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Other Platelet Disorders

TOPIC: New Diagnosis

New Diagnosis 6 years 8 months ago #33062

  • Vdeutsch85
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Sandi,

How is your daughter doing? I hope she is doing well. If she has any questions or concerns about recovery or medication, I can ask my sister....she's an expert! :)

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New Diagnosis 6 years 8 months ago #33074

  • DanC33
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I've had the hypertension since I was a kid. (20)

At least if my Rheumatologist doesn't know he at least will say that, unlike one of my prior Doctors who was making up stuff as he went.

I am most certainly going to try this relaxing thing!! :woohoo:

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New Diagnosis 6 years 8 months ago #33086

  • 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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Valerie:

She's okay, but having odd problems that are worrying me. It's been a week and her voice is still pretty bad. She can't yell or speak loudly. Maybe that will just take more time. They took the thyroid through her arm pit, and she has total numbness on the inside of her arm. At times, she has stabbing pain from the nerves there. She's still sleeping a lot. She can't lift anything with that arm either.

All of those things might just take more time, but are concerning at the moment. She's worried because she has to go back to work in a week and isn't ready. A week can make a big difference though.

Dan:

Being at home can make a big difference. Are you still on CellCept? Last April (2012) I had surgery on my cervical spine. I was off of work for 5 weeks. I was delighted to have to have surgery in exchange for some time off. I didn't know I'd be quitting at that point. There were times I wanted to rob a convenience store and be in jail so I didn't have to go to work. The physical toll was too much. Anyway, if you have the ability to stay home, do it and try to enjoy!
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New Diagnosis 6 years 8 months ago #33100

  • DanC33
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Thanks Sandi, and yes I'm still using the Cellcept but the side affects are starting to lesson.
And I will be home for awhile, my Doc has decided to pull me out for a couple of months until I can get into a Neurologist. Fortunately I have disability through my work. Now if only I could be in the sun, I would be living at the lake with a fishing pole.

I do hope your daughter gets better. Stuff like that is rough.

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New Diagnosis 6 years 8 months ago #33102

  • 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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Well, semi-cloudy days and evenings are good for fishing too! Just use sunscreen. I always push it in the sun, sometimes can't help it. I know it's wrong and end up feeling guilty about it. One of the worst things about having Lupus; I miss not having to think about it.

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New Diagnosis 6 years 8 months ago #33109

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Where I am it's sunny 95% of the time, but yeah I still spend a little too much time outdoors with the rashes and other stuff that goes with it. So I invested in some long sleeves, a couple of hats and sunscreen. My Rheumatologist cringes when I say stuff like that.

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New Diagnosis 6 years 8 months ago #33111

  • eklein
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Why is your rheum cringing, that's what we are supposed to do? I have to wear gloves too. And a scarf.
I feel like I look crazy but nobody has every said anything.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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New Diagnosis 6 years 8 months ago #33113

  • 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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I have never had a rash, so I'm just not that careful. I'm sure I'll jinx myself now. I know that regardless of not having a rash, it's not good to be in the sun. Now I've got thin skin and most of my meds cause sensitivity to the sun, so I have to be more careful. I do use sunscreen, but only 15 SPF. I used to use baby oil back in the day and fry myself....pre-lupus.

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New Diagnosis 6 years 8 months ago #33160

  • DanC33
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Like most guys that have always been able to do just about anything, I tend to over do things.(if a little is good a lot is better right?) So because he knows this, thanks to my wife, he worries I'll over do something. And yes wearing hats, gloves and long sleeves when it's 80+ degrees might make us look odd but it's much better than being a shut in.

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New Diagnosis 6 years 8 months ago #33166

  • 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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I'm in the middle of trying to refinish my back deck. I can't wear sunscreen because the saw dust from sanding will stick to me. I can only do a little at a time so it's taking forever. I tend to overdo constantly, trying to fix 8 years of house neglect both inside and out. Since I've quit my job, I go through every single day still trying to meet goals and race through things as much as possible. Type A, can't let things go even if I'm killing myself to get it done. I sweat wearing a tank top; can't imagine sleeves.

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New Diagnosis 6 years 8 months ago #33167

  • DanC33
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I would be in one giant rash, but I too need to do mine as well.

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New Diagnosis 6 years 7 months ago #33238

  • 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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Dan - did you get an appt. with the Neurologist yet?

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New Diagnosis 6 years 7 months ago #33284

  • DanC33
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No still waiting. I'm doing a search a little farther out of my area but that still hasn't gotten me anything and I do have a friend with MS that is trying her Doc but nothing yet.

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New Diagnosis 6 years 7 months ago #33285

  • 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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Well that's frustrating! I hope you find one soon.

I have a weird thing going on. I spent a few hours yesterday staining the deck. I took breaks and didn't think I did too much. When I came in the last time and tried to wash my hands, I had no hand strength to do it. I woke up this morning to the same thing. I can't open tooth paste, I can't button, I can't rip a piece of paper. I've had this happen before but it only lasted an hour or so. I figure I must have pulled my arm muscles or something. I'm useless. I also have pins and needles in my arms from being in the sun. That is one thing that the sun does do to me every single time. That usually goes away within a day or so when I stop exposure.

I was going to go back out today, but have so much overall body weakness that I'm not sure I can. I never know if it's good to keep doing things to strengthen the muscles or if it just does more damage. You never know if you are doing too much until you already did, and sometimes it's hardly anything at all.

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New Diagnosis 6 years 7 months ago #33290

  • DanC33
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Take a break, listen to your body and don't over do it. My hands will do something similar when I do too much repetitive stuff and the only thing that helps me is rest.

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New Diagnosis 6 years 7 months ago #33291

  • 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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It's never going to get done. :S

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New Diagnosis 6 years 7 months ago #33293

  • jeffrey71
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Sandi wrote: Well that's frustrating! I hope you find one soon.

I have a weird thing going on. I spent a few hours yesterday staining the deck. I took breaks and didn't think I did too much. When I came in the last time and tried to wash my hands, I had no hand strength to do it. I woke up this morning to the same thing. I can't open tooth paste, I can't button, I can't rip a piece of paper. I've had this happen before but it only lasted an hour or so. I figure I must have pulled my arm muscles or something. I'm useless. I also have pins and needles in my arms from being in the sun. That is one thing that the sun does do to me every single time. That usually goes away within a day or so when I stop exposure.

I was going to go back out today, but have so much overall body weakness that I'm not sure I can. I never know if it's good to keep doing things to strengthen the muscles or if it just does more damage. You never know if you are doing too much until you already did, and sometimes it's hardly anything at all.


Sandi,

Sorry to hear about your hands and such. A few years back I was working out and one day I went to do a shoulder exercise and my shoulder just would not move. It was like it was paralyzed. Thus began my experience with NSAIDS (which I believe caused my ITP). I had some tingling in my back and shoulders along with it. After about 6 weeks everything was fine. It was not a gradual healing that I could monitor. It seemed like nothing happened for about 4 weeks then over 2 weeks all healed and was good! My doc told me that he thought that the shoulder nerve had became inflamed. I have never had that problem again. Although I do have some tingling issues in my back with certain exercises, normally it occurs during stretching of the back and shoulders.

My humble "training" opinion is there is nerve inflammation somewhere between the back and finger tips on that side. I would just try to back off the usage a bit and see what happens. If no change by mid week of next week I would head to the doc.

Now, again in my humble opinion, when you get this cleared up, start taking yoga! I has made a huge difference for me and in my physical abilities. Zen has been around for 10,000 or more years, most drug companies less than 50!

Jeffrey

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New Diagnosis 6 years 7 months ago #33295

  • 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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Jeffrey:

Yes, it is nerve inflammation along with muscle inflammation. It's not injury related though, it's autoimmune. This is the reason I can't exercise or do much of anything. Any time I try, I'm pounded with symptoms and inflammation that can last days or weeks. It's debilitating and the problem just gets worse. I was hoping to start walking at least, but now with the stress fracture I can't even do that. I have wanted to start yoga and did get through 10 minutes of a beginners video a few weeks ago. Whoop! Then I had to quit because it's impossible to do when you can't bend your foot.

I have a long history with NSAID's too. I'd been taking 1,000 mg's of Naproxen a day for the last 8 years, plus 2 Advil PM at night. My doctor recently asked me to try to stop those because of the risk of gastrointestinal bleeding. Add those to Prednisone, Imuran and the other meds I take, I guess it could be trouble. Any time I'm in the cold or the heat, the pins and needles start like I'm being pelted by sleet.

I can't figure out why my left hand is weak too when I didn't really use that one. I'm right-handed.

So, did you really want my whoooole history? Sorry.

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New Diagnosis 6 years 7 months ago #33297

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Sandi!

The whole story is great with me! One thing at a time I guess. :) :) The most important thing in all this you are doing, trying!

Jeffrey

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New Diagnosis 6 years 7 months ago #33314

  • 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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Yep - trying to rip toilet paper off the roll the past few days has been a challenge, but I don't give up! :laugh:

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New Diagnosis 6 years 7 months ago #33318

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Sandi wrote: Yep - trying to rip toilet paper off the roll the past few days has been a challenge, but I don't give up! :laugh:


Sandi,

Speaking on behalf of all of those east of the Mississippi, please keep trying! Just sayin....

Jeffrey

And may we also wish you the very best of luck with that! :)

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New Diagnosis 6 years 7 months ago #33326

  • 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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You got it!
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New Diagnosis 6 years 7 months ago #33338

  • 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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Now I know why my left hand isn't working. I have shingles, and it affected the nerve in that hand which caused muscle weakness. I just hope it comes back!

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New Diagnosis 6 years 7 months ago #33339

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Is shingles more common for people on prednisone or other immune suppressing drugs?
Would it be a good idea to get the shingles vaccine?

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New Diagnosis 6 years 7 months ago #33345

  • Melinda
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Sandi was there not a "rash" or something on that hand that you would have known you had it? [I'm too lazy to go back in this tread to see] If you have muscle weakness would PT help with that hand?

Rob my hematologist and MD have said no to the shingles vaccine [one reason ITP, another reason is I have had it twice - once before ITP & once after ITP - and the vaccine has not been studied on those who have had shingles].

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New Diagnosis 6 years 7 months ago #33350

  • 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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Yes, I'm sure the fact that I'm on Imuran and Prednisone raised the risk.

A vaccine would be a good idea for most people, but vaccines scare me so I try to avoid them. Sometimes they cause more problems than the illness might.

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New Diagnosis 6 years 7 months ago #33351

  • Sandi
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Melinda - I found the rash on my arm two days after the weakness started. It's in a weird spot a few inches down from my arm pit. It had been burning and tingling but I'm so used to that sort of weird thing I didn't think much of it. It's too soon to think about PT; this will hopefully resolve when the shingles are over or shortly thereafter.

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New Diagnosis 6 years 7 months ago #33355

  • Melinda
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What is being done for your shingles? I hope it wasn't too long a time before discovered - shingles scares the h-ll out of me! The 2nd time I had it was worse than the 1st time - won't go into the stories of friends & relatives who have had it, but like I said, this varicella zoster virus scares me!

This vaccine one should talk with their hematologist about before getting - it is a live vaccine. That's why I was told I could not have it, that and the fact I've already had shingles 2x.

Have you ever read "The Great Influenza: The Story of the Deadliest Pandemic in History" by John M. Barry?

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New Diagnosis 6 years 7 months ago #33360

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Anyone on immunosuppressive drugs should be very careful with live vaccines as they can make you very sick. In fact it says right on my bottle of Cellcept to avoid vaccines of any kind.

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New Diagnosis 6 years 7 months ago #33366

  • Sandi
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Melinda - as soon as I found the rash, I went to the ER. It was 11:00 on Friday night and although I know it was not a medical emergency, the fact that it was affecting the nerves so much scared me enough to not want to let it go any longer. I've read that nerves can be affected and muscle weakness can precede the rash, and that is exactly what happened. Treating it quickly can minimize damage. I hope the nerve damage is not permanent. They gave me Valtrex. The blisters have not gotten any worse, so I take that as a good sign. I have no improvement of the muscles yet though....that might take some time.

Dan - I avoid vaccines all the time. I did get a tetanus a year or two ago because I had a rusty nail go through my arm. I thought that vaccine was necessary at the time though.

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