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Other Platelet Disorders

TOPIC: New Diagnosis

New Diagnosis 7 years 4 months ago #32392

  • Melinda
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Mama you have raised a great, intelligent daughter - just as you would want to do. Don't try to second guess her decision to get rid of the offending organ - stop researching and looking for trouble. You do know it is very dangerous to get up & out of bed in the morning, yet you do not worry about her doing that ;)

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New Diagnosis 7 years 4 months ago #32398

  • 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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Oh, you know how it is. You can pretty much take anything that hits you medically, but when it messes with your kids, it's too much!

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New Diagnosis 7 years 4 months ago #32439

  • DanC33
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Just had more blood work done and now I have to add Gout and very high uric acid levels into the fire. Also I had a VC scan done and I also have pleurisy. I'm not having a good day.


And I hope your daughter is OK..

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New Diagnosis 7 years 4 months ago #32442

  • Melinda
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Sandi wrote: Oh, you know how it is. You can pretty much take anything that hits you medically, but when it messes with your kids, it's too much!

Just pray you never hear the C word!

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New Diagnosis 7 years 4 months ago #32443

  • Melinda
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Dan you had a lot thrown at you in one day - hope you are doing well!

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New Diagnosis 7 years 4 months ago #32444

  • Sandi
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No, I don't ever want to hear the C word! Sometimes though, autoimmune issues are just as bad because it's a never-ending lifetime battle. I'm glad your son continues to do well!

Dan - sorry to hear all of that. Hopefully with treatment, it goes away soon. Common Lupus complications....it really stinks!

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New Diagnosis 7 years 4 months ago #32455

  • 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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Sorry, Dan. We sort of highjacked your thread.

Saw the Rheumatologist. Got Imuran, start today. Such fun!

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New Diagnosis 7 years 4 months ago #32540

  • DanC33
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It's ok highjack away!! I like reading the posts on here, it reminds me I am not alone. Quick question...how is the best way to deal with the fatigue? I am exhausted ALL the time. I do get 8 hours of sleep a night, but it seems like it's never enough.

I hope the Imuran works!

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New Diagnosis 7 years 4 months ago #32546

  • Sandi
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I'll tell you my experience over the years regarding fatigue. It's always there, no matter what, but sometimes it's so debilitating that I can barely walk across the room without getting winded and feeling like my legs won't get me there. I'll spend weeks or months feeling horrible like that only to discover that I have a vitamin or mineral deficiency. I know I've said this before, but here I go again. Make sure you get those things checked out frequently and take good supplements. Some people with autoimmune problems do not absorb vitamins from food properly. I've spent way too much of my life feeling like crap over things like that. I think deficiencies can hit us harder because we already feel bad, so adding anything to that just makes it worse.

Many times I mention to my husband that I'm tired. He'll say, "but you slept pretty good last night". I say, "it's not that kind of tired". People don't get it. I also found out that I have sleep apnea and need a C-Pap. Another thing that just made things worse. I do not fit the profile so that was a real surprise.

Another thing is the medications. Most of the time, I honestly cannot tell the difference between Lupus fatigue and med side effects. Is it brain fog or medication?

It's very hard to figure this out, especially when the doctors just blame Lupus for everything. I always did too, but since I quit my job, I've been doing some serious research and making diet changes and adding supplements. It is starting to make a difference in some ways. I feel a bit stronger. I wanted to start walking SO bad but have a stress fracture in my foot so that's out. I go Wednesday to find out if I need a boot, a cast, or surgery. This is the second time in 9 months. It's become a full time job to manage my health and salvage my body. It's a slow process and I may never get back all that I've lost, but I'm trying.

So anyway, start looking for reasons other than Lupus. Ask for blood work to test those things. If you are borderline low, get good supplements and stick to them. It would be a start. Ask for thyroid tests once in a while and any other thing you can think of that could cause fatigue. You never know what they might find.
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New Diagnosis 7 years 4 months ago #32560

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I also have sleep apnea and I use a bipap machine at night. My bronchial doc just did a sleep study and I am getting 7-8 hours of sleep (he also blames everything on the Lupus). I am also adding magnesium supplements and much stronger vitamin C,D and some of the B's. I just did another chem panel and all my electrolytes are still in the low normal range. My thyroid came back normal(T4) But I do take levothyroxine for that.

My wife and my friends don't get it either.

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New Diagnosis 7 years 4 months ago #32563

  • Sandi
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I find that anything that helps, even if it's just a little bit, can make a difference. You're on the right track. I don't have any other tricks, I play it by ear. Do you find that seasons affect how you feel? I sure do.
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New Diagnosis 7 years 4 months ago #32564

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Well it's starting to get real warm here, I also went on a trip to Oklahoma and the humidity really hit me. So we will see what happens. Thanks for the tips.

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New Diagnosis 7 years 4 months ago #32585

  • 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 do a lot better when it's warm than I do when it's cold. I hate winter!
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New Diagnosis 7 years 4 months ago #32713

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Just got back from the Rheumatologist and it was not good. He says my Lupus is attacking my brain and the heaviness of my legs the brain fog are all symptoms of that. He did a pin prick test and I did not feel it. So he now added Cellcept and Medrol to the ever expanding list. I also need an MRI done of my brain and I will be seeing a Neurologist next week. So here's hoping they don't find anything else.

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New Diagnosis 7 years 4 months ago #32717

  • Sandi
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So sorry to hear that. I've had some neurological problems and I know how scary that is. I can tell you though that many times, things do improve with treatment. I was seeing a Neurologist for a long time, had two of them at one point, but did improve and have not seen one for years. We were discussing some rounds of Cytoxan but it never did come to that.

Try to stay calm for now. I knew a woman who had the leg heaviness and it wasn't neurological. Brain fog is also very common....this could be anything. I've had myself all worked up over things before and many times it was not the worst case scenario. It's quite easy to let it get you down and depressed.

I have a foot MRI next week to check for bone necrosis from years of steroids. Not quite as serious as yours. They keep putting us back together and I keep wondering why. Then I slap myself and get on with it.

Good luck and keep talking. It helps.
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New Diagnosis 7 years 4 months ago #32732

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Yeah, sometimes a good slap is helpful...but this is all new to me. I have always been the "tough guy" so dealing with everything has been weird. But coming on here does help a BUNCH! And yes I am trying not to get too into myself and realize that there are people with much worse problems than mine.

Any MRI can be serious or good depending on the outcome. So I hope yours goes well!

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New Diagnosis 7 years 4 months ago #32734

  • 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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Ha, I hope it goes well too! My husband has it in his head that if it is necrosis, the only fix is amputation. I told him that isn't true, way too drastic!

Just take one day at a time for now. :unsure:

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New Diagnosis 7 years 4 months ago #32742

  • DanC33
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Speaking of good slaps...sometimes our other halves need them too. :

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New Diagnosis 7 years 4 months ago #32745

  • Sandi
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Oh I'm always happy to oblige for that! :evil:

My husband is weird. I thought he could benefit from Magnesium too, so I gave him one. Five days later he got some intestinal upset and blamed me and the Magnesium. Are you kidding me? He constantly has intestinal issues so I don't know why he thinks I'm to blame. :whistle:

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New Diagnosis 7 years 4 months ago #32781

  • DanC33
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Convenience, why else? My wife blames me for all kinds of stuff. You know, the weather or having a bad hair day.

The side affects of the Cellcept are terrible! I have not slept in 2 days and speaking gastrointestinal problems, they have hit me real hard. Any ideas?

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New Diagnosis 7 years 4 months ago #32786

  • 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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Imodium. I used that for the intestinal explosions and it did help. I didn't have problems sleeping with CellCept, so I don't know what to tell you there. Meditation on the iPod? I use that sometimes and it can help. Ocean sounds or thunderstorms. I have insomnia for no good reason.

It's tough because with every med you take, you have to take more to combat side effects.

What is your CellCept dose? I learned my lesson and start a drug on a low dose. If that works out, I go up slowly. My doctors are not always crazy about that option because it's not a "beneficial dose", but it's better than taking it for a few days, getting hit with side effects and stopping it altogether. They become agreeable when I explain that.
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New Diagnosis 7 years 4 months ago #32788

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I'm taking 500mg twice daily of the Cellcept and I'm thinking it's the Medrol causing the insomnia. I am going to get the Imodium today. Doc said to try Melatonin if I had any problems sleeping...so here goes.

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New Diagnosis 7 years 4 months ago #32792

  • 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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Oh, Medrol would probably cause the sleeping problems. Duh. I missed that one. That is a high dose of CellCept. I was on 250 mg's a day and it was too much for me. It affected my ability to think and I was still working then. I wasn't able to function so I stopped it.

Good luck with your counter-action drugs!
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New Diagnosis 7 years 3 months ago #32896

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Had the brain MRI yesterday and I will get the results of that tomorrow so here's hoping. Also a whole bunch of labs.

The Imodium has been a huge help!!

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New Diagnosis 7 years 3 months ago #32906

  • 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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Glad to hear you got that under control! How's the sleeping?

Let me know how the results come out. Good luck!

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New Diagnosis 7 years 3 months ago #32984

  • DanC33
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I'm not sure if it's good or bad. The Doc said that I don't have brain involvement with the Lupus, but they did find "heterotopic gray matter anterior left lateral ventricle" what ever that is. And they did find a small cyst on the skull. But at least I'm being taken off the steroids.

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New Diagnosis 7 years 3 months ago #32992

  • jeffrey71
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Dan,

I just read through all your post. I know so little about all this so I will just be quiet for now. But know this, if there is ANYTHING I can do to help you or make your day better just ask.

With everything that has been thrown at you, you are doing great! Just keep fighting the fight!



Jeffrey
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New Diagnosis 7 years 3 months ago #32993

  • 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 anyone explain what that meant? Do you have a follow up with someone to explain that?

It may not be anything to worry about. From what I can see, it is an abnormality that develops before birth. Symptoms usually present before the second decade of life, and can range from no symptoms at all to seizures. Once symptoms begin, they do not tend to progress. So, this may be something that you've always had and might not be related to the symptoms you are having.

BUT - make sure you speak to a doctor to confirm that. Again, still trying to help you to not worry unless you have to! You don't have Lupus CNS involvement, so that is a very good thing!
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New Diagnosis 7 years 3 months ago #33046

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My Rheumatologist is really trying to get me into a Neurologist because he is not sure what it is but there are only a couple in this area so they are booked for months. He has also ordered a few more tests, so who knows. I'm not going to worry about it anymore, I'm going to keep doing whatever needs to be done and take care of my family. He did say that some of the other symptoms I've had for many years are all probably related to the Lupus (hypertension, hypothyroid ) He also decided to take me out of work for a couple of weeks because my legs still are not working correctly.

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New Diagnosis 7 years 3 months ago #33053

  • Sandi
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I have hypertension too but I thought it was because I was over 40.

And yes, do try not to worry because things work out so often and you end up worrying for nothing. I once had a Neurologist tell me that I had seriously high levels of protein in urine. I called my Rheumatologist about it and she said the Neurologist had no idea what he was even looking at and I didn't have any protein. If it's not their specialty, they just don't know. Ha, sometimes they don't know even if it is their specialty!

I also just went through a cancer scare a few months ago. My Rheumatologist got some blood work back that she thought was indicative of lymphoma. So I saw my Hematologist and he said it was nothing to worry about. The things they put you through! I wasn't all that worried about it since I've gone down this road so many times before.

Good idea to take some time off and relax. Regrouping physically and mentally is always a good thing.

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