There’s nothing like family

Julie, You are a Beautiful Person-No matter what?

Julie,
I love it , you know how to make the best of things with words.
Tim is right, you are a beautiful person and your special to us here on the forums, hair or no hair.
Go for the santa hat, it fits your personality! 😀
Stay Happy

Yep, families will do that to you. You just gotta love em’ 😮 It sounds like you are handling it better than I would have though. I might have decided to fling mashed potatoes at my sister in law if she would have done that to me. LOL!

For the hair loss, have you tried Rogaine for women? My step-dad started to get some hair thinning & he tried Rogaine for men & it’s really made a difference. He’s been using it for a year now & he looks good.

Merry Christmas!
Kelly

Julie,
Sounds like your having a down day, with hubby sick and your freezing.
In the long run it doesn’t matter who cares as long as you care about yourself.
I lost my beauty some years ago, it was replaced with wrinkles. 😮 The only time it bothers me is when I look in the mirror! 😮
Hope your husband feels better soon and you get warm.

Gidday Julie,
I too have had hair loss post CIDP. It has been on the areas worse affected by CIDP. From my knees down – the hair has fallen out – which as you would agree isn’t a problem – no more shaving to worry about 🙂 (which I couldn’t reach to do anyway). Also, my face is affected (as you know) and I’ve noticed my eyelashes have fallen out! (they were always short anyway). In addition, around my hair line is thin as well. When my CIDP isn’t playing up, I do have regrowth (especially hairline and eyelashes) – so I hope that offers some comfort. I told my Neuro about the hair loss ages ago now and he wasn’t surprised – he had heard of it before – he did explain why – but I have forgotten, as usual.
When I had my hair cut about a month ago now, the hairdresser asked if I had been unwell – I asked why – and she said my hair wasn’t healthy looking and was very fine and brittle especially around the hair line. She told me to sleep on a satin pillow (to help prevent breakage) and to keep my hair trimmed regularly.
I hope you are able to stay warm and know that others are thinking of you 🙂
It is quite hot here – I had a small snake trying to get into my house last night under the gap (it’s quite a big gap) in my back door! I am going to have to try and fix that gap today somehow??
Kazza

Hey Julie!
Sorry about the hair!! My hair is all I have going for me, being so FAT. So… if I ever loose my hair, I am going to make a trip to Sally beauty Supply. They have some awesome hair extensions that get fastened with a hair comb to your own hair at the scalp. I think they are made by Paris Hilton, and we all know she has some overprocessed thin hair from all of that bleach. Besides, you don’t really think Shakira or Christina Aguillara have real hair on their heads do you. I say go for the extensions!!! Maybe you will get some benefit out of this like the previous post and not have to shave your legs anymore!!!! See ya later woman!!
Dawn Kevies mom

Julie! I had an experience a few years back when I was taking alot of meds and my daughter has brown hair and wanted to be blonde and I have always wanted light brown hair. So we decided to both dye our hair!
She went in one bathroom and I went in the other bathroom and as soon as I start the dye process, my hair starting coming out in clumps. Ohh my gosh!
I panicked and jumped in the shower as fast as I could and started rinsing the hair in hopes to remove the dye. LOL!
I was seeing large amounts of hair falling out. And the light brown dye was turning my hair black. I mean black black! My daughter gets finished and she comes to my bathroom door knocking and said ” Mom? Are you alright?” I tell her I am fine but was not fine. My hair was falling out. I did manage to save alot of my hair by jumping in that shower when I did but coming out of that bathroom looking like Elvira was rather embarrassing! It was in the dead of winter too and I had this very long black trench coat I wore up North because of the bad winters there.
My neighbors certainly got a good stare. I looked like one of those Gothic Chics back then. Black hair and black coat. All I needed was the black lipstick!
I remember going to bed that night and I could think of was me waking up the next morning looking like Mr. Clean! Completely bald and no hair.
Take my advice! Please don’t dye your hair if it is thinning out because of the meds. It will make you go bald like I almost did! LOL!

And there is an old saying here: Beauty is within a person. Not what is on the outside! But what they have on the inside! You are beautiful no matter what happens to you. It’s your spirit that is beautiful. Your personality. Looks even though we all wish to have it is nothing. It is what we have inside us that makes us beautiful.

