Newbie - Haven't been diagnosed, need some advice!

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New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/10/2013 10:38 AM (GMT -6)   
Hey everyone, I'm a 26 yr old, very active female and have been having some weird symptoms as of summer 2011, that come and go. I appreciate anyone who takes the time to read this and tell me what you think!

It all started with hair loss. I was suddenly losing (diffuse) well over 100 hairs a day and up to 300 on hair wash days. Normal for me until that point was maybe 10 in the shower, and I only had to clean off my brush once a month. I went to my dermatologist who suggested TE or temporary hair loss due to the loss of my mother (but that was a yr and a month prior to the onset of hair loss). Since it had been falling for 2 months before I went to see him about it, he told me within 4 more months it should start tapering off, which it did. However, in the middle of waiting for it to stop, I woke up one morning with my left side feeling numb. It was weird, I propped my pillow up to read one morning before getting out of bed, and 30 min later when I lifted my head up I felt a painless zing go up my scalp and suddenly my left side went numb. It wasn't too noticeable, just something I felt when I touched both sides of my body. The left had slightly less sensation. I went to the med clinic because it was the weekend and they told me to see a neurologist. At this point I knew he was thinking "check for MS". The neuro then blood tested me and had me to do some MRI's and it was all normal. Including my ESR on blood work. By this point, this was the second time my ESR had been normal because my dermatologist took blood for my hair loss initially as well. Numbness went away after a day, and even though my tests at the neuro was normal, I developed other weird symptoms. I had a rash on my body that I later noticed only came on when I was anxious (not butterfly rash), purple-ish finger tips only once, and only one morning did I experience a pain in my fingers when I stretched them out. Every since then I haven't experienced any of that, and it was in the fall of 2011. I then wondered if because I got so anxious and hyped up about the possibility of having MS that my anxiety brought that on? I've yet to discover if those were a symptom of something, or if it was anxiety driven.

I was fine for months after that. Symptoms went away when I started to calm down and accept that all the doctors I saw couldn't find something wrong, and my hair loss stopped by the predicted timing of my dermatologist. I thought everything was going to be GREAT. Then several months later in August 2012 I woke to a horrific nerve pain. I felt like I was being shocked in my left calf. It was excruciating, and only lasted that day. Ever since then though I've had little twinges or nerve pain and pin prick sensations, ear ringing at times that manifests itself in different ways, muscle twitches...these sx come and go but have stuck with me. My hair loss started up again at this point and lasted yet another 5 or 6 months. I didn't even have an adequate amount of time for the hair to grow back in from the first time before this one started! NOW as of June 2013 the hair loss has yet AGAIN started up. It's coming out so much. I had beautiful hair before, now it's getting so thin. I know if this were to happen again I'd have to shave my head which is so traumatizing and depressing for someone my age especially. I've lost so much hair. I saw hair re-growth after the first time I had the loss, but after the second and current time, I don't see those same obvious signs of regrowth.

I had a total of 4 or 5 blood work done between 2011 and 2013. ESR was always normal. I had blood work done in Nov 2012 by my then internist and my T3 for thyroid was low. I brought it to my new internists attention last week and she told me that they look at TSH not T3 so she didn't see it as a concern, but she'd re-test me anyway. I just had new blood work done, and my TSH and T4 were normal but she didn't test my T3 again. My CRP was elevated, which from what I understand is similar to ESR. They told me to come back in next week because it's a sign of inflammation or infection.

I guess what I'd like to know is are my symptoms characteristic of Lupus? I really only suspected Lupus because of my hair loss. I don't know of many other autoimmune diseases that could cause hair loss besides hypothyroidism, and alopecia areata (I don't lose in patches so I know it's not that). I just know I can't sit and wait for this to stop anymore. Now that my blood work wasn't all perfect I'm freaking out because I can't find one thing that fits what I'm dealing it. I was always hoping it was just something weird in my body that would correct itself and go away, but now I know it's not. I can't afford to lose any more hair. I HAVE to get it under control (and my other sx of course), asap!

Post Edited (AnnaM86) : 8/10/2013 9:45:13 AM (GMT-6)

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 8/10/2013 11:11 AM (GMT -6)   
Ok, I see reference to a dermo, internist, neuro - is there a rheumotologist in the mix somewhere? The rheumy would be the one to test for auto-immune illnesses.

Lupus is diagnosed by having 4 of 11 symptoms - see the link in my signature for a list of the symptoms. Lupus can cause hair thinning, but it is more often because of a med rather than the Lupus itself. Hair loss is not one of the diagnosing symptoms.

Other things I know of associated with hair loss - thyroid issues, Vit B12 deficiency...

I think I'd ask for a full workup by a rheumy.
Best wishes.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/27/2013 2:31 PM (GMT -6)   
Get a real good rheumy. I have Dermatmyositis / Polyomyositis with an overlap of Lupus. Took two rheumy's and my research to find out what I have. Started years ago, I had symptoms I just overlooked for years. The first was waking up with my whole right side numb, crazy feeling, scared me to death thought I was having a stroke. Lot of odd symptoms, just overlooked. Photosenstive, I tanned through my clothes, heat of any kind burnt me up couldn't stand the sun to hit me so I started wearing coats in the summer to protect myself. Scalp itched so bad. Lost most of my hair. Then the rash and the butterfly rash on my face, the purple color around my eyes, my ears looked like and felt like I had been burnt. Fingers turned blue if it was cold. Skin got so dry-scaly looked like the desert. I could go on and on. Kinda diagnoised myself with the help of the MERCH manual. Research on your own. Good Luck!!
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