does any one know of a good doctor in california?

Hello my name is Toni I'm 28 years old and single mom of a three year old. I was diagnosed with ITP September 1st 2014. One morning I had woken up covered in blood, went to my local hospital they didn't know what was going on they checked my platelet level count and said my platelet count was at a zero, they transferred Me 2 hours away to the nearest Cancer Center unit. What they can give me platelet transfusion and blood transfusions as well I believe all together within a week I had six blood transfusion and about eight platelet transfusions along with medication. They didn't know what caused it I just woke up with it one morning the symptoms are Beyond explainable no doctor can tell me what I'm going through your body physically emotionally is drained the medicine that they put you on slows down mentally physically and emotionally. Till this day I find myself spacing off into la-la land I literally feel like I'm handy capt at times. I ketch myself slurring my words and getting side tracked very easily, I can not concentrate nor keep eye contact with who'm I'm talking to. Pluse there is a lot more . I'm asking is there any doctor that could help me understand why I am the way I am today?
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Hi Toni, I am glad you found us.

Most people don't learn so suddenly that they have ITP. That must have been a terrifying experience!

If you look at the top of the page at the pink tab that says "Resources", and click on "Find a doctor" you will find some suggestions.

Also, look at the pink tab that says "About Us" and click on "Our Medical Advisors". You will find several MDs connected with large California universities, any one of whom should be knowledgeable.

What part of California are you in? That would make it easier for others to give recommendations.

There is a lot of support and knowledge to be found at this website, so feel free to share your questions here.

I hope you don't mind some questions. If you can tell us more we might be able to help you better.
The incident happened September of 2014. What has happened since then?

• How are your platelet counts now?
• How have you been treated?
• Do you think the symptoms you describe could be from medications that you are taking?
• or, are you worried that there may be some kind of damage (neurological?) from the original incident?

as of today I'm not sure where my count is. but as of Tuesday of this week it was at 338.
yes I have been treated for the past two years on prednisone and it has token its effects on my body. I have crappy vision I have to wear glasses and my body ache's all the time and don't even get me started on join pain.
yes I do think my body has damage from the medication, and yes neurological as well. sad to say but I can not function in public. I start to have panic attacks because every one around me is on a faster pace then I am and it freaks me out because I feel like I'm a inconvenient to society being out and about. so I rush when I do shop etc.. and mood swings that I have never had before not even like this when I was pregnant. I live in central California in Merced county. I have told my doc number of times of what I was dealing with day to day basis and he did not seem to care so I have not been back since November of last year. I'm currently talking to my primary care doctor to give me a referral to a different doctor in the area but I have looked online myself to see if there was anyone else in the county but I have not found anyone. I don't mind traveling, I just want the help I deserve and a doc who will take care of me as a human being and not a paycheck. I have also looked on this page for docs around my location and nothing. but that's ok I feel confident in this page that I will find what I am searching for. knowing this page and awareness is making news is a big relief to me.

Two years is a long time to be on a high dose of prednisone, and if your counts are in the 300s, it sounds like you are being overtreated. The goal is not to make your counts normal, but to make your counts safe with as little treatment as possible, because ALL treatments have side effects.

How much prednisone are you taking? It can cause many problems similar to what you describe. Don't forget that it can cause even worse problems if you quickly stop taking it.

It sounds like you are doing the right thing to find a new doctor... someone who really understands ITP and other platelet disorders. You should be able to find someone at Stanford (University) Healthcare in Palo Alto, but that is a long drive, and I hope you find someone closer.

Hi Toni, I'm glad you found us, too.

I live in California, too--in the Inland Empire. I have a doctor in Fullerton who I presently go to--but if I want to go to a doctor in the Inland Empire, the nearest one who knows about ITP is listed in Palm Springs. This is quite a ways from where I live and he is a head of a hospital; probably does not take everyone as a patient. There are other doctors out there who know about ITP, but they are not always on our list (my present doctor wasn't).

Just keep checking or ask one of the major hospitals for a reference.

when I was first diagnose with itp they had me on 125 a day no lie. then 4 months later at my next doc app they put me on 35. that's when I had my second episode of low level and was hospitalized again. so back up to 125 I went. then I went back another 4 months later and went down to 100 and then they gave me a blood level checker thing so I can see if I was going over my sugar level to see if that was the cause of the low drop in my count. they where basically trying to say diabetes is why I was getting a low count but I never got it. I'm down to 35 a day, sorry if this grosses guys out lol but when my aunt flow comes to visit is the most worst time ever. since there is a point of bleeding out I become extra week and fatigue, I don't know if its like that for other women but its hell for me. and I have noticed since I have had itp I have red rashes all over my body and arms. I go back to my doc tomorrow cause she wanted to test me for lupus. since I'm having all the signs for it. kind of scary not going to lie, I have couple family members that's have this. no its not genetic they are married in family. I have done so much research on the family medical history tell my head started spinning. all I came up with was that my moms (mom)my grandma had passed away from a blood disease but this was so long ago I think in the 70's that they didn't ketch it on time. my mom has also told me that my grandmother had the same rash and skin problem that I have today. so I guess this in my case is genetic. smh. so we shall see what tomorrow brings. I have been looking on web md about hemo docs and ive made a list to where I'm going to be calling them after my doc app tomorrow to see if they take my type of insurances.

Toni,
There is a type of ITP that is genetic (I learned this at the ITP conference). It is different than the general ITP. I was at the ITP Conference in Colorado when they talked about this. I, too, had family members die from other type of blood disorders--but they were a lot different than mine. Some blood disorders are more prevalent in the Mediterranean areas (this I have read before). I am Italian so this would apply to my family.

Just try to stay positive and take care of yourself. You do need a good doctor. I found that this is so important. Some doctors not familiar with ITP just do not know what they are doing.

Good luck to you and please keep us posted.
Dee Dee

It's possible that Prednisone is causing some of your symptoms. As you taper, it can cause joint pain, depression, a feeling of being overwhelmed, unable to handle crowds, inability to think, etc.....I felt the same way when I tapered the dose. Hopefully you can get off of it soon. There is no reason to keep you on it that long. Your counts are great.

I agree that you need a new doctor.

well today I had went to the doc. my primary doc. she put in a referral to the new hemo so now its a waiting game for my insurance to go threw who they want to send me to but I was sorta snooping over her shoulder when she was putting in the request on the computer and it said Stanford so I hope I get accepted to go there (fingers crossed)I have low vitamin d count and me being anemic , is her only excuse of why I am so tired and not able to concentrate on daily life etc. which blows but hey hopefully my new hemo doc will be more useful then what I'm having to deal with now. oh and other news. along with taking prednisone aka (death pill) she said he had done some damage to my intestine and I had to go in and take a breathing test after drinking to horrible lemonade drink to see what acids are being stored in my intestine. so just a little update in the past week I have had one chest x ray, two c.t. scans, lord knows how many blood tests done when I was knocked out. all due to cists on my right kidney I guess its twisted in the main artery that is in the kidney? that's what I was told . so they knocked me out cuz I tell you what that pain was worse then childbirth. so ya that is my update. I just want to say again thank you all for your impute and warmth of inurashment you have with me and other itp fighters.

Toni, This is a good start--going to see a doctor at Stanford. When I had my second bout of ITP, I was able to go to USC for a second opinion--and that really helped. I do agree with Sandi about the Prednisone. It is really nasty for some of us (including me!). And, it can give you a lot of the symptoms Sandi mentioned. Just try to think positive and, hopefully, you will get a doctor who knows what he/she is doing. Your doctor probably doesn't know anything about ITP. Don't feel bad, as I went through the same thing.

Dee Dee

Toni, I was hoping you would end up at Stanford. It is a long drive, but it is also well worth it, to get a really good doctor.

I noticed that there is a support group in Patterson, CA, not too far from you, I think. but no meeting dates were posted. Also one in Sacramento, next meeting June 18.

For information about an existing group, contact Jody Shy at 1-877-528-3538.
Her email is posted here: pdsa.org/join-the-community/local-groups.html

yes I had seen that but when I went to get more info on this date it didn't have a link I will try what you have sent to me, thank you very much. and yes I was hoping to end up at Stanford as well.

my insurance is referring me to a doc in the same cancer center that my other doc is located at. if he or she is not any better at what they do and cant help me then yes I will call my insurance myself and tell them to send me to either Stanford or some where else. I honestly feel that these docs are giving me the run around again and I'm not having it. as you can tell this post is being typed at 136am and I'm wide awake lol. but thank you again rob I will look into this and I will give you an update!!