without getting sick. But if I do go, I plan a rest day the next day. This is very important for you to let your body recover.

As for my husband, I do everything I can to build him up. I try to prepare meals, although they are sometimes disasters when brain fog is bad. And I try to not act sick. It doesn't do any good anyway. My mother, bless her heart, is the only one I ever got any sympathy from. My husband and boys just acts like lupus is not there, I guess, hoping it will disappear. Haha!

The weakness and brain fog are what I hate most!

I am sorry you feel so bad and are having such a hard time. Please don't give up. As long as you have breath you have life and it is precious.

I will check back. I have had grandchildren all summer and I feel like an old grandma!

Take care,

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Old 08-07-2007, 09:22 PM
Marjorie Marjorie is offline
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Join Date: Jun 2007
Posts: 9

I had "normal" lupus for 10 years before it entered my central nervous system. I was able to cope with it. Everything changed in June 2000 when all hell broke loose. Doctors do NOT know how to handle this! There are no "tests" to confirm or exclude this diagnosis except for AUTOPSY which is when they typically get the PROOF they need to start treatment. That is the major reason most lupus sufferers die from this!

I believe I could have a reasonable life on maintenance chemo. Well. let me define "life". By that I mean clinging to a half-life unable to work, travel etc. My life would revolve around doctor appointments and chemo treatments. Not much fun but I would cling to it for the sake of my children if nothing else. I do not want to die. I am not even depressed. It's like telling a concentration camp inmate that you have a pill that can make them feel better about their situation. Sorry, but you just don't get it. Happily for you, lupus has not totally destroyed all qualifty of life. I am happy for you. I used to be there and it was OK. Not good, but OK.

I cannot begin to describe the physical suffering involved when lupus attacks the spinal cord. Not looking for sympathy, just understanding. It is sometimes referred to as MS Plus. When I try to stand I am in unbearable pain in my tailbone and perianal area and feel like puking and passing out. So I stay in bed most of the time. Then there are the headaches and stroke-like episodes. I've lost my balance, and bowel and bladder control with this. My newest symptom is feeling like I've seriously burned my fingers.

And the worst part is watching these doctors trip over their own feet because they cannot "measure" this disease activity by any known lupus test as it is confined to the central nervous system. That is where the battle is taking place. Mild ischemic changes, which I have on brain MRI, are the only apparent clinical sign. And possibly elevated protein in spinal fluid. Neither of these signs is conclusive and can be caused by many other conditions. Even a brain biopsy, which would help if it were confined to my brain, is useless for me because this is in my spinal cord (a little brain involvement).

And central nervous system vasculitis, my official diagnosis, can be caused by lots of things, including AIDS, which was ruled out for me. It can possibly be caused by retrovirus like herpes simplex - impossible to prove at this point. I know in my heart this is lupus. It just makes the most sense, and the first flare, which was severe, began with a major lupus flare in 2000.

This is a very rare development for lupus and has been described in medical journals as "rare but devastating". The worst thing is that maintenance chemo would make a huge difference in my quality of life but I cannot get doctors on board with this because they cannot even "prove" I am having a relapse! They have to take my word for it and you know how far that gets you with doctors. So they end up thinking it's all in my head, adding insult to injury.

I hope neither you nor anyone else will ever walk in my moccassins.

Pray for me.
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