I had long blonde hair back then and ended up having to get it cut. It made my hair look thicker and didn’t show the thinning as bad. You might have to get your hair cut and start over. And you may have to get a wig. But hair has nothing to do with a person. It’s their personality that makes them beautiful. I see what is within a person and not what they have outside.
Our bodies are just a shell that we have to live in! But our personalities go far beyond that shell! And you have one thing that many people don’t have. You have the beauty within you!

I have learned one thing in life by seeing the reactions of people. When a person is chronically ill, they become the strength for others by giving support and understanding. For they have walked that path that you are walking in now. You give your support and understanding and you give your time to help another in need. God made us special because he chose to let us help others in need.
A normal person that has never been sick does not see the things we see. The true beauty of a flower is a gift from nature and when we see that flower we appreciate all it stands for. A normal person with perfect health walks by the flower and does not even notice it! They at times have an ignorance to them. They can walk the street and throw their trash on the ground and not have a care in the world. We on the other hand will pick our trash up and not throw it on the ground because we see the beauty of our world in a whole different light!
I just ignore those that have the ignorance in them for they do not understand. But I forgive them also. For one day they too may have to walk in our shoes and will see the light that we see.
You are beautiful Julie! No Matter What! You have something inside that nobody can ever take away! Hugs my friend! Hugs
Linda H

Julie,
When I first met my wife, I noticed that her mother’s hair was “thinning”. Carolyn in now about the same age as her mother was then. I actual have no idea if her hear is thinning or not. We have aged together and I still think of her the was she was when were were married. Of course I know we have both have aged, it just that I married Carolyn because I loved who she was as a person not what she looked like. I think you husband probably feels the same. If that’s true, that who cares what anyone else says.

Julie,
You are beautiful inside and out.

Stacey

I’ve lost quite a but of hair–mostly from the pred, but some because I also have an underactive thyroid. Luckily for me, I had a lot of hair to start with.

But have you considered henna to dye your hair? Or some other vegetable dye? I’m not saying you _should_ dye, but using something more gentle and natural than the usual stuff might be the way to go. Those Paris Hilton extensions sound pretty good too 🙂 –don’t think I haven’t considered extensions for myself at times.

-Marie

Hi Julie,

I read on a previous posting that Grapeseed is good for hair loss.

I had substantial (not clumps) hair loss when I started IVIG but it has since settled down and is realitively mild now. When I read the post concerning Grapeseed supplements I immediately purchased and take (when I remember) Grapeseed Extract. I do not know if that is what helped or if my body is just adjusting to the treatments.

I also dye my hair and will continue for a few more years and I am much older than you.

Donna M

Julie,
I answered our pm. BTW, have you had your thyroid checked, the last responder brings up a valid point.
Dawn

[FONT=”Century Gothic”][COLOR=”DarkOrchid”]UGH! I am just SO LUCKY…I have hair loss too! I didn’t notice it much after the first few rounds of IVIG but the last time I had IVIG they ran it really quickly and ever since then my hair has been falling out in handfulls! I haven’t told my MD yet but I will see her in about a week.[/COLOR][/FONT]

[QUOTE=Julie]Gidday Kazza!

I just re-read this since we share so many commonalities re: cranial nerve damage and it is possible that my hair loss could be contributed to nerve damage – I’m sure that is the case for my patchy legs as that was happening before I ever had IVIg. I just don’t want to believe that for my head, playing ostrich again, because I am supposed to be getting better, not worse and I haven’t had any hair loss other than my patchy legs until the last few months. It shouldn’t make any difference to me but for some reason it bothers me more if the hair loss is due to the CIDP rather than the IVIg. I mean it REALLY shouldn’t make any difference because I can’t do a thing about either one but it does… Oh, and my eyelashes are more sparse than they used to be too but that’s no big deal, I rarely wear makeup and never wear mascara so I don’t need them. At least I had very thick hair to begin with, or rather lots and lots of fine hair, so losing 2/3 of it doesn’t look so horrible. But it would be nice if my legs shed their hair completely, rather than just in patches… how convenient for you! 😉

I will have to start paying attention to see if I get any regrowth or not. It’s pretty easy to tell when your hair is this long – if the brush fills up with one swipe it’s going to be a shedding day… if not, maybe we’re in neutral or growing something. That could be very interesting – long hair with little spikey short hair sticking up. 😎

Julie

P.S. Can I have your snake? I love snakes… was it as big as the one you sent me a picture of trying to get in your house?[/QUOTE]

Hi Julie,
My hair loss on my head has been around my hair line only (so, doesn’t seem to be what you are experiencing) – I always have short spikey bits sticking up from regrowth (again around my hairline) – and on my eyelashes. I had to get a magnifying glass out to look at the lower eyelashes – which are sparse. I don’t wear mascara either, so that’s probably why I didn’t notice that they had gone for quite a while.
I don’t know if you would want the last snake that was hanging around my house – it was fairly late in the day when I saw it – so am unsure if it was a brown snake (venomous). The pic I sent you was of a carpet python snake (non-venomous) that also lives around my yard. I fixed the problem with the gap under my back door – I installed a weather seal (all by myself!) so nothing can get under it any more. Another task done to tick off my never ending list of things to do!
Hope you are feeling okay 🙂
Kazza

Hey Gals,

On the hair loss, thing. I am not so sure about this. I had a spell several years back when I didn’t know anything was wrong with me but there was, My hair started thinning, and I developed a thin spot on top. Since then, it grew back. maybe it is the CIDP activity!, Stress, deficiency or even all of it put together. Who knows.

My daughter Kelly is 18, and is absoulutely gorgeous with a big head of hair. She has been so sick over me being ill that she is losing alot of hair and has developed IBS or IBD, we are not sure yet. She and I are very very close even for her being 18, she will still hold my hand in public. So you know the love is there. She doen’t care what anyone thinks. Stress is a killer, and when it doesn’t do that, it shows up in other ways. Just my two cents. With or without hair, I look at all people the same, and not just since I have been striken. Fortuneately, I had been smelling the roses long before I knew about this CIDP. tim

I don’t know which is worse. Going bald and being stuck with a wig which is easy to do but so far the only thing that has ever made me loose hair was when I used hair dye. Possibly medications made that happen! I got my hair back now.
But then the most embarrasing thing to me is loosing your front teeth and having to get them pulled before you get a partial first. Now that is really hard dealing with. You see your youth going into old age!
Hugs

Hey Julie! Do you have CIDP or did you have GBS! Reason asking is that if you have Lupus this might explain the nerve damage going on meaning you may have CNS Lupus!
I have the Raynauds, the Rash and when I first got sick I saw the borderline ANA’s with a Speckled Pattern.
Lupus causes Hair Loss in some patients, Joint Pain in several joints, Lung Pain, Fatigue, IBS Irritable Bowel Syndrome, Headaches, Low Grade Fevers and a whole lot more. Sounds to me like you have Lupus. Scleroderma normally causes far more worse problems like skin hardening around the fingertips, the lips will get all dry and crackly. Hands will draw up making it hard to move them. You sound more like Lupus. But many patients with Lupus also have Srogrens Syndrome also.
And sometimes a medication you are taking can cause Drug Induced Lupus which will go away once the meds are stopped. Look up Drug Induced Lupus and it will give you a list of drugs that can cause it! You might be on a drug causing Lupus. If not then it looks like you may be in the beginning stages of Lupus.
Need my advice just let me know! Have had this disease a very long time! Can tell you all about this disease! Hate to hear this but I have been suspecting it with you. Just sounded all to familar! Hugs
Linda H

Hey Julie! That marbled look! Is it showing up on your legs too? Covering your body in alot of areas. Kind of like splochy looking skin. If so it probably is Livedo Reticularis! I get the Lupus rash too on my cheeks at times. Mine is very mild and it can barely be seen but I notice it! Looks like 3 small bumps on my face but are fine bumps. But they always have a weird butterfly look to them.
I think that Rheumatologist may be your best bet and the next time you get that rash you get a skin biopsy! Just want to let you know that if your labs come out normal, stick with that Rheumy and don’t give up. Once a person gets an ANA with a speckled pattern they usually do have a Rheumatological Disorder. And in order for it to be classified as Lupus you have to have at least 7 out of 11 Criteria to be considered Lupus. So it may take a while before you get diagnosed as having Lupus. Same goes for Scleroderma. But then you might just have Mixed Connective Tissue Diasease that mimics all three symtoms. Not being Lupus or the other diseases but Mixed. Keep me posted on this! Any questions you are sure about let me know. Even if it means a phone call! Hugs
Linda H