My three year journey has been quite the surprise. A simple urinary tract infection turned into three years of a hair loss battle.
Now as most women understand, hair is a huge part of our lives. Most times it defines us. This is the case for me without a doubt.
I had amazing very thick healthy hair. I also took very good care of my hair. Yes, I used hairdryers and a flat iron but was always careful not to burn my hair.
Two days after I finished taking the medicine given to me for my urinary tract infection I noticed something different. I noticed after styling my hair there was so much hair on the floor and my three year hair journey began. Now, having strands of hair falling out when styling isn’t uncommon. But this was troubling because it was a lot of hair.
My First Move To Find An Answer For My Hair Falling Out Was My Salon
My first move was going to my hair salon to speak to the girls at the salon because they are very knowledgable about hair. I felt confident going to them because they take classes constantly to stay up to date.
After meeting with the girls they thought something was definitely up with my hair.
I Have MS And Am Taking A New Biolgic For My Illness
Because I have MS and I began a new biologic, our first thought was maybe the new drug is the cause.
However, after speaking to my MS doctor in NYC he assured us this wasn’t the case.
He believes it is caused from a drug interaction with other drugs I take for other reasons.
In the meantime panic and truth, hysteria set in because my hair wasn’t only falling out. It began ripping out of my scalp when brushing it.
Seeing Two Dermotoligists For This Issue
Next move was going to a dermetoligist to see if I was able to get some answers.
After visiting our local dermotoligist, she perscribed cortisone for me to massage into my scalp.
In two weeks time I lost every single hair on my head, my elelashes and eyebrows. So now we knew something was not right at all.
Again we went back to the dermotoligist and she said it’s Alopecia but believed my hair would grow back. By this time, I also was told to begin using Rogaine.
My hair began to grow back, however, I got sick and it fell out again. Our dermotoligist didn’t feel comfortable treating me because of my MS.
She recommended a doctor in NYC that works for Columbia. So now, another opinion and into the City we went.
By this time I began wearing a wig. Its a beautiful wig and my hairdresser cut it exactly like my hairstyle.
But I said to everyone I am not going to accept this ever and I mean ever. At 53 to wake up and lose your identity was unacceptable.
When I visited the doctor in NY these were the first words I said to her. She said she agrees with my MS doctor that it isn’t my new biologic. She actually said one day, I don’t know when, I believe your hair willl grow back. Of course me being me thought okay maybe a few months it will begin to grow.
There is a drug she can give me and my hair would grow back in six months. But because of my MS drug she won’t do it.
She gave me cortisone and said to continue the Rogain twice a day. Rogain is the only thing clinically proven to help this situation.
Why Don’t I Wear My Wig
Most ask why I don’t wear my wig? Well, I don’t because my hair is trying to come back and it’s incredibly itchy. Wigs are also very hot.
Because of COVID I haven’t gotten it styled either. It’s a bit of a mess. I am going to try to get it styled and wear it to do my YouTube videos.
So for now, I wear winter hats by Furtalk on Amazon with cute pom poms.
Three Long Years Later
A year ago I did notice that my scalp was beginning to tingle with the Rogain. It never did this before so it gave me hope.
So after 3 years, my eyelashes have grown back with great results. My eyebrows have grown but are mostly light gray and couldn’t be seen until six months ago and they are still filling in now.
I have hair on the back of my head. We are also seeing growth on the top of my head. So we are hopeful and the doctor is optomistic.
Wanting To Grow My Blog With My Hair Loss
By the way, during all of this I decided I wanted to grow my Blog. Now at first when I began blogging I didn’t want my picture taken because I am not photogenic.
To grow my blog I need to be recognizable. So I decided to add an old picture of myself.
I said to my husband, it’s funny, I didn’t want my picture taken before.
Now if my hair grows back my face will be on my blog, YouTube and Facbook. I guess I will see.
In the end I am going to make it work no matter what because sharing, creating, decorating, cooking and baking truly make me happy. I have also made some great friends!
55 thoughts on “My Three Year Journey”
I admire your fortitude and fight – wishing you continued success in present and future endeavors!
Cindy, my first thought when I started reading this was that you had alopecia. I’m so sorry that you have had to go through all of this on top of your MS. I know that you are a strong and beautiful woman and your ability to fight is amazing. Thank you for sharing your journey with us. Hugs, Laura
We are getting more optimistic because hair keeps growing.
Like I said the dermatologist in NYC thinks it will grow.
Say a prayer my dear friend
You ha.ve been through the wringer with your health. I am so glad that your hair is finally starting to grow back. Wigs are great but l only wear mine if I am going out to eat or going to an appointment.
What a journey you have been on. I am glad to hear that you are finally getting hair to grow back. I hope this will continue and you will not have any future issues. Life can really throw us some curveballs. I am also so happy you finally got a biologic that gave you back your life from the MS. Positive thoughts and prayers for you sweet friend. xoxo Kris
What struck me most about this journey is your attitude. Your positive attitude is wonderful.
I look forward to pics of youl
Thanks Carol. I believe my hair is going to grow back
My eyelashes did. My are turning dark.
Hair is growing on the back and back top of my crown.
I believe this is a long journey 🙏
Thank you for sharing your journey. I am sure that when you put your story into the universe it will be very helpful to others going through the same issues. Hugs to you, my friend.
Cindy you are a brave girl and a true fighter. I know how totally frustrating this journey has been for you and I’m so glad you are seeing some results. I agree with Libbie that sharing your story will definitely help others. Always thinking of you…and ps- I love seeing your face!! Beautiful! xo
I have loved getting to know you more! Your are one strong woman and I will pray that your hair keeps growing in and that you stay strong !
I’m so sorry to hear you’re going through this, Cindy. It’s frustrating when you can’t get any answers, but I’m glad to hear you’re finally seeing results. I’m looking forward to seeing your picture!
It was interesting to read your story. How shocking it must have been for you!! Have you tried a cute ball cap? I have done that in videos sometimes bc it is just so easy!
Thank you Liberty. It was very traumatizing.
Thank you for sharing! There are so many woman going through hair loss for many different reason’s. It’s wonderful you have this platform so you can share your journey. I know this helps so many feel their not alone! You have such a beautiful face and lovely smile this is what shines through to people.
Thank you for sharing your story. Sometimes it’s not easy sharing a personal struggle but I think your journey will be encouraging to other women.
Thank you Jennifer!
Cindy, thank you! For your honesty, and for being you. I am sorry for your journey and have hope as you do that your hair will come back. Your attitude is amazing for someone dealing with MS and other issues as well. This is what blogging is all about, sharing your story(s). I love a good recipe, DIY, trip but my favorite blog posts are about the people that write them. I think your story will help many and you as well. We get what we give.
WOW! You have been on a really hard path, Cindy. Dealing with MS and then with the hair loss. My hair is kind of my identity. It’s how the kids say they can find their family in a crowd. Long and white! lol. Praying for you to have more and more success with your health issues. xo xo xo
Cindy, thanks so much for sharing your story. I’m so glad to hear that you are having good results with the Rogaine. (My younger daughter who has autoimmune illness uses it too) My hair has thinned a lot since dealing with autoimmune disease. (Many people don’t realize MS is also an autoimmune disease) I’ve found it’s a combination of the illness along with meds. In my experience doctors NEVER want to blame a med for anything negative, especially hair loss. I take a Biotin supplement and I think it helps, but my hair started thinning when I started the injectable meds for high cholesterol. Then finding out I’m allergic to them and the infusion drugs. I’m so glad you kept vigilant in this situation. Take care and I’m praying you continue to improve. Being informed is a big part of the battle!
I agree with Debra that doctors never want to blame a med for any side effects…sorry, but they all have their hands in the pharmaceutical pockets. I wouldn’t be one bit surprised if the med had a lot to do with your hair falling out.
In the meantime, thank you Cindy, for sharing your story and I’m glad your hair is finally starting to grow back!
Oh Melanie you are so right.
My MS doctor will not change his opinion about the drug.
I will keep being determined
It’s funny my MS doctor won’t change his mind. He says it’s a drug combination.
It’s not my MS drug at all.
I will accept nothing but my hair coming back.
We see differences every 2 weeks now.
Thank you for your encouragement
Thank you so much for sharing your story with all of us. I admire your strength in such a difficult time – I know that you’re willingness to share will help so many people to know that they’re not alone. <3
Thanks so much for sharing your journey. I’m sure this post will help others who are struggling. Prayers for continued hair growth!!
Thank you Kim
You are a fighter, Cindy. Anyone who follows you knows that, as you are graciously open about the struggles you’ve faced. I’m glad that your hair is finally starting to come back – that is wonderful to hear, and I bet the fact that you said you just wouldn’t accept anything else was definitely a factor.
I’m telling you Amy, I won’t accept anything else.
It’s growing at a snails pace but it’s growing.
I believe when this happens doctors don’t always have the answers.
My lashes are amazing. I now have eyebrows where I never did. I was a plucker when I was young.
So we are optimistic more and more every week.
Cindy, I can identify just a bit with your hair dilemma. There have been times when I’ve lost a lot but it seems to run in cycles. I, too, take medication for an autoimmune disease so I attribute it to that. I’m so glad your hair is returning and you are very brave to share your journey. Your openness will help many others, I’m sure. Hugs and prayers!
Thank you Jane!
Hi Cindy, I have the same problem from my Lupus. I have often wondered about Rogaine and if it is worth it or not.?
And to tell you the truth I never even thought about asking my dermatologist. I have an appointment in the Spring and am definitely going to now. You have given me some hope, thank you!
My dermatologist in NYC said it’s clinically proven to work.
There’s a pill that works but with autoimmune issues they can’t give it to us.
Sorry you have Lupus
Cindy, you are a brave and courageous woman to share your story. I believe it is so important to share our stories with others as a way of helping others. Many will be touched by your story, as I have been 🙂 Blessings to you as you continue this journey. Hugs!
Cindy you are not alone. I too lost a lot of hair a few years back. I suspect it may have been from meds associated with diabetes. Thankfully it has stopped falling out. I know you will make a great recovery, thanks for sharing your journey with us.
Thanks so much Mary!
Thank you for sharing such an important story.
Thanks for reading it
Cindy, you are incredible person and I admire your strength and tenacity. Thank you for sharing your story. Sending prayers and well wishes to you.
Lynne, thank you so much!
You are blowing me away with your bravery right now, Cindy! Thanks so much for sharing your journey with us. I know it wasn’t easy at all. I’ve always admired your courage as you create and blog so beautifully while handling all the ups and downs of MS but this takes it to a whole new level. Love your heart and how you so freely encourage others, CoCo
Cindy, thank for sharing your personal journey. I know this post will help others out there that are struggling as well. I remember the day my beautiful mother-in-law called me crying when she began to lose her hair from her cancer treatments. Two of my girlfriends went through it as well. It would be hard to go through as a woman.
You are a courageous woman. Living with a disease is tough. Thank fir sharing to help others understand.
Thank you so much Tammy
I think we all associate our hair with our identity and losing it is so scary; especially when no one can seem to explain WHY! I am so glad to hear it is slowly growing back and will you keep in my thoughts and prayers that it continues to so. Thank you so much for sharing your story.
Cindy, I am so sorry to read about your hair loss. It is difficult because our hair is part of our identity. I am so glad you are a fighter. You have to be your own advocate. Doctors don’t know it all and there is always a different in opinions. I am hoping your hair continues to grow. I do know how you feel because I lost all of my hair with chemo years ago. Wigs are too itchy and hot. Hang in there. Hugs.
Thank you Linda. I will not stop until it’s back
Cindy, I didn’t realize you are living with MS. I’m really glad the Rogaine is working but there still seems to be a mystery surrounding it. We are our own best advocates so it’s important to stay the course and not be afraid to challenge opinions. I had a very mild case of alopecia when I was 48, but it sure scared me. My PCP dx’d me with hypothyroidism, but the timing coincided with perimenopauae and a very stressful life situation at that time. I still take synthroid and biotin (but only 300 mcg, not the megadoses so.many women take now). Best wishes for continued stability with both your MS and alopecia. Thanks so much for sharing your story. I guarantee it’ll help someone else.
I refuse to give up.
Cindy, while reading through older email on Gmail, I found this post… I am so sorry that you’ve been going through all this! How terrifying to just lose your hair all within two weeks… I’m glad it is trying to grow in and do wonder if the new MS drug is what is driving this hair loss (or reaction to it) ~ like my allergies, when the amount of allergens (threshold) gets pushed too high, then I have a major reaction.
My mother never liked her wig, either. It was hot, itchy and she just went with cute hats and scarves. She had lung cancer…. Please take care and I hope your doctor can figure out something to really help your hair come back. <3
No my new drug for my MS has nothing to do with tge issue.
I’m not giving up!
😊 Good to hear!
p.s. Has your thyroid been checked? Both my MIL and sister-in-law (her daughter) have thinning hair as a result of hypothyroidism (lack of thyroid hormone, as opposed to hyper – the opposite).
Just a thought…
If I didn’t have MS, I’m very healthy