Hey there kiddo! I hope you have been doing ok havent heard from ya in a bit...I have had same problem in last 2 years as my prednisone has gone down also.....Dont know much about rogain so cant help ya there but would ask doc first before using...As we know, never know what may exacerbate MG!!!!! Sounds funny but I asked my hairdresser if she had any ideas and usuallly get hair colored, now just do roots, and she recomended a shampoo Pantene makes, says repair/protect on front...So I said what the heck Ill try it....Well believe it or not have seen a big difference after using for about 2 months now...! Still fallling out but like 50 percent better so will continue to use.....Let me know what you find out and maybe someone else here has other ideas....But hey shampoo doesnt cost much and worth a shot right? Good luck and have missed you and again hope you are WELL....Hugs Jacki

Hi Jacki,

I haven't been on the forum much, and it's probably just where I should be, since I've been battling such fierce discouragement, and my self-esteem has taken a total nosedive. Ugh!!

Not only am I losing my hair, still very weak, struggling to breathe, and always hoarse, but I'm also up 50 lbs from the pred, and having to work really hard to get a decent diagnosis, since all the "ologists" keep passing me off to the other one to figure it out. This, because I continue to test negative on all the blood and muscle/nerve tests.

This week though, help came from unexpected places. My primary care doc got involved and is going to help me get in to see the neuro who treats a lot of MG patients in the area, and......I went to get some new glasses, and the optometrist said he noticed significant eye weakness, and recommends I see the opthomologist. I've never tried that route since I don't have ptosis, so maybe between the two new "ologists" I can finally get a diagnosis, and get on something besides just prednisone.

Sorry if that was totally off topic and way more than you ever wanted to know....I just wanted to tell you why I've been hiding out.

Blessings to you Jacki.....your compassion is always brings such a welcome boost.

Tamara

Hi there again..So sorry you are going thru all this..Believe me I know myself and many others here have been thru the same....This disease affects us physically and mentally.....! I to went thru many "ologists" before I found my great neuro who dx within 2 days and was on treatment plan.....I also go to an optomologist every year, important for eyes especially having MG and taking prednisone...I have to get a new script every year and cant see a darn thing without my glasses....Plus more apt to get cataracts or glaucoma..So I think you are on the right track with both ologists! Ha I like that word....I feel good you are gonna get an answer and be on your way to feeling better....!!!!!!! I have had badddd stomache issues since taking mestinon, now am off it, so been to dr after dr and no better yet...And my mental state not always great so go now to a psychologist and a anxiety group...Need the help sometimes...Ya know my neuro when she first told me of dx etc said "jacki you will never be the same person that you were". Didnt know what she meant but sure do now...Changes your life but the good part is we have to be happy for things we have and try and do as much as we can..I have problems doing that hence the shrink! So we need to change our life to live around it and still try and enjoy....So NEVER GIVE UP my friend better days are ahead..........Keep in touch....BIG HUGS Jacki

Jackie,

I can so relate to how it feels to have a changed life. I started crying this morning as more chunks of hair came out while combing, and then I stopped, and reminded myself that there are lots of folks losing hair to chemo or some other treatment, and at the same time are afraid they may not live much longer. As frustrating as MG can be, I have to be thankful that I'm not facing the end of life because of it. And, if botching else, I sure have a lot more compassion for those who suffer.

Thanks so much for reaching out to me. You hang in there too Jacki....you are a true gem!!!!

Tamara