Reply
Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010

Sufferers of Lichen Planopilarus or Telogen Effusium.....

[ Edited ]

Hi Everyone,

 

I was asked under a different thread to contribute information to these two diseases/disorders, which I could have done, but recalled a rather buff thread over a year or two ago in which a number of you who suffer shared some wonderful information on your experiences.

 

LTT1 is in the process of being diagnosed, with many labs, etc., being run at this time.  I've indicated that I'd be starting a new thread for her, as I recall how wonderful the last thread was.  And, yes, though I know I could try and search for the old thread, I chose not to, because clinically things are moving fast these days and I wanted to make sure that those of you with input would include your most recent experiences.

 

Thanks so much for helping LTT1 better understand what's ahead for her.  I questioned the diagnosis of her suffering from both, as they both result in hair loss, etc., so am wondering whether her derm is looking for a differential diagnosis.

 

In any case, thanks again for any input you can provide.

 

~Rebecca

Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

@sfnative

 

Thank you so much for starting a thread!

You went over and above the call of duty!

~Have a Kind Heart, Fierce Mind, Brave Spirit~
Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....


@LTT1 wrote:

@sfnative

 

Thank you so much for starting a thread!

You went over and above the call of duty!


@LTT1

 

You're so very welcome!  And, thanks for letting me know about your change of name.  Never occurred to me.

 

My word, you do not need to add to your list of diseases/disorders.  If I recall, you're already suffering from another or several auto-immune diseases, correct?

 

Thoughts and prayers coming your way.

 

XXX ~ Rebecca

Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

@sfnative

 

Thank you again!

I have only a bunch of “little” things... nothing major diagnosed until now.💗

~Have a Kind Heart, Fierce Mind, Brave Spirit~
Honored Contributor
Posts: 19,658
Registered: ‎03-09-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

@LTT1

 

I'm glad to know you were 'lovestoteach' too, I always enjoy your threads/posts and I'll know now to look for your new name!

You never know how strong you are until being strong is the only choice you have.
Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

@KingstonsMom

 

Thank you!

I hope my doing this, changing it, doesn’t create confusion!

~Have a Kind Heart, Fierce Mind, Brave Spirit~
Respected Contributor
Posts: 3,113
Registered: ‎09-30-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

@KingstonsMom   @LTT1   Hi, at Loves to Teach, glad to know you just have a new nickname and hadn't gone away.

Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

OP Here,

 

Still looking for input from those afflicted with either of these diseases, as help for LTT1.  Please do post your experiences.  About 1.5-1 years ago, there was a great deal of discussion regarding L. Planopilarus, so am hoping that some of you will return and share.  Thanks!

Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: Sufferers of Lichen Planopilarus or Telogen Effusium.....

@sfnative 

 

Thank you very much for your help in this!

 

My bloodwork is finished and the derm (who I have much confidence in) saw low iron levels and rx’d Fergone (OTC) 27mg.

 

Signing up for FB groups and Google searches have revealed the rarity of of Lichen diseases.

 

The people who do get this seem to find that their doctors are clueless, too!

 

I feel fortunate that with all of my symptoms, my derm seemed fairly certain of what he was seeing.

 

Iron deficiency leads to headaches✅ fatigue✅ dizzyness✅ (vertigo beginning November 2017) pale skin✅ loss of hair (everywhere) ✅ 

 

The crazy date all of this got way worse began with a flu/pneumonia shot. But low iron could have played a role in that too!

~Have a Kind Heart, Fierce Mind, Brave Spirit~