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View Full Version : Don't know if I belong here...(long, sorry)



bluedotsmom
11-26-2008, 02:34 PM
...My name is Anne. I'm a 44 yr old mother of 3 (10, 9 and 6), married for 12 1/2 years.

In Sept I went to my PCP for unbearable fatigue, depression for about 3 months. The fatigue was so bad my family was worried. I also have a history of family members with auto-immune disorders. So, she orders tests..white blood count low and ANA high. (this is also similar to an episode I had almost 20 years ago where my blood count kept getting lower & I think my RA factor was borderline. I think I may actually have those records, I'll have to look.)

I had to wait until November to see the rheumatologist. I really like him. He actually read what I wrote on the new patient form!!!! Looks at my arms and tells me I have livedo reticularis (and related this to two miscarriages I've had in the past three years.) After taking history he said he does believe there is an auto-immune process going on and I thought he said he was leaning toward lupus. He also asked about dry mouth, which I do have. So, I gave a gallon of blood to the lab tech.

Two days ago his nurse calls, all tests normal. Low risk of lupus, risk of rheumatoid arthritis (mentioned sero-negative RA,) follow up in three months unless I get worse. (the copy of the test results is waiting for me when I get home.) I have my appt set for March 3 @ 8:45am CST

Now what...the fatigue has been somewhat better lately. I've had substantial hair loss for over three years now (body hair, too), my scalp has itched insanely for a couple of years, muscle weakness, hands and feet get ice cold, I dont' feel as mentally sharp, yada yada yada. Oh, my thyroid is normal.

I don't want lupus, Sjogrens, RA or anything, but something is wrong.

I do take a b-complex vitamin and will be adding good vitamin d

I have been reading here for a couple of weeks and appreciate the honesty and compassion. I'll try not to whine too much.

Thanks for 'listening'

KathyW1958
11-26-2008, 03:23 PM
Hi Bluedotsmom,
Welcome to the site. My name is Kathy and I have SLE Lupus and Sjogrens Syndrome plus several other auto-immune disorders big time. I read your post here and I wonder if you just may have Sjogrens. I am wondering if you also have problems having dry eyes. Sjogrens can also cause horrible fatigue and hair loss and a like a Reynauds in your hands and feet. It can also cause mental confusion. You could have Lupus too, but it seems like more like Sjogrens. I am not a doctor, but have they run a test to see if you have SSA and SSB antibodies? They treat Sjogrens very simularly to Lupus in that they perscribe Plaquenil for it too. Have you seen any of your most recent and old labs? Do you see where they ordered an SSA or SSB antibody test? I am just wondering and if they did not, you can request that they do this and also do you knw what the pattern on your ANA positive results are? Do you know if they say that it is speckle pattern as this is seen in Sjogrens. I hope that I hae helped some how here. Please keep posting ok. There will be others that come in here that may have better information for you.

Hugs,
Kathy

bluedotsmom
11-26-2008, 03:27 PM
Hi, Kathy
Thank you so much for your response. I have wondered about Sjogren's, too. He did ask me if I had dry eyes & I think I said no. But after I started thinking about it, I do have dry and/or irritated eyes. I always blamed it on allergies.

I'll know more on the tests when I get home from work & will post more when I get a chance.

Thank you again for posting and have a Happy Thanksgiving!
Anne

KathyW1958
11-26-2008, 04:29 PM
Hi Anne,
You have a very Happy Thanksgiving too.


Hugs,
Kathy

Saysusie
11-27-2008, 11:00 AM
Hi Bluedotsmom;
I know that you do not want to have any illness (none of us do). But, as Kathy mentioned, you could possibly have Sjogren's. It is also quite possible that you have Lupus with Sjogren's as an overlap disease. The fatigue, hair loss with itching scalp could be due to Lupus and Lupus lesions and the dry mouth etc. could be due to the Sjogren's.
My daughter was diagnosed with RA prior to her team of doctor's discovering that she did, indeed, have Lupus. The problem with getting a definitive diagnosis is that, often, doctors have to wait for symptoms to appear or worsen and/or for lab tests to indicate Lupus. The problem is that lab tests can be normal this month and go off the chart next month. This happens all too often with Lupus. Also, Lupus has clinical symptoms that resemble so many other auto-immune disorders and it is often difficult to narrow down a diagnosis because there can be several overlap diseases occurring at the same time.
Kathy has given you good advice about the specific tests for Sjogren's. In "Newly Diagnosed", there is a sticky outlining all of the specific tests for Lupus. Also, as Kathy mentioned, some of the treatments for Sjogren's are the same treatments used for some Lupus symptoms.
Keep coming here to us so that we can continue to help you to unravel this web of Lupus vs all other auto-immune/connective tissue disorders!
We are here to help you as much as we can.

Peace and Blessings
Saysusie

sits_inthe_corner
11-27-2008, 05:42 PM
Hi and welcome bluedotsmom

I have been coming to this board for quiet awhile. I do not have a diagnosis as yet. Feel like I'm chasing butterflies without a net.

The folks here are very kind and compassionate. They even tollerate my horrid spelling.

When I'm tired my typing and spelling go right out the window.

Feel free to whine here....we all understand. Some times this is the only place where one can whine.

I'll write more later...I did want to mention there are some wonder products out there for dealing with dry eye. I can't remember the name of the one I use at the moment, GelTear or something like that. It's not at all Gel like ... it's liquid and doesn't leave me blurry.

Very tired so I'll stop there.

bluedotsmom
12-04-2008, 03:11 PM
Thank you for all the wonderful replies! Sorry to be gone so long, I got sick over the weekend. I thought I'd share a run down of recent tests. The most recent sure seem unequivocally negative. I tried to give the ranges for reference.

I just don't know. I've also felt weak in my thighs and upper arms & my left hip kills me sometimes & so does my lower back. I'm still trying to see if I have records from 20 years ago when I had a similar episode. One odd thing that has gone on for several months is that I'm having trouble writing. My hands don't hurt, but I can no longer hold a pencil in the normal way and write at all. If I try my writing gets all out of whack. It is odd. I have particular trying to stay in lines, like on a check.

I asked the rheumy about B-12 deficiency (I do take a b-complex, but thought I should ask) he didn't think that was any possibility.

I'm trying not to look for more pain or new symptoms. I guess I'll try to get by until March when I see him again. That really isn't too far away. I guess if he thought everything was perfectly hunky-dory, he wouldn't want to see me again (he already has more patients than he can handle.)

I will be a better patient next time and try to write down what he says.

Hugs and prayers to all the beautiful people here!!!!! Anne

In Sept
ANA Direct of 169 (Negative <100, Equivocal 100-120, Positive >120)
RF Quant result < 20 (0 -19 normal)
WBC low - lymphocytes
MCHC - high

In Nov
WBC now barely above lowest normal level
MCHC - high
ANA by IFA/Titer if Positive result-Negative
ANTI DNA - 0 (yes, that is zero)
ANTICARDIOLIPIN ABS IgG - < 11 (< 11 Neg, 11 - 19 Indeterminate)
ANTICARIDOLIPIN ABS IgM - < 10 (< 10 Neg, 10 - 19 Indeterminate)
ANTICARIDOLIPIN ABS IgA - < 13 (range 0 - 12)
Sjogren's AB SS-A/SS-B - 18/11 (<100 is neg for both)
Antiextractable Nuclear AG RNP Antibodies - 18 (<100 Neg)
Antiextractable Nuclear AG Smith Antibodies - 9 (<100 Neg)
Lupus Anticoagulant Reflex - PTT-LA 38.2 Sec (0 - 50 normal)
Lupus Anticoagulant Reflex - dRVVT 35.2 Sec (0 - 44.5 normal)
No lupus anticoagulant was detected
CCP IgG Antibodies < 1 (1 - 5 Neg)
Complement C3, Serum - 120 (90 - 180 range)
Complement C4, Serum - 23 (9 - 36 range)
Complement, Total (CH50) - 60 (22 - 60 range)

Saysusie
12-04-2008, 07:55 PM
Your tests do look good and would probably make most doctors feel that, whatever auto-immune response was happening before is not happening now. I know that you do not want to have an illness and I'm not trying to say that you do. But, this phenomenon happens sometimes with Lupus patients. Our numbers can be off the charts in one month and then show up all negatives the next.
Our disease is one of relapse and remission. When we go into remission, our numbers can be normal. There is no way to predict how long our period of remission will last. For some lucky few, remission lasts for years and years.
If you were in the midst of an auto-immune disorder previously and are in remission now, I do hope that your remission lasts forever!
Your lingering symptoms may be due to another issue. Perhaps Fibromyalgia or something similar. I cannot say, but it is something that you should keep after your doctors about!

I wish you the very best
Peace and Blessings
Saysusie

bluedotsmom
12-05-2008, 07:30 AM
Saysusie, thank you for your reply.

I just love the kindness and support I've seen on this board!!!!

If I recall correctly the rheumy did say that there is an "autoimmune process" present. So, there is something going on and perhaps it just flared (I have been under a ton of stress since March this year.)

So, I will keep reading and praying for those here. Will take care of myself and will be sure to take a notebook when I go back to the rheumy in March.

Hugs to all!!!

Saysusie
12-07-2008, 08:14 PM
You are welcome and doing just what you listed can be one of your best defenses against an auto-immune disorder. Please know that you can always ask us any question, ask for any information, or just vent with us. We are here to help and to support you.
Keeping a journal of symptoms, meds, and questions is an excellent way, that many of us use, to have intelligent conversations with our doctors and become pro-active in our care. Keep doing what you listed and we will always be here to help you to help yourself :lol:

Peace and Blessings
Saysusie