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What to do?

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13 years 9 months ago #5140 by sandy
What to do? was created by sandy
I was diagnosed almost four years ago with ITP but I don't know much about it.When I aked questions they just tell me to watch for bruising and bleeding gums.I suffer from severe fatigue and pain through out my body. I have seen three diffrent doctors and they have all told me that these symtoms don't have anything to do with ITP. The fatigue is lasting for longer periods of time,the pain comes and goes (days at a time).
I only go see the dr. every six months, the last time I saw her she said if my platelets fell below forty she would start me on an IV treatment. I went friday 5-28-10 count was thirty. I'm confused. Now she says I need my spleen out I go back on June 16th, I'm 41 years old. I've done well so far. except for fatigue and pain. I am starting to think it's all in my head. Wht to do, Do I change doctors? :(

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13 years 9 months ago #5141 by CindyL
Replied by CindyL on topic Re:What to do?
Hi, Sandy. Most of us don't treat unless we're below 20; that's my cut off count. I think you need a second opinion. Since your count was under 40 and your doctor said he/she would treat, did you get your IVIG? There are a lot of other treatment choices besides splenectomy! Do you have any symptoms; ie bruising/bleeding? Have you tried anything else? Splenectomy is not a cure, just another treatment option and it doesn't always work. Mine didn't. Goo luck. Try to get a second opinion. Keep us posted.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 9 months ago #5153 by Sandi
Replied by Sandi on topic Re:What to do?
Have you been tested for any other autoimmune disorders? ITP can sometimes go hand in hand with other inflammatory illnesses.

I wouldn't get my spleen out before trying any treatments.

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13 years 9 months ago #5159 by NatalieM
Replied by NatalieM on topic Re:What to do?
I agree with the previous posts. Second opinions are always good. Also, there are many other options that are not as permanent as splenectomy. Look into some other options!

Natalie

*Here's to high platelets!*

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13 years 9 months ago #5162 by hairball01
Replied by hairball01 on topic Re:What to do?
Sandy, I may not get the terminology right, but ITP can be listed as 'primary' in that low platelets are the result of an Auto Immnue origin. Or low platelets can be 'secondary' from some other medical problem within the patient. Sandi refers to this in her post. In your post, you mention the Doc's don't concur on the diagnosis..... they might want to treat the symptoms of primary ITP when they should be looking for other problems. There are ways to confirm primary ITP and a good Hemo Doc should check it out before going further.

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13 years 9 months ago #5166 by sandy
Replied by sandy on topic Re:What to do?
Thanks for the info.

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13 years 9 months ago #5167 by sandy
Replied by sandy on topic Re:What to do?
Thanks to everyone for all your responses I think my best bet is to find a new doctor. I do have bruising and bleeding. I dropped a glass and it broke and cut myfoot open bad enough for stitchens. I was in the emergency room for 6 hours with a pressure bandage on and they finally sewed my foot up while it was still bleeding. I was tere for a couple more hours. The doc. told me to see my Hemotologist the next day. Like I said early I do well except for fatigue and pain. I just want to know more about this illness. And I DON'T want to have my spleen taken out. It feels good to talk to others who may know what I am feeling. My family just doesn't understand.

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  • server
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13 years 9 months ago #5174 by server
Replied by server on topic Re:What to do?
Sandy, I'm thinking the 2nd opinion would be best! A fresh perspective. You say you've been diagnosed for 4 years? What other treatments have you tried, if any.
What part doesn't your family understand? How could they not understand?! I'm sorry you have to deal with that on top of ITP. In the end though, it's gonna be alright! Please feel free to share anything you want here, we all understand.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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13 years 9 months ago #5196 by sandy
Replied by sandy on topic Re:What to do?
I've never had any treatments.In the beginning I had blood work drawn 1x a week for 2 months. I was tested for lupus and other things. Then referred to a hemotologist. I went to for blood work 1x a month for 3 months and then every 3 months for 2 years. Then every 6 months until now. My doctor has always acted like ITP is no big deal. But I appreciate just having someone to talk to. Even though I've had this for awhile, I just found this web site friday and I'm glad I did. I have learned alot.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 9 months ago #5198 by Sandi
Replied by Sandi on topic Re:What to do?
Sandy - just wanted to mention that Lupus does not always show up at first. If there are symptoms, it's something that should be tested more than once.

I developed Lupus 8 years after my ITP diagnosis. My blood work was fine at first too. I'm not saying you have it, just something that should probably be ruled out again at this point.

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13 years 9 months ago #5230 by sandy
Replied by sandy on topic Re:What to do?
Thanks for the support.! And advise.

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13 years 9 months ago #5255 by Sorenna1
Replied by Sorenna1 on topic Re:What to do?
I have read conflicting studies. Some say that yes, ITP can cause fatigue.

I also have fatige and pain that waxes and wanes.

I ahve also read that a large percentage of those with ITP will go on to develop an autoimmune disorder within ten years of IPT dx.

Some see it as a possible harbinger, others as the autoimmune disease in itself.

It really takes a lot or personal decision making with a dr that will let you make your own decisions.

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