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Lupus?

Moms View Message Board: General Discussion: Archive June 2004: Lupus?
By Lauram on Tuesday, June 1, 2004 - 01:19 pm:

Well, it's back "on the table." I swear this never ends. I just had 3 hrs of neuropsych testing. I don't have a memory problem per say. My memory is great, my cognitive flexibility is excellent. Now for the bad news. My cognitive retrieval is poor and seems to have significantly decreased based on my educational background (I'm an English major with a Master's and sixth year degree in Education and I couldn't list many words that start with a.) I am also under chronic stress (DUH!) (On that note, ds#1 was just given a prescription for his anxiety- Klonidine- and is gong to remain on Strattera- because it obviously is doing something!) Anyhow, he also thinks I have an autoimmune disorder stemming from when I had mono at 18. He thinks that when I got Lyme disease 7 years ago and then 1 year ago, my body has just had trouble coping. He thinks I need to be looked at again for possible Lupus and Sjorhen (i don't know how to spell that). I had to do a Minnesota personality test (something like that) and then he's FAXING the complete report to my rheumotologist. I go back to him on June 16th, but if I have to see him before that, he will call me (UGH!) He said I won't get better :( and I might actually get worse. If that happens I may have to have a spinal tap and/or an MRI. What a nightmare. He said I need a "really good support system." I told him dh was awesome. I feel like I have CANCER! AHHHHHHH! My unofficial dx right now (before this test) was Post-Lyme Syndrome/Fibromyalgia. We'll see what the rest of this week brings! Any experience?????

By Natesmom on Tuesday, June 1, 2004 - 01:32 pm:

Hi Lauram,
I feel sick all the time too. My mom has fibromyalgia and I wonder sometimes if I have it. I was wondering what your symptoms are? I am always dizzy/off-balance, weak when exercise, and so tired. Sorry that I really have no experience but just to let you know that I feel awful too. Hope you find out whats going on.

By Texannie on Tuesday, June 1, 2004 - 01:49 pm:

They thought I had MS for about 5 years, so I have been through all the testing...MRI, Catscan, 2 spinal taps, Doppler..the gammit. They were able to control most of my symptoms with Neurontin very successfully. I guess I am in remission now cause I haven't had any symptoms for 18 months which ironcially is how long my mom has been dead. Nuerontin doesn't mix well with wine and I was drinking alot of it when she died, so I stopped taking it. The symptoms never came back. I joke that my mom took the pain with her cause she hated that I was on meds.
Anyway, MRI's are not awful. I am highly claustraphobic and made it through 5. If you are uneasy, ask for some valium or an open MRI. If you have had an epidural, you can do a spinal tap, but with the spinal tap it is HIGHLY IMPORTANT that you remain absolutely flat on your back for at least 6 hours while the fluid level readjust or else you will be violently ill. My first one was an emergency one and they let me go home after..huge mistake, took me almost a week to adjust. My next one was done correctly and I was fine when I walked out.
Good luck.


just edited this cause I realized I had made a MAJOR typo..I had forgotten the "not" when I said MRI's are not awful...way different meaning!! I hope you hadn't read this and panicked!!

By Karen~moderator on Wednesday, June 2, 2004 - 09:49 pm:

Laura, I don't have your email address. Email me, mine is in my profile.

By Karen~moderator on Thursday, June 3, 2004 - 07:49 am:

Bump for Laura............

By Mrse on Thursday, June 3, 2004 - 10:14 am:

So sorry you are going through all of theses problems :( I should look up about lupus, do you get numb feelings all over your body? My memory is really poor, my sister has had monday's off for 4 years, but do you think I can remmber that? I always have to write things down, or do them straight away or i will forget. I do not know how many times someone will say to me, I told you that!! and I have no clue. I was sent to a specialist because my doc though I had--------- ok, drawing a blank. started with an M not sure anyway, it was because of the numb spots here and their, every once in a while I get this feeling over one side of my face that is almost like a shadow with tingling numb feeling. The other day I had itchy legs and they were numb, I could not scratch the itch away. But the specialist said I do not have M, and not to worry about it. But why would I not have any feelings in my breasts, and on other parts of my body? Ok, I remember ( only because I re read above posts it was ms . My doc said that if I had symptoms of ms for a few years it was not ms as it would have progress quicker than that, but did not come up with any reason why I can poke a pin in my breast and not feel it.anyway sorry lauram did not mean to go on and on about my own problems. What was the memory test called, I think I should look into that. Hope you feel better soon, :)

By Happynerdmom on Thursday, June 3, 2004 - 11:06 am:

Laura, I think I've posted before about my experience. Several years ago, I had horrible joint pain, rashes, etc., all classic symptoms of Lupus. The rhuemy decided that's what I "probably" had, but blood work did not confirm. I was pretty miserable for about two years. I decided to change my lifestyle. I really concentrated on eliminating as much stress as possible, and better managing the rest. I was fortunate enough to be able to quit my full-time teaching job, and go to just subbing a few days a week. (It was a hard decision...I love teaching.)I really think stress has A LOT to do with it. (During the course of one year, my son had a brain tumor removed, my bi-polar sister tried to commit suicide, we thought my dd had rhuemetoid arthritis, a dear friend lost his battle with lymphoma, my sil lost a baby, etc. etc.!!!) Anyway, life has calmed down (for now!)and I've not had any major symptoms for a long time. I know not everyone can make the types of changes I did, but it sounds like you have SOME sort of auto-immune disease, and I think we tend to under-estimate how stress can make it much worse. I know how it is to feel absolutely horrible, and be in so much pain, and nobody seems to be able to "name" it. You start thinking that maybe you are crazy. You are NOT crazy, but please try to take care of yourself as much as you can. (BTW, the statistics say that it takes an average of 3 YEARS to diagnose lupus!) Find something that relaxes you. (I'm a big believer in theraputic massage.) Enjoy the good days, get through the bad days, and hug your kids and dh everyday. (((HUGS)))

By Lauram on Thursday, June 3, 2004 - 11:36 am:

Mrse- I do not have numbness. That sounds like something different. I DO have tingling in my fingers sometimes, though! The memory tests were a three hour battery of many tests done by a neuropsychologist.

Happynerdmom- I'm a full-time teacher with no chance at quitting. I have the health insurance (we need that desparately) and the income really helps too. My ds#1 has many disabilities and he also can go to my school- which helps tremendously with the amount of mtgs I have to attend about him. THat alone is very stressful. I know stress makes this worse and have been trying hard to eliminate as much as I can. DH has been very supportive too. WOw! 3 years to diagnose it! What a nightmare. I always seem to have to deal with these "epic" illnesses (that's what I call them). I have PCOS which took about 20 years to diagnose. My son has Tourette's, etc.. (average of 7 drs until a Tourette diagnosis- we had 4! The other comorbid issues are even more complex....) Dh is supportive and really helps out- especially now that he understands. Naps or rests - if I can manage them- really help too. I'm looking forward to the summer. I have to take care of the kids (7 and 2) both of whom are really high maintenance, but I'm hoping it still will be easier since I won't be working. We'll see.....


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