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Other Platelet Disorders

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New Diagnosis 9 years 2 days ago #34290

  • 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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That's a very good idea. I usually do that too.

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New Diagnosis 9 years 1 day ago #34315

  • DanC33
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I've had to learn a lot these last couple of months. (and most of it from this forum) But I was raised to trust people like doctors so I really never questioned what they said. Until now! I found a couple of websites that patients use to rate doctors and what an eye opener!! Fortunately my Primary Care doctor is one of the highest rated in the entire state.(actually one of the highest on the west coast) And Sandi you were right about my current Rheumatologist, he rates VERY poorly (as you suspected) not because that he misdiagnoses or stuff like that, he just does what he's doing to me. He refers people everywhere, he either doesn't have the ability or the knowledge or ? to make a decision.

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New Diagnosis 8 years 11 months ago #34424

  • 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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Anything new, Dan? How are you doing?

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New Diagnosis 8 years 11 months ago #34516

  • DanC33
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Still having the tremors and seizures. :( And my wife noticed bruises all over my abdomen, back and legs. Also some petechiae on my legs and arms, so I had a CBC done late yesterday afternoon. So I hope my platelets are not dropping again. I'll get the results today.

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New Diagnosis 8 years 11 months ago #34549

  • jeffrey71
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Dan,

I hope you are doing better. Man you have had a plate full. If you make good friends with the lab folks you can get your CBC results in about 5 minutes. I get mine before my doc does. Running joke for me and him is that he ask me what we need to do and if there is any change! The lab ladies take good care of me but I spoil them with cookies and such.. And, one of them is a red head and that is a topic for another day......... :blush: You take care and keep us posted.

Jeffrey
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New Diagnosis 8 years 11 months ago #34571

  • DanC33
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The lab called me with the results and my platelets are at 149K :cheer: But she said that my WBC and my globulins and my RBC were all abnormal (very low) She said that it could be due to the Cellcept or the Medrol, she said that both of these drugs reek havoc on lab work .

On a different note I am finally getting into the Neurologist on Monday! :woohoo:

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New Diagnosis 8 years 11 months ago #34573

  • 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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Yeah, the meds can cause that. My whites are always low. I'm about a month overdue on my labs. Just don't feel like going. I'm glad your platelets are good!

Good luck on Monday! Let us know how it goes.
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New Diagnosis 8 years 11 months ago #34652

  • DanC33
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Just got in from the Neurologist, and he said that my EEG was normal and the lesion has been there since birth. He did confirm the polyneuropathy and said that most if not all of my symptoms are probably Lupus related.(he also said that stress isn't helping either) As he put it though I have way too many "ands" (Lupus and arthritis and ITP ect..) So he said running anymore MRI's or any tests like that would be useless until the Lupus is under some kind of control because he said that Lupus imitates so many other diseases. He also said that I have the most aggressive case of Lupus he's ever seen.

On a funny note(at least to me) he said that I walk like a 1 year old just learning how to walk (wobbly and unsteady)
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New Diagnosis 8 years 11 months ago #34658

  • 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 Dan, all in all the news isn't bad. A normal EEG is great! Neuropathy isn't fun, having it myself I know it's a pain in the butt. As long as it's not progressing quickly you can get it under control. Good news about the lesion too.

You do seem to have an aggressive case of Lupus, but keep in mind that he probably doesn't see all that many Lupus patients to compare you to.

When do you see the new Rheumatologist? What did the Neuro say about the seizures? Does he think that is Lupus-related too (CNS)?

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New Diagnosis 8 years 11 months ago #34659

  • DanC33
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I go to UCSF Rheumatology department on Friday of next week, I'm going to see a Rheumatologist that deals specifically with very aggressive and odd forms of Lupus. She also specializes in Ankylosing Spondylitis.(which the Neurologist says that I'm a good candidate for that as well) The Neurologist knows her and says she is one of the top 5 Rheumatologists in the country. So hopefully she can get to the bottom of this.

The Neurologist does think that the seizures are Lupus related, he also thinks the Rheumatoid arthritis is playing into it as well. He says that both can attack joints, nerves and well just about anything with connective tissue. He also advised me to set up an appointment with a Nephrologist to make sure my kidneys aren't involved as I have been having VERY foamy urine.

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New Diagnosis 8 years 11 months ago #34661

  • 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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When was your last urinalysis? They should be able to tell if you have protein in urine from that.

Your Lupus sounds a lot like mine. I have pretty much the exact same things going on, although not quite as pronounced. I also have joint, muscle and nerve involvement. There was a time when the neuropathy was a lot worse and I was starting with autonomic neuropathy which was scary. I was so afraid that would progress as well, but it didn't and it actually got better.

I am so glad that your appointment is coming up soon. Hopefully he will get you on a good treatment program. I'm betting on Benlysta or Cytoxin, two treatments that I have not tried. I've been through everything else though!
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New Diagnosis 8 years 11 months ago #34667

  • jeffrey71
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Dan,

Hang in there buddy! It sounds like you are finally headed down the right path. Keep us posted!

Jeffrey
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New Diagnosis 8 years 11 months ago #34778

  • DanC33
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My last urine test(about 3 weeks ago) was high "normal" and CPK was also high "normal" so they are starting to get concerned. All of my prior ones were normal.

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New Diagnosis 8 years 11 months ago #35122

  • 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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Hey Dan - update?

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New Diagnosis 8 years 10 months ago #35333

  • DanC33
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I just got home from UCSF, I was just supposed to be there for a consult with their Rheumatology department and they ended up keeping me for a week. They are not exactly sure what's wrong with me and they are not sold on me having Lupus either. They did say that I do have 4-5 of the markers to confirm Lupus but they are 80% sure that I have another autoimmune called dermatomyositis, which can have the same markers.(or it could be both) They said that the biggest difference between the two is lupus usually attacks internal organs and dermatomyositis attacks muscle, skin and joints and can be far more aggressive(they called it lupuszilla) and the treatments are a little different. They also said that all the meds I've been on are messing up the tests so they are taking me off all the meds for about 8 weeks and they will rerun the tests. They also said that the Rituxan is still showing up in my system.(after 8 months)

The many Neurologists (about a dozen) that I saw are thinking that I probably have Parkinson's disease as well. :angry:

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New Diagnosis 8 years 10 months ago #35336

  • 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 glad you are finally getting the help that you need. Going off of all meds for that long will be hard...I hope you get through it okay! Have they suggested any treatment plans?

They are right about Lupus possibly affecting internal organs, but I have not had any organs affected either. I have always had muscle, joints, nerves and blood involvement. Those are well documented symptoms of Lupus.

I hope you get the correct diagnosis and have improvement soon. Keep us updated!
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New Diagnosis 8 years 10 months ago #35528

  • Melinda
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Dan I've been keeping up on this thread, reading.

It sounds like you are in good hands at UCSF - I'm impressed that your consult ended up with them wanting you there for further testing and exams. It sounds like they will come to the bottom of this and figure things out.

Best of luck to you!!

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New Diagnosis 8 years 10 months ago #35538

  • DanC33
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I go back to the Rheumatologist next week, I also have to go see my Hematologist tomorrow. My primary doctor got all the notes from UCSF and noticed my platelets dropping(20k)so here we go again. She also said that UCSF thinks I do have both Lupus and Dermatomyositis but they only say about 80 % sure.

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New Diagnosis 8 years 10 months ago #35574

  • jeffrey71
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Dan,

Been thinking of you! I wish you the very best. Stay in touch!

Jeffrey
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New Diagnosis 8 years 10 months ago #35598

  • DanC33
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Got good news from the Hematologist, he said my platelets shot back up to 149K :) But the rest of my blood work is a mess. He said it's because of tapering off all the various meds. I'm also having some serious muscle wasting in my legs (now having to use a walker) My Creatinine levels are over 600 CPK levels are very high as well. I hope they can get to the bottom of this!

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New Diagnosis 8 years 10 months ago #35622

  • Sandi
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I hope so too, Dan. Keep us posted!
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New Diagnosis 8 years 10 months ago #35670

  • Rob16
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Dan, forgive me if I am addressing the obvious, but has anyone checked to be sure your muscle weakness isn't caused by potassium deficiency? If you have been taking prednisone, it has a mineralcorticoid effect and depletes potassium levels. Diuretics can add to this effect. The maximum dose of potassium permitted by the FDA in OTC supplements is 99 mg, because excessive potassium will stop your heart. Over-the-counter supplements are nearly worthless: they can barely make a dent in a normal body's need for 4700 mg of potassium spread out over a day , much less the potassium need of a body on steroids.

I can't tell whether you have been taking glucocorticoids, so this might be irrelevant. I am also aware that there are many other possible causes. I just didn't want an easy one to get overlooked.
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New Diagnosis 8 years 10 months ago #35674

  • DanC33
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They did check my potassium and it is OK. But they did give me 400mg of potassium while I was in the hospital just to make sure that wasn't adding to the problems. As far as steroid use I've been on various forms of them for over three years now.(Prednisone, Medrol, Dexamethasone)

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New Diagnosis 8 years 10 months ago #35701

  • RHofm50129
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Sandi, you have to be the most well informed person I have ever come across! You are a great resource for people.

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New Diagnosis 8 years 10 months ago #35709

  • 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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Thanks, Roberta. I like to research and learn, that's all there is to that.

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New Diagnosis 8 years 10 months ago #35913

  • DanC33
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They finally made a diagnosis that makes sense. They are saying I have both Lupus and Dermatomyositis. So now I am taking Methotrexate on top of everything else. :(

Sandi, I also agree with Roberta.

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New Diagnosis 8 years 10 months ago #35924

  • 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:

I'm sorry about the dual diagnoses, but hopefully you will get the right treatment now. I used Methotrexate for about a year and a half, first pills and then I did injections. I didn't have much in the way of side effects, but I did have to start taking Imodium prophylactically. Otherwise, I'd end up with a major surprise and no time to get to the bathroom. That was a lot of fun at work. MTX ended up causing lung damage though so I had to stop it. Oh, I was also getting sick all the time with bronchitis and pneumonia, so it really did a job on my immune system. My white cells have been pretty low ever since MTX. Now I'm on Imuran and having problems from that. None of these meds are easy.

My former co-worker's 4 year old grand daughter was recently diagnosed with Dermatomyositis. Since I quit my job though, I don't get many updates so I don't know how she is treated.

I have my fingers crossed for you, Dan. Thanks for updating. I'd be worried sick if you disappeared.

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New Diagnosis 8 years 10 months ago #35931

  • DanC33
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I have heard that MTX has some very nasty side affects, so I hope it does the job. But they still won't let me go back to doing any kind of work. (I'm going CRAZY :silly: sitting at home) It might have to do with me now using walkers and wheel chairs to get around.

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New Diagnosis 8 years 10 months ago #35934

  • 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, you'll have to find yourself some hobbies :) . I have not been bored yet since quitting my job. I find plenty to keep me busy, mostly catching up with things I could not do while I was working. My whole house fell apart in the past 7 years since the Lupus diagnosis. It takes me forever to accomplish anything, but I do bits at a time and eventually it gets done.

Catch up on TV...buy all of the Breaking Bad DVD's if you haven't seen it - fantastic show! There are many other things to do, you'll find something!

Are you taking pills or doing injections?

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New Diagnosis 8 years 10 months ago #35941

  • DanC33
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I am taking the pill form of MTX 17.5mg once a week and he also started me on 1mg of folic acid everyday.(along with the long list of other stuff)

I have been trying to keep up with my music, I play a guitar and a few other things but the neuropathy and arthritis won't let me play very long. I also have caught up on NCIS and Bones reruns. I will look into the Breaking Bad series as well.

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