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skyhawk747 10-04-2018 07:39 PM

Positive ANA (1:32) But no diagnosis?? UTTERLY confused!!
Hi all, I was wondering if anyone can help me? I had a hair transplant last year (Aug 2017) that failed after 8 months and I've been experiencing general significant hair loss the past 4 months. (Not alopecia) I had the hair clinic redo my transplant this past Sept and it looks like it's failing again and I am experiencing significant hair shedding. I was advised by the transplant clinic to go see a Dermatologist to check for any underlying conditions as they were very confused.

I saw a Derma 1 week ago and she took a biopsy and screened me for ESR and ANA as she said I may well have some kind of Autoimmune disease. Anyway, the ESR came back negative but the ANA positive 1:320 homogenous. She then said "Ah this could be causing your hair loss if you have an ANA"

I was referred to see a specialist and he looked at me and said he was confused. He stated the reading for ANA was not high and the only thing it could really be is Lupus under that homogenous tree. He was confused about because I have no joint pain, no swelling, no rashes nothing! He said Lupus affects mainly women and is quite rare in men my age (49) and when it does show in men my age it normally presents itself as text book Lupus. He said I was not showing any signs of cutaneous Lupus or Mixed connective tissue disease, so he was confused. He ordered the Lupus Panel blood tests and said this would help determine if it was indeed Lupus.

I had a multitude of tests done:-

Scalp Biopsy
C3/C4 Beta Complement
A range of thyroid tests including antibodies
ANA Profile (Lupus Panel)
Testosterone RIA
Testosterone Free

The scalp biopsy was normal and all the blood tests came back negative, most importantly the Lupus panel. I asked him does this now rule out Lupus and he said yes. He has asked me to go back in 12 weeks to have the ANA level tested again. He told me some people test positive for ANA but don't have any Autoimmune diseases and that it's very unlikely this is causing my hair loss as I have not tested positive for anything.

I am absolutely confused to hell as to why my hair is still falling significantly. My Derma says she is confused too as I've been on 1mg of Propecia for 2 years which is now increased to 2mg and I am using minoxidil for my hair for the last 18 months. She said this should STOP all hair loss and in theory cause hair growth!

Can anyone help me as to why I would test positive for an ANA test (1:320) yet show zero symptoms apart from hair loss and show negative on so many blood tests including the lupus panel?

Sorry for the long post by the way :-)

MSNik 10-05-2018 03:15 AM

Re: Positive ANA (1:32) But no diagnosis?? UTTERLY confused!!
Are you having any other symptoms? Balance? Walking? Rash? Itchy skin? Muscle spasms?

There are hundreds of other autoimmune diseases which could give you these results. MS, Polymyalgia, Rheumatoid Arthritis..

Because of the type of testing you had done, I would either see a neurologist or a Rheumatologist to get further checked out. A dermatologist is not equipped to give you a dx of Lupus or anything else.

skyhawk747 10-05-2018 04:32 AM

Re: Positive ANA (1:32) But no diagnosis?? UTTERLY confused!!
Hi MSNik, Thank you kindly for your reply and help.

No symptoms at all regarding Balance, skin etc. However I do suffer tiredness, I put it down to laziness and have felt like this for years and years. Also. about 8 years ago I was experiencing fasciculations all over my body, I got very nervous thinking I had ALS or MS and so I went to a Neuro. She performed a multitude of tests, NCV, EMG, Brain MRI, EP tests and a lot of other stuff for MS. All came back normal and so she put it down to BFS. She said I did not have MS or ALS. The twitches then stopped and I kept having a brain MRI every 2 years at my request.

Back in April I had lots of fasciculations again all over my body and went to a different Neuro. He gave me a clinical exam and said I was not symptomatic of anything else and assured me I had BFS. I kept pushing him with concerns so again he conducted an NCV and EMG, all normal. I asked about MS and he said because I had regular MRI's of the brain over the past 10 years (last one 2 years ago) and my EMG etc was normal he was not considering MS or ALS.

I did have numbness in my fingers 3 months ago that was getting worse and the NCV/EMG showed Carpel Tunnel and I had that operated on and fixed.

The specialist my Derma referred me to was indeed a Rheumatologist and he was the one who got the Lupus panel done. I asked him could this be Rheumatoid Arthritis and he said he highly doubted it as my ESR levels are normal as well as all the other bloods and I have no joint pains or swelling at all.

I think it's weird I have a 1:320 ANA test yet so far nothing has been diagnosed. I have also had a ton of hormonal tests all done for my hair and today they all came back normal! As well as the one for Graves disease

Arghhhh! I am confused as hell.

So you feel this could be MS?

lala52 12-29-2018 06:26 PM

Re: Positive ANA (1:32) But no diagnosis?? UTTERLY confused!!
Have you thought about lyme disease. Some of your symptoms sound like lyme.

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