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Other Platelet Disorders

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Blame it on Lupus? 6 years 7 months ago #49116

  • Melinda
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Sorry I was vague - The Grands here and I was hurrying. I can't find the url I was reading that made me think of it after reading that thread - so we can just forget it.

Lately my left big toe has the feel of an extremely extremely tight rubber band around it and at the same time stabbing pains. What a joy.

Sandi I had muscle waste in my leg when I was tested and that was shortly after being told the tingling [only tingling at that time and in only feet] wasn't due to lack of blood flow. So I can believe the muscle deterioration can come on quickly. Your nerves are screwed and sending out the wrong signals, that's neuropathy.

You know though - right now I'd love to just mask it, that would be fine with me. Masking it would allow sleep. Maybe I should have taken that lady's offer ;)

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Blame it on Lupus? 6 years 7 months ago #49126

  • Sandi
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Well, you have nothing to lose by trying Effexor. If you don't like it, you could quit.

I think my feet and legs are affected also but since I don't actually use them for fine motor, it's harder to tell. I have several toes that don't move at all any more and I'm always unsteady when standing and walking. It's hard to tell how bad numbness is because once you start to lose feeling slowly, you don't remember how it is supposed to feel.

I am really trying not to panic. I can't imagine not being able to use my hands. I wouldn't be able to take care of myself at all. Being dependent on others is not something that I am willing to live with.

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Blame it on Lupus? 6 years 7 months ago #49132

  • Melinda
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It's hard to tell how bad numbness is because once you start to lose feeling slowly, you don't remember how it is supposed to feel.

That is so true Sandi!

Effexor - it is an SNRI (selective serotonin and norepinephrine reuptake inhibitor). So if it increases serotonin then does that mean that serotonin may help with neuropathy.

Why I haven't taken it - I don't like pills, I don't like pills that have a long long list of possible side effects (the only good one being 'weight loss') and a long list of possible serious side effects (2 being 'unusual bruising or bleeding' and coma') AND '...venlafaxine may cause angle-closure glaucoma (a condition where the fluid is suddenly blocked and unable to flow out of the eye causing a quick, severe increase in eye pressure which may lead to a loss of vision)' - so I probably won't ever take it.
www.nlm.nih.gov/medlineplus/druginfo/meds/a694020.html

Know this sounds nuts and it would add another appointment which you don't want - but is there any possibility that OT/PT could help with your hands/fingers/arms, to help strengthen them? If there was a chance this would help me I'd do it for sure!! I do exercise, maybe it's helping the muscle waste/damage and maybe not, I don't know.

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Blame it on Lupus? 6 years 7 months ago #49162

  • Sandi
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PT/OT will depend on the results of the EMG on July 3rd. He said we need to know which muscles are affected. I told him that I'd been doing some exercises and asked if it would hurt or help, again, he said that depends on where the muscle involvement is.

When I lost my left hand because of the shingles, we knew that was temporary and PT did help, although I never got back full use. It took six months to get it as far as it would go. It was good enough to do most things and I could do buttons again, etc. Now my right hand is the worst (dominant of course), and this is hard.

You're right, I don't want any more appointments. Between all of mine and taking my Mom to hers also, it feels like that's all I do. But - if there is a chance to gain strength in my hands, I'll do what it takes. Tomorrow is Solumed treatment #2, oh joy!

I've tried all of the SNRI's and SSRI's and they never did much for me either. They supposedly promote sleep which in turn helps the body deal with pain. The last one I tried was Elavil and one day I wanted to just slip into my pool and stay under water. I quit taking it after that.

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Blame it on Lupus? 6 years 7 months ago #49213

  • Sandi
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Solumed #2 down. What an experience. I had a patient next to me who never stopped talking...everyone started totally ignoring her after a while but she just talked anyway. She reminded me of Tucky from Orange is the New Black. While scheduling her next appointment, she told the tech to lie and tell her the appointment was 1/2 hour earlier than it really was so she could make it on time. Huh?

The staff were cranky and on the phone yelling at drug companies and grumping at each other. I said 'Wow this is such a happy place'. One of the quieter staff heard me and giggled. They all kept me quite entertained.

Today is Mom's dentist appointment day which will take up hours, I'm sure. Did I really just have a week of vacation? Doesn't feel like it.

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Blame it on Lupus? 6 years 7 months ago #49219

  • Melinda
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SSRIs and SNRIs may promote sleep but probably once the body gets used to them it's back to not promoting sleep. I just won't take this stuff that can/might/will cause me more dang problems then I already have - to me it is not worth it.

You know it is kind of like a splenectomy - I did not have one back in 1989 when diagnosed because the doctor could not tell me emphatically YES YOU WILL BE CURED OF ITP - why would I let them cut my body open and remove an organ and likely I'd still have low platelets?! So why would I take a medication to TRY to mask my PN symptoms when no one can say emphatically YES YOU WILL HAVE A NEUROPATHY PAIN FREE LIFE FOREVER. But then again - to get that neuropathy pain free life would probably add new problems. I'm so dizzy from going in circles it isn't funny.

Can't wait to hear your EMG results Sandi!

How is the Solumed treating you? Doing any good? Where do you get your infusion? My dil is a certified oncology RN, and those she works with sound great - can't imagine them being grumpy at the infusion center.

Good luck with your Mom and the dentist.

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Blame it on Lupus? 6 years 7 months ago #49224

  • Sandi
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I don't blame you for not trying them. I've tried about 5 of them over the years. My doctors all seem to think they are the answer. They have never done a thing except cause side effects. I never slept any better either.

I get my infusions at my doctors office. Last time was peaceful and the tech talked to me the entire time about the health care system. This time, there was a lot of confusion and uproar. I just played games on my phone and ignored it all except for the occasional laugh. Tucky was getting Benlysta and asking all sorts of questions. I told her more than the staff; they didn't know much. I told Tucky that it was made of human antibodies and she was worried that they came from dead people. I assured her that wasn't the case.

Today I have a lot of bone pain, didn't expect that. It can take a week or two to get benefits, so I have a while to wait.

EMG isn't until next month.

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Blame it on Lupus? 6 years 7 months ago #49238

  • Melinda
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Yeah, know your EMG is next month, not long now really - and I'm interested in the results you get.

Funny you knew more about Tucky's infusion than the staff did. How is the bone pain, gone I hope!

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Blame it on Lupus? 6 years 7 months ago #49239

  • Sandi
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Yeah, I researched Benlysta a few years ago when it first came out. One rare side effect is serum sickness, so you know I won't touch that with a 10 foot pole.

Bone pain in better today, thanks!

My doctors office finally caught up with the century and has online medical records. I haven't seen my blood work results in about 2 years. Not like me to not keep track, but sometimes I just don't care. Ferritin is low and hemoglobin has been a tad low. Of course no one said anything so I guess I'd better start some iron. I'm sure this is contributing to my sleep problems since the RLS has been nasty again.

Platelets were 382k and I'm not happy with that. Too high! Good thing I started aspirin again a few weeks ago. I'd rather they were under 100k.

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Blame it on Lupus? 6 years 7 months ago #49277

  • Melinda
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Has (does) the bone pain go away? Is this helping you at all (I hope!)?

Now you have me curious - wonder if my ferritin has been checked. Did you start iron - how quickly would it help the RLS if it is going to?

One more question :)
Do you feel that once one has serum sickness they are more prone to get it again from something else? (asking since I had it, also know a precious little girl who got it from penicillin when she was 2 years old).

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Blame it on Lupus? 6 years 7 months ago #49279

  • Sandi
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Yes, the bone pain went away. I haven't noticed any real changes as far as feeling better yet. I don't know if it is helping the nerve inflammation or not but I'm sure it's not hurting it. I'll do anything to stop that damage. I've read that steroids, IVIG and Plasmapheresis are treatments for that, but I need to be assessed first. It's just happening so fast! I've lost so much in just the past few months.

I've noticed that iron helped the RLS within two weeks. I guess it bumps the ferritin level up enough to make a difference. I can't take iron often though because of the constipation, so I go slow.

As far as serum sickness, no, I don't think having had it makes a person more susceptible unless they have a sensitivity to a particular drug. I can take antibiotics known to cause serum sickness and not have a problem. I don't want to guinea pig myself for Benlysta though because those biologicals scare me enough as it is.

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Blame it on Lupus? 6 years 6 months ago #49536

  • Sandi
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EMG tomorrow morning. :(

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Blame it on Lupus? 6 years 6 months ago #49546

  • Melinda
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Good luck this morning Sandi!!

How is the RLS - hope the iron is starting to help.

I'm with you on biologicals - but for some it is the only answer.

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Blame it on Lupus? 6 years 6 months ago #49567

  • Sandi
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I've been taking iron every other day and RLS has seemed better. However, I had problems last night and only got two hours of sleep. I had to be up at 6:30 to get the EMG today. I am one cranky woman!

While I was awake fiddling around last night, I moved my hand and heard a tendon in my finger snap. I woke up with trigger finger in my right hand. Now I have even less use of it. Typing is a challenge.

Anyway, spent two and a half hours at the Neurologist's office today. EMG done on both sides (arms and hands). I met with the Neurologist afterwards and he said: I have slight carpal tunnel, but there is not as much nerve damage as I thought and it is not the cause of the weakness and deterioration of my hands. He thinks it is due to connective tissue damage/inflammation in joints, tendons and cartilage. I do have swollen joints on both hands and he thinks that is causing it all. He prescribed wrist splints that I need to wear at night, and I have to see an orthopedic surgeon who specializes in hands. He gave me a phone number. He's not sure if anything can be done or not. Not very reassuring, but I'm trying not to worry about it too much until I see this new doctor. I'm not sure if this is good news or not. Considering all of the pins and needles, I really thought it was nerve related. I guess the cause doesn't matter; whether or not it can be fixed or treated, does. He wants me back in four months.

Hey Melinda - we've discussed C-Pap's before. I always wondered if it were possible to add something to the water to make the smell more enjoyable. I miss going to bed and smelling the scent of lavender or vanilla or whatever and think that is the worst part of wearing a C-Pap. Anyway, all research has shown that you cannot add anything to the water. However, I started using essential oils for the calming affects and I read that people were putting a few drops on their filters. I've been doing that the past few nights and it is so nice! I have one called Inhale and it actually helps you breathