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Forum: Autoimmune Diseases and Disorders

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  #1  
October 20th, 2010, 11:56 AM
punktart's Avatar Mega Super Mommy
Join Date: Apr 2008
Location: Texas, USA
Posts: 1,869
I've been on this site for a while now (active in Dec 08 PR) and have just come upon this section of the site.

At the end of Aug I have routine bloodwork come back with my WBC count severely low. (2.6 if I remember correctly) and was sent to a rheumatologist. Had more bloodwork (14 vials!!) and xrays done and came back postive for Sjogren's Syndrome. I had a tiff with my rheumy and switched, so got a new one.

Went to the new rheumy who ran way more bloodwork, xray and an MRI. Bloodwork came back with a positive ANA this time (which made her suspect Lupus) and she also said that I have all 18 tender points for Fibro. She also suspects Multiple Sclerosis, since it runs heavily in my family and I'm having neurological symptoms. So, now I sit and wait on the MRI results.

My next appt is Nov. 8th and it can't come soon enough. I need some more answers. Right now my meds are Plaquenil, Lyrica, Cymbalta, Ultram ER, Relafen, Abilify, Synthroid, Klonopin, Lunesta, and Rx strength Vit D3.

I'm willing to answer any questions you may have about myself and would love to get to know you all a little better. Or at least tell me this journey gets a little easier....?
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Ashley
Wife to Micah
Mom to Caleb & Mischa


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  #2  
October 28th, 2010, 12:51 PM
alethia's Avatar Platinum Supermommy
Join Date: Jun 2007
Location: Phoenix, Arizona
Posts: 18,623
I'm sorry you're going through so much right now. I know how hard the diagnostic process can be and how it feels like forever between each appt!! I really hope you don't have MS! Hang in there!
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  #3  
October 30th, 2010, 09:19 PM
EmG EmG is offline
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Join Date: Aug 2010
Location: Reno, NV
Posts: 741
Hi Ashley! First I want to say that I am sorry you are dealing with this. My name is Emily and I was diagnosed with auto-immune kidney disease 6 years ago and was finally fully diagnosed with Lupus last year. I think the toughest part of dealing with the chronic conditions like these, is the waiting game where no doctor can really tell you exactly what is going on...it's always a wait and see...one more test type of a thing.

I can't tell you how many times I switched doctors because I didn't mesh with them. One doctor once told me I just needed to exercise more! Yeah, I would love to do that if you could get the swelling in my toe joints down! LOL - I definitely didn't go back to him.

It's VERY important to have a doctor that you trust and that you can tell cares. I learned the hard way by being walked on by doctors that didn't really care, only to find out at a free clinic that my kidneys were in trouble. Why couldn't my docs figured that one out???? But when you've found the ones that care, you'll feel more confident in the care you are receiving and in their diagnosis.

As time went on, things got easier. Coming to terms with the fact that I would never be back to my 'normal' helped. Also learning your limitations helps. Finding out how much rest your body needs is a good idea to do. I never try do over do it. Even if I really want to stand on my feet all day and make an extremely fancy dinner for guests and clean up after them when they leave. I always pay the price the next day. And sometimes the next 4 or 5 days! Learn your limitations.

Good days come and go. Take advantage of good days...but not too much or you could end up with REALLY BAD days.

As you go along you will learn what works to keep you feeling decent.

I had been through 2 years that I thought were pure hell. Six months of chemo. A year of Prograf (which my body didn't tolerate really well but was helping a bit with the kidneys) And finally the miracle drug IMURAN (miracle for me because my doc didn't want to give it to my since another drug hadn't worked she said this one would work either) So anyway the doc finally decided to try it. And with the lowest dosage possible, I was able to be in a full remission. Which I have maintained for 9 months now! And I am currently off all of my meds. Mainly due to the fact that I am expecting #3 Due May 6, 2011. I never thought we would have any more because of my kidneys, but my nephrologist says its a safe time now, so we went for it.

Since I am typing this under the influence of Ambien, I'm not going to go back and reread what I wrote, but I will say that the thing that has helped me the most is that I have a positive attitude. That has helped me get through many things over the last couple of years. And as for it getting easier? It has definitely gotten easier for me to deal with it as time has gone on. But I definitely understand the frustrations and anxieties while your trying to figure out what exactly is going on.


PS I will come back in the morning (If I remember) and make sure my druggish writing made any sense!
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*Thanks to Jaidynsmum for my beautiful siggy!*
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