Good visit with Dr. W

Dr. W listened to me and said it could very well be ankylosing spondylitis AS (also linked to migraine) and he ordered a blood test for it as well as other of the rheumatoid arthritis'.

He actually went through my MRI screen by screen with me explaining it all. And the MRI was normal! He said one of the things that leads him to look at the AS diagnosis is I have "rough" spots at the SI joint, particularly on the right side where I have so much trouble.

He took about six vials of blood for diagnostic purposes. Our favorite nurse B took the blood and told me that Dr W loves his Rondas patients because we are such a challenge to him and he loves solving the mystery. She said she loves their Ronda parents because we're so easy to get a long with.

I told hubby that for the last 30 years I've been brushed off when x-rays and MRIs came back normal. I've never had any Dr investigate further and I've been to neurosurgeons to orthopods, but never a rheumotologist. I can't tell you how reassuring it felt to know he's determined to find out the problem. He even asked me if my pain control is adequate! (it is, but how refreshing to be asked instead of quivering in my boots afraid to bring it up!).

He also agreed that there is a strong probability that my mother had Ehlers Danlos syndrome based on what I told him, so imagine he'll be looking at that also, since that is hereditary.

Thank you for that insight. I really needed it today.

Cheryl

I'm sorry you're struggling. It did me good to know that I found a Dr who is intrigued by my rather complicated history rather than tuning it out. I'm glad it helped you to know that.

I know there's an answer out there that will tie together my back, my migraines and other issues. I also know how hard those answers can be. But when my son was diagnosed with 8P- there were only 15 documented cases worldwide! I just didn't give up, I drug him from dr to dr. (in facted my mil asked me why "I wanted something to be wrong with that baby". Yes, things were quite chilly between us for a long time. But she was gracious enough to apologize when we got the diagnosis).

But, in my sons case each Dr. was saying, "yes, there is something wrong, but I don't know what it is". I've never had a Dr. look at me and acknowledge that there was anything wrong. Finally, I found one who acknowledges my pain and is searching for answers for it.

That is awesome to hear; finally a doctor who listens. I see my PCP tomorrow and I'm going to suggest seeing a rheumotologist. I just went to a new neurologist and he really did not have anything new for me so he and started me on triptans again (which don't work and tear me up with side effects).

Good luck Charlotte!

The rheumotologist that I saw, many years ago, told me that the pains that I felt were ALL imaginary, and I did not have enough trigger points to have fibromyalgia. For all that the pains were imaginary, they sure hurt like the dickens.

Have an appointment with the good doctor in early August

Cheryl

I'm glad he was able to see Anna so soon. Here's sending you good things!!!

By the way (in your initial post), did you mean to say parents or patient when mentioning how B finds us easy to get along with.

Being I'm a parent, I was hoping it was "parent." But probably you meant patient both times???

Just wondering

Cheryl

Yes, I meant patients, BUT she had just spoken about you in particular when she made the comment.

Well, how nice is that?

It just made my day

Cheryl

P.S. I think some office treats are in order!

Cheryl

I was thinking that last night! great minds! I sent a girlfriend of mine one of those edible fruit bouquets and she said it was delicious, so I was thinking about one of those.

Dear Charlotte,
I have been seeing Dr. W for several years. He was originally a doctor who researched how medicines react in our brains. That is one reason he is so good at figuring out which med to try on us and if it doesn't work, he can usually tell why it doesn't and which med is best to try next. He told me he decided to become a practicing neurologist because he was so distraught at hearing from patient after patient how mistreated they were by their doctors.

And...how many drs did not even believe the patients were in pain. He is a fabulous doctor, and he is just as fabulous a person, and after 38 years, and dozens of drs and therapists of every type, I feel so lucky to have found him. I remember when I first told him about Rhonda's and all the people I met on the site. He immediately wrote it down and referred other patients here. That is the kind of dr/person he is.

And it was my angel, Cheryl, who sent me to him. One of her gazillion pen pals had mentioned she had a wonderful dr in the area, and Cheryl urged me to contact her, which of course I did, because you never ignore a special message from one of God's righthand assistants.

I always tell him my greatest fear is that now that I have found him, he will get hit by a bus. I tell him to be very careful and take good care of himself, and watch out for any wayward buses.

Mishkyn

I really needed a smile today, Mishkyn.

Yes, going to see him tomorrow. Anna started losing her vision on Tuesday, along with getting a new "sledge hammer HA" behind her eyes. She can see ok things that are close to her, but beyond that she sees blurred colored objects. It has been ok for her here at home where she knows her way around, but doing this trip may be trying. I don't even want to think about it

I know what we are up against with bewildering neurology stuff. Scares me.

So nice to see you posting, and I always love to hear from you.

Cheryl

Mishkyn

That explains why he is so understanding about my horrible reactions to some preventatives I've tried. He's made comments like "we won't even try that class" of drug. But, he has also made me trust him, so I am willing to try some preventatives, which I wasn't willing to do six months ago.

Yes, Cheryl is an angel. She steered me to Dr. W too.

Cheryl, please post as soon as you can after the appt. Tomorrow. I'm sending so much love yournway.