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Other Platelet Disorders

TOPIC: Blame it on Lupus?

Blame it on Lupus? 3 years 8 months ago #49788

  • Melinda
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That's why we get along Sandi - we are both perpetually cranky :P

Think maybe you increased the Natural Calm too quickly?

The dribbles - in the paper I just got when I had my physical it said leaking is not a normal process of aging, if it is happening to see your PCP, so far I'm good. Interesting that is common with Lupus & inflammation.

Keep me posted on how the Natural Calm is working - but the Big D does not sound like a good side effect, so I don't want to try it yet. I know the majority of my trouble sleeping is from neuropathy it is just getting so bad - since it is impossible to gnaw my legs off at the knees I just am living with it. May up the gab a little bit - but I'm fat enough and that puts on weight.

I'm going to email you again.

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Blame it on Lupus? 3 years 8 months ago #49790

  • 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 haven't even read your last e-mail yet. I tried but my AOL has been acting up.

I don't dribble in my pants....I dribble when I'm trying to go. The past few days I've had normal flow which is unheard of. Maybe the Big D is worth the trade off.

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Blame it on Lupus? 3 years 8 months ago #49794

  • Sandi
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I forgot to add that I've had this pounding heart thing going on for months. I've had my TSH tested twice because of it. Oddly, it was lower than it always has been, 1.something but still in normal limits. Anyway, since taking the Magnesium, that has gotten better too.

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Blame it on Lupus? 3 years 8 months ago #49822

  • 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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This is what I said above:

Taking magnesium glycinate may help alleviate some symptoms if you suffer from chronic fatigue syndrome or fibromyalgia, says Jonathan Prousky, author of "The Vitamin Cure for Chronic Fatigue Syndrome." People suffering these conditions often have a degree of oxygen deprivation to their tissues, which sometimes is related to an inability to properly utilize magnesium in the body. Oxygen deprivation can lead to muscle pain and tenderness as well as fatigue, Prousky notes. Taking a readily absorbable form magnesium---magnesium glycinate or magnesium citrate--as well as malic acid can help alleviate this problem, Prousky says. He recommends 300 mg magnesium and 1,200 mg malic acid a day. Consult a healthcare provider before supplementing with magnesium or choosing a dose, however.

www.livestrong.com/article/271338-what-are-the-benefits-of-magnesium-glycinate/

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Blame it on Lupus? 3 years 8 months ago #49944

  • Sandi
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Steroid IV #3 over and done! I have to take my Mom to the Dr. later and I am really hoping I can get through that. My sister sprung it on me yesterday. I am really not up to it today. :unsure:

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Blame it on Lupus? 3 years 8 months ago #49946

  • Melinda
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Well I'm glad the dribbles aren't really the dribbles that I thought you meant. I don't think Big D is a good trade off for anything - never know when it will hit.

Sandi your heart can pound for other reasons besides a high TSH.
How is your blood pressure?

Sorry you can't go home and stay there today - good luck getting Mom to the doctor. Is an assisted living place in her near future?

Take care!

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Blame it on Lupus? 3 years 8 months ago #49947

  • Sandi
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Yes, I know there are many reasons for a pounding heart, but that one seemed the most logical for some reason. Thyroid is slightly enlarged and then there is Holli. BP has been fine. Could be an electrolyte imbalance...that is the next theory since Magnesium seems to help.

My sister moved in with my Mom about a month ago. Mutually beneficial. They both have appointments at the same time today, so back-up daughter was called. I'd be okay except that every time I stand up, everything turns white and I start spinning. The last two IV's were later in the day and I didn't have plans, so I was fine. I hope this clears in the next hour because I have to go!

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Blame it on Lupus? 3 years 7 months ago #50728

  • Sandi
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Saw the Orthopedic Hand Surgeon today. After the exam, he is sure that my problems are due to both Carpal Tunnel and Cubital Tunnel. I'm being referred to another Neurologist for more tests. He doesn't like the one I went to. He'll deal with the swollen joints after he gets better answers about the nerves. I tend to agree with him about the nerves...that's what I thought in the first place.

Again, I am a hot potato. Doctors never quite know what to do with Lupus patients.

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Blame it on Lupus? 3 years 7 months ago #50760

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Sounds like you have a good Ortho Doctor. Hopefully they can get to the bottom of things and get you taken care of.

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Blame it on Lupus? 3 years 7 months ago #50763

  • 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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We'll see. At least he did an exam. My last Neuro didn't even do that, just did the EMG and went by the results. This Ortho got a copy of the EMG and said that based on the exam, the EMG results didn't match. He sees evidence of both Carpal and Cubital Tunnel. Don't know if it can be fixed or not since it seems to be advanced with muscle damage.

How is it that we go to all of these doctors and things just keep falling through the cracks? I've been telling my Rheumatologist for 2 years that my hands are weak. She'd ask me to squeeze her hand and she'd say, yes, you're right. That was it.

I also have this annoying trigger finger and told the Ortho about that. Didn't say a word; it's like they never care about the small stuff and just ignore it. Then you end up with 50 annoying small problems which would probably be dealt with if you were a patient with only one problem.

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Blame it on Lupus? 3 years 7 months ago #50793

  • Melinda
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What I think it is - if it doesn't fall into place it is ignored. Can't tell you the number of times I have answered yes to the question of are you short of breath and without batting an eye the doctor goes right on to the next question.

I like the sound of this new ortho Sandi, and isn't it something he said he didn't like your last neuro - hopefully he & the new neuro can help you. Do you have an appointment yet?

You doing ok? You have been quiet. [sent you a couple emails]

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Blame it on Lupus? 3 years 7 months ago #50801

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"I also have this annoying trigger finger and told the Ortho about that. Didn't say a word; it's like they never care about the small stuff and just ignore it. Then you end up with 50 annoying small problems which would probably be dealt with if you were a patient with only one problem."

I think doctors get so focused on treating the big items i.e. Lupus/ITP etc... that they forget all these little things can be just as debilitating.

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Blame it on Lupus? 3 years 5 months ago #51347

  • Sandi
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I saw my Rheumatologist on Tuesday. She informed me that she is leaving the practice. I can either see another doctor in this office which is 10 minutes from my house, or drive 45 minutes to see her from now on. I've been through 8 Rheumatologists in the past 10 years. Sheesh.

CBC results are all over the place. Lymphocytes are low, Neutrophils are high and I'm anemic. I've fallen 4 times now in the last 4 weeks....no real explanations although one time I did trip over my dog. I see a Neurologist on Tuesday for an EMG on all four limbs. It never ends.

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Blame it on Lupus? 3 years 5 months ago #51428

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Sorry to hear your having such a rough time :( Hope it goes well with the EMG

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Blame it on Lupus? 3 years 5 months ago #51429

  • Sandi
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That depends. I have carpal tunnel in both arms and polyneuropathy in both legs. I pretty much already knew this. Neither of those explain my symptoms though, so it's on to examining the brain. Funny how carpal tunnel and polyneuropathy are not upsetting at all....just add it to the pile. I'm more worried about the falling and loss of muscle strength in hands.

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Blame it on Lupus? 3 years 5 months ago #51445

  • Melinda
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Carpal tunnel - can yours be taken care of by surgery?

Polyneuropathy can be the cause of your falls and loss of muscle strength in hands. I have lost strength in muscle in my legs but so far not falling thankfully.

All I can say is, neuropathy of any kind is a *itch!!

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Blame it on Lupus? 3 years 5 months ago #51446

  • Sandi
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I don't know if surgery would help or not since it's caused by nerve inflammation that causes the nerve to become trapped. It's not typical carpal tunnel. It's not bad enough at this point to require surgery anyway. He said that it's not the cause of the loss of strength in my hands, neither is the neuropathy. Neuropathy is not the cause of the falls either. He said it would cause an unsteady gait which I've had for years, but would not have caused the falls. I know that they seem to go hand in hand - unsteady = fall, but he insisted that wasn't it. He did rule out steroid myopathy.

So....I don't know. I thought this guy was a Neurologist, but he was a Physiatrist. I'm a hot potato again. Neurologist to Orthopedic Surgeon to Physiatrist and back to Neurologist again. It's been 5 months since I started all of this and I'm back where I started. Two EMG's and both state that nerves are not the cause of my hand problem. My fingers cross over each other when I try to grip, so there is something going on.

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Blame it on Lupus? 3 years 5 months ago #51447

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A Physiatrist? It's sad when this happens and I know this all too well. It seems like when they don't know what is going on they play "kick the can" and hope the next Dr. can figure it out.

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Blame it on Lupus? 3 years 5 months ago #51448

  • Sandi
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Yup, and that is the story over and over again with Lupus patients. I guess his thinking was that if it were myopathy or muscle-related, the Physiatrist could take care of the physical therapy. As it turns out though, it was a wasted trip and co-pay because they couldn't do anything other than the second EMG. Now I have to go back to a Neurologist and start from square one, although we do have 2 sets of EMG results. If he had just sent me to a second opinion Neurologist, I'd have a script for an MRI and would be further ahead than I am now. All I do is go to doctors...I'm sure you know the drill.

HOT POTATO

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Blame it on Lupus? 3 years 5 months ago #51454

  • Melinda
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That is why the surgery is done - to "untrap" the nerve.

Why are they so sure your falling is not from the neuropathy?

I am so sick of doctors appointments too - I really need to get in to the dentist and have him work on a new crown that is causing me to bite my cheek but I just can't bring myself to make an appointment!

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Blame it on Lupus? 3 years 5 months ago #51456

  • 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 know, but if it's inflamed the entrapment might just start all over. I don't know. Many specialists don't know what to do with us. They really don't. So many things are symptoms of Lupus so they never know if something is caused by Lupus or a separate thing.

I know the feeling about doctors. Make the appointment before you mutilate yourself, sweet cheeks! :)

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Blame it on Lupus? 3 years 5 months ago #51467

  • Melinda
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I know people who have had carpal tunnel surgery on wrist [or wherever that one would be done] and are so happy with the results.

Wonder if the neurologist would just look at you as a patient who has polyneuropathy and falls and not at your lupus - it isn't right to judge a patient by their 1 "problem".

Thanks for the smile - you are too funny! :)

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Blame it on Lupus? 3 years 5 months ago #51470

  • Sandi
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They always have to consider Lupus in the diagnosis. The Physiatrist said that the polyneuropathy in my legs is consistent with the type that is common with Lupus. It is caused by inflammation of the nerve endings. A better example would be a Lupus patient who has seizures. They have to figure out if Lupus is the primary cause since Lupus can cause CNS - Central Nervous System involvement. That patient would have to be treated with typical seizure meds AND be aggressively treated with immunosuppressants for the CNS. If the CNS is not diagnosed and they just treat the seizure disorder, it can lead to death. They also cannot just assume that it's CNS and treat with both seizure meds and immunosuppressants, because using those heavy duty drugs without cause can also lead to serious complications.

The problem is that the Rheumatologists are aware of all of these things, but they don't treat many of the problems and send the patients to a specialist. The specialist knows how to treat the problem in a normal person, but most are not familiar with treating the problem in a Lupus patient. That is the reason for the hot potato syndrome. I just got two diagnoses the other day, both problematic and treatable in a 'normal' person, but they didn't suggest a darn thing for me. Same with the trigger finger I told the Orthopedic Surgeon about. He ignored it totally. If anyone else goes in with that problem, they get appropriate treatment. I get shrugs. All of it, every single problem I have, is Lupus related. I don't know if the falling and hand problem is yet. It could be MS, a brain tumor, or some odd Lupus complication. I've found out some things that it isn't, but don't know what it is.

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Blame it on Lupus? 3 years 5 months ago #51479

  • Melinda
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I said that wrong - know lupus always has to be taken into consideration, it is the #1 issue - however when they can't pinpoint a problem to the #1 issue it seems they just quit when further investigation needs to be done. It is easy to blame something on a certain issue [as we have seen ITPers do] when really it is from a different issue.

The rheumatologist I hope is communicating with any other specialist you are being sent to see.

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Blame it on Lupus? 3 years 5 months ago #51481

  • Sandi
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My doctors are not really communicating, but they do send test results to each other. Ye, they do just quit many times unless I push things. I guess I'll have to this time.

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Blame it on Lupus? 3 years 4 months ago #51887

  • Sandi
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Follow up with the Neurologist yesterday. The consensus is that I have small fiber poly-neuropathy that is causing the problems with my hands and the arm and leg weakness. I've known about the poly-neuropathy for 9 years, so that is no surprise. It's finally causing major damage. I have a script for physical therapy, but I never get anywhere with that. Twenty sessions covered by insurance never makes a dent. This is the fourth time. Other than that, can't do anything except keep Lupus under control. Yeah, right.

They went over the blood work that I had done with them 4 months ago. My triglycerides and homocystine levels are high. Oh and by the way, I am pre-diabetic. Nice of them to tell me four months later.

Time for some serious life-style changes I guess.

Dan, where have you been?

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Blame it on Lupus? 3 years 4 months ago #51894

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What was your homocystine level? I had mine tested and it was 11.2. Doctor thought it was fine but then I have been reading that it should be closer to 8.
Diagnosed Jan 2015 at age 50 with 13,000.

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Blame it on Lupus? 3 years 4 months ago #51896

  • Sandi
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Homocystine level was 19. I need to pick up some folic acid.

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