Saw Dr. Castells For Mast Cell Disorder

[tinkerbella]

I went to see the famous Mast Cell Dr. today. I had a 10 am appointment and they said it would run very late. So I had to book the return ride for 4pm to make sure there wasn't blood work or anything else.

I have been soooooooo tired and enen though I only live 45 mins away from the doctor, it was a whole day trip. I have to take two different Metro T Cabs and buses that come right to my door to get me and take me to a drop off point in Wellesley, Ma to get into the city. When I left it was freezing cold with grey skies and by night time there were snow squals that were so blinding I wondered if I would ever get home.

I arrived just on time expecting to wait for hour hours and due to the pending snow there must have been cancellations and I was in 15 mins. The fellow worked with me first, this was new. She didn't have one ever before when I had gone to her. All of my tests hadn't come back yet, but the most important one had and it was negative but she wasn't sure if all my meds could have interfered with the results. I do have a rash on my back and my itching has been ongoing for years that I have to take allegra 24/7 and when I still can''t stop itching I take bennadrly for it also. The fellow looked at my rash and I wished Dr Castells had. I have found in the past that fellows don't always remember everything you need to tell the doctor.

Also the blood test came back showing me not allergic to things I can't touch. So, she thinks that I may have some kind of mast cell thing going on in my skin but does not think she need to do a bone marrow test for it. Although, I have had one many years ago. She prescribed a eppi pen and a specially made compound cream for the mast cells to settle down. I have to get it at this one place that only makes it. I also have to go back in three months. Also very important to moisturize my skin even my face. This I said I don't as when I do I get Rocseca. She said I had to, so I will try to very gently.

I also have a plan of what to do when the doctors what to do a cat scan or a mri with dye now. I can be premedicated to use the dyes and get a better picture. This is rather a long procedure and not just taking bennadryl. She said most hospitals use this now. Well, not mine. That will be nice as I've always felt like they were never getting a clear picture of my head when the would look inside without the dye.

I'm so exhausted and want to sleep all the time. When I finally got home I couldn't wait to crawl into bed because at five am I had to get up and get ready to go to the hospital for the day and get hydrated. I was glad to be going as my lungs were hurting so bad and only the fellow listened to them I knew more was going on. When I got to the hospital they listened to my lungs and said I needed another chest x-ray.

The x-rays came back looking the same, the nurse called and bargained with my doctor to let me stay in bed all day there, eat, and finish my fluids and then be taken down. Then i sat for over 2 1/2 hours in agony, got some student doctor that I did not want to explain why I need sodium chloride 2 times a week for my pots and a ton of other questions that I finally went what are you asking me???? I feel so sick!!!!! I wanted to say go google it, I want to rip my eyes out right now from the sinus infection and migrane pressure, Chest pain and joint pain and then having to go throught the whole heart attack work up when MY blood work is masked by antibacterials and the florinef.

Please I beg you to get the documentary on youtube to educate these Professional who just don't get it.

So now my sinus infection is back, and my peunomia is now plursey. Luckily I see my plummy on Monday. I'm wondering if this is really lupus as I had dry plursey on and off for years now they can see it. Joints are really bad and I'm not leaving this bed all weekend!

BellaMia~

[juliegee]

Hi Bella-

Sorry you're so wiped out from your adventure- also sorry you're feeling so badly. Your visit with Dr. Castells reminds me of mine, but I DID have to wait hours- so glad you didn't!

Like you, I love the having the pre-med routine before procedures & surgery AND instructions for the ER- should that become necessary.

I have a thought. Could your pleurisy really be mast cells acting up? I have never had the luxury of having a doctor listen to mine when it's tight/painful to breathe. BUT, atrovent via a nebulizer and a daily singulair prevent this for me. I see my allergist in Feb., I will ask him if I can swing by w/o an appt. when my chest hurts so that he can listen. I suspect that "pleurisy" is really your MCAD.

I've used that compounded cream- helps alot.

Apparently Dr. Castells has an MCAD video, like our POTS one. I want to get my hands on that. Did she mention it?

Feel better, sweet Bella.

Julie

[tinkerbella]

Julie,

I really wish she looked at my back as the rash is one I can't see, but feels like small bumps or pimples. It goes all over my back . Do you get pleurisy also?

She has me on neb treatments, but my cardio is concerned about my HR is too high already. Now did you have to get the compound cream out here? Was it something insurance covered? I'm suppose to put the cream on twice a day I'll have to have a nurse come twice a day. lol!!! I can't reach my back....

Oh, I need to find my soul mate. One who likes to laugh 24/7, slow dance so I won't fall, and have fun, as it's pretty funny around here. I need one at all my appointments as it's hard when you go alone, so much too remember. I'll either the doctor about the pleurisy or I'll start a list for my next vist.

We should post that list for others allergic to dye. I didn't have the energy this am. There was a procedure for an ER and for regular Cat scans and MRIs.

So thanks Julie for all your help. It looked like she had done a lot of the blood tests on me years ago as she was comparing #'s. It would be nice to get to the bottom of all this embarresing itching I do especially in restraunts, weddings or at other people's house's.

Thanks for your kindness an ongoing support.

Bellamia~

Gee I was there so long I wonder if they let you watch the MCAD video on the computer? She didn't mention it but I'll find out when I go back in April