What a Great Evening!

Just wanted to mention that we are in Chicago for an appointment, and we were able to meet Brain Pain Mom (Jennifer) and her daughter Crystal last night. Had a great dinner out together! It was such a joy to see their smiling faces.

I'm so glad Jennifer found Ronda's and because of information shared and a good neuro who listenened, testing was done on Crystal and a diagnosis was made--intracranial hyptertension. Successful treatment thus far allows Crystal to smile and get some of her life back. Way cool!

I'm just to thrilled!

How we need to hear success stories. I hope Crystal continues to get better and that her pain is driven down to zero.

It certainly was exactly what Anna needed after a long drive here--being with people who understand and know what to say.

Cheryl

What a great story Cheryl. I can feel your pleasure. How nice to meet another forum member.
I have yet to do that.

Glad it went so well.

Pen

Oh that sounds like so much fun! Did you eat in downtown Chicago or out in the 'burbs? So many good places to eat in the 'burbs too.

I'm glad you got to see some friendly faces after your long trek.

Schaumburg. I wish you could have been with us, Char. I was thinking of you.

I hope your back improves because it really is a bummer to hurt that much.

Cheryl

I'm glad you were able to get together, Cheryl. I'm sure it was as good for Anna and Crystal as it was for you and Jennifer. Glad you had a good visit.

Hoping for a good doctor appointment. Take care.

A great appointment with Anna's neuro. He listens to the patient and the mom

He said Anna's spine is very inflamed. It goes down to her legs and feet. He listened to her account of feeling like her skin is going to burst--how it burns because it is being stretched so much. How she can't open her eyes very far, can't close her hands, can't fit in her shoes. Burning in her spine, legs, and feet. Joint pain. Since going off Cymbalta, worse pain from her neck on down but improved head pain.

He said she has an inflammatory disease--maybe Lupus. He did several blood tests, and he'll call when the results are back (in two weeks).

So we will wait and wonder what he will be find out. Hoping he can pinpoint what is wrong and treat it.

Very much worth traveling eight hours to see him. A hard trip, but overall it went well. Meeting Jennifer and Crystal was the best!

Cheryl

Cheryl,

I'll be seeing him on the 29th. I found out he also treats back pain and am transferring my records up to him. I was thrilled they were able to get me in so soon.

It just makes better sense from a pain management standpoint to have him treating my head and back.

Absolutely. I hope he can help get you better!

Cheryl

Cheryl,

Glad that you got to fit that bit of happiness into your trip. Anyone getting to meet Cheryl..........is blessed.

I agree! Cheryl and Anna and her hubby John were all a treasure to meet. Crystal was REALLY glad that she went with. I could tell that the end of the evening Anna was really starting to hurt. Overall WHAT fun!!

Dr W is on a rampage with the links to Lupus. Crystal was just diagnosed too. I am really curious to see what comes of Anna's testing. We are saying our prayers and keeping our fingers and toes crossed for you guys.

It was really a shame that you were not able to make it Char. It would have been wonderful to meet you too. We will be back in there on Tuesday for a follow up. He is a real life Dr House in my opinion...but with a much better bedside manor.

We would love to get the chance to get to meet more locals (or even not-so-locals) from Rhonda's. It was a wonderful experience. I recommend it to ANYONE. As Crystal would say...peace out home skillets. I need to run! Take care everone and I hope that tomorrow is wonderful and PAIN FREE!!

If you call Bobby at the office she might have some of Anna's bloodwork back. Dr W felt bad for Anna when he saw her. We saw him today. All good news on our end. Now we need to work on Anna.

How sweet of him to say that...it makes me cry.

But I'll cry happy tears for your good update

Anna keeps saying she needs to call Crystal, but it is hard to get her to reach out to people. She lives in isolation.

Cheryl

I'm so happy that you both got to meet each other and spend some quality time together!
Meeting friends you have met on such personal forums is a true gift.

May I ask, Cheryl, where this Dr. is? My in-laws live in Schaumburg, funny enough....

xo T

Yes, a blessing! Yes to Schaumburg.

Cheryl

You might be able to get the results if you call today!!

Dr. W said he would do a phone consult when he gets all the results back. Maybe that call will be anytime now.

Thanks, Angel Mom!

Give Crystal a hug from us

Cheryl

I most certainly will. Dr W was tickled at our appoitment about how well she is doing. He kept doing this little dance. It was so cute. I love a doctor that truly cares! Hugs right back at you guys. I am keeping my fingers crossed!

Do you realize how your current posts make me smile??? How cool--the happy dance by Dr. W!

Just awesome!!!

Anna continues to be better, without the evil Cymbalta she was taking for two years!

Some days are better than others, but she definitely was worse on Cymbalta. So I'm happy for modest improvement, without Cymbalta!

I HAVE to call you this weekend. Rotary Picnic tonight for John and I...but I'll call you soon, I promise.

Cheryl

Sounds good. I hope you get a call today or tomorrow. I have found that calling Bobby at the front desk can help push some things along faster. She is such a sweetie. She was showing us pictures of her chubby baby. Fat babies are the BEST!!!

Okay, Cheryl...it is Monday. Please call if you have not heard from them yet. Nine times out of ten you will hear back within an hour if you call. I am pretty sure all of the results are back.

Bobbi is the best! She always takes a minute to ask me about my handicapped son even though she has never met him. She told me she talked to him on the phone when she called about my a ppt. She said he was "delightful".

It really makes my day that she cares.

I see Dr. W tomorrow and am hoping he can figure out what is wrong with my back and get me on a positive track with it.

Hopefully he can help both you and Anna tomorrow. I'll be calling then. We are anxious to hear the results, but it is tempered with some fear of the unknown. Knots in my stomach over it. Anna's spine is on fire today. Don't know what is wrong or what can be done.

Cheryl

Fear of the unknown is a funny thing. If he does find something, a new direction of treatment might actually be easier on her and could really help with the pain. it was very scary to hear in that initial appointment about the Lupus, Vasculitis, and Connective Tissue Disease in addition to the IH, but a little steroids and chemo combo and the difference is AMAZING!!! Crystal is back to being a kid again.

I think Dr W was the perfect thing to do for Anna again. There is a good chance you might be able to get him in the office now. The waiting is really rough. I think sometimes the waiting and the diagnosis is the toughest part. THen it is research research research..then you come to terms with it.

Even though Crystal's things CAN be life threatening. At least we are on the right path now. Finding out as early as possible is the best thing so that you can attack it head on! Good luck and big hugs to you guys!!