It is essential that lupus patients remain aware and proactive when dealing with new symptoms or old symptoms that return with regularity. A trip to the doctor may be inconvenient, but it could save your life. Sometimes when the ostrich sticks its head in the ground, it gets run over by a jeep.

The lesson for the week is don’t get run over by a jeep.

I found this on the Lupus International website:

NEUROCOGNITIVE DYSFUNCTION is also a common and overlooked clinical feature of lupus estimated to occur in up to 80% of affected individuals. The diversity of cognitive impairments parallels the considerable variability of the disease process. Deficits in learning and/or memory, reasoning, verbal fluency, motor function, basic attention, and information processing speed are the most consistently described.

This is precisely the kind of things my wife’s been dealing with for years, although never all of them at once.

In general, objective tests of cognitive performance are unrelated to perceived stress, depression, and anxiety, suggesting that cognitive impairment may be a primary disease manifestation consistent with other immunemediated disease with neurologic involvement (e.g., acquired immune deficiency syndrome and multiple sclerosis). Alternatively, the relationship between depression and cognitive performance may be determined by more subtle aspects of lupus, including sleep disturbance, fatigue, and pain as has been suggested in studies of individuals with multiple sclerosis.

We have often wondered if it was just stress or if things were just too busy, but there have been many times where things weren’t that stressful or busy, and my wife still had cognitive issues.

I remember Jenny’s rheumatologist talking about how vasculitis can affect cognitive function by causing small lesions in the brain. I was reading about vasculitis on the Lupus Foundation of America website, and I think that this might be the reason for much of what has been going on for the last couple of months.

We are going to consult with Jenny’s lupus specialist and see what needs to be done. Has anyone else dealt with this?

We treated it with medication and ice packs, but it was a very stressful experience for my wife, who obviously has enough to deal with as it is. We were trying to think about what could have triggered the episode, and she told me she had gotten a B12 injection when she was at physical therapy. We did a little searching and discovered that these types of headaches can be a side effect of a B12 injection.

It’s odd, but I also remembered that she had a similar, but much less severe reaction when she was taking B12 in pill form sometime last year. I should really be better about keeping a more complete record about this stuff.

I was just curious if anyone else had a similar experience with side effects from a B12 shot or any other type of high-dose vitamin interactions.

I noticed this immediately because it is something my wife has had trouble with for the last month or so. Typically, the sweating comes first and the dizziness follows a bit later. Now when she mentions that she’s sweating, I try and get her to sit down and rest.

The sweating thing is relatively new for her. Obviously someone else with lupus is experiencing the same symptoms, so I thought I would throw it out there for discussion.

On an unrelated note, I’ve swapped out my old polling plugin for a new one, and should have a new poll up soon. This plugin is a lot more powerful and flexible, but requires more extensive setup.

I would recommend that you first visit the Sjögren’s information page at the Lupus Foundation of America for more information.

My wife has just recently started taking Evoxac, which is a medication for Sjogrens. It’s pretty early to tell if it’s making any difference, but we have had an odd episode where she woke up coughing from too much saliva, which was a little scary.

The current poll is set to end on March 3, so if you haven’t participated, there is still time.

Raynaud’s can be an early indicator of a number of connective tissue illnesses, including lupus. My wife has Raynaud’s and so does another member of her family. Strangely enough, I think I have it as well, to a lesser degree.

Those with Raynaud’s Phenomenon should avoid smoking, cold temperatures, intense vibrations, and emotional stress, so don’t argue with someone on a Winter train ride in France.

In our house, we make sure we have warm socks, and if it gets really bad, we just soak our hands or feet in some warm water. We also bought one of those parafin wax skin treatment machines. My wife likes it a lot, and she says it does help, but it’s a bit of a pain to use it.

• Thirties 40%
• Twenties 28%
• Forties 16%
• Under twenty 14%
• Fifties 2 %

There were choices for sixties and above but they were not chosen.

My wife was diagnosed quite early, but the results show that readers have had a different experience. If you look at the poll, you can see that over two-thirds of those who responded were diagnosed in their twenties or thirties. I wonder if that has to do the actual onset of the illness or the difficulty in getting a firm diagnosis? Does it have something to do with having children, or maybe the fact that those two decades are commonly the childbearing years? How long did it take to get the diagnosis from the time when the person started to notice symptoms?

• 37% indicated that they sometimes have noticeable symptoms.
• 32% of those polled said that nobody would guess that they have an illness.
• 24% voted that they hide their symptoms very well.
• 8% of those who responded have obvious symptoms.

Sometimes I wonder if lupus would be treated differently if it had more visible symptoms?

For the first poll, I wanted to get some feedback on a subject that comes up often in Lupus discussion groups, and is something I’ve dealt with recently. Lupus and the pain-in-the-butt suite of illnesses, syndromes, and phenomenons that usually go along with lupus are not always easily seen. Most of the problems that my wife has are fairly invisible. This latest problem with her hands was certainly an exception, but usually, other than skin reactions related to her photo-sensitivity, Jenny doesn’t usually look sick.

The only problem with not looking sick is that many people who are not familiar with lupus or other potentially invisible illnesses will often have trouble taking the illness seriously.

I’m just curious how many of you out there with lupus, or whose loved one has lupus, have symptoms related to your lupus that are easily visible and how many have a somewhat invisible illness.

You are still free to make comments as well. I do appreciate them. Also, if you do happen to see an advertisement that interests you, please click it and check it out. It doesn’t cost you anything to do so, and the few pennies I receive do add up and help a lot when my web hosting bills come due.

It’s very frustrating when your specialist is two hundred miles away and doesn’t always respond to phone calls.

It looks like a chemical burn, but she hasn’t handled any chemicals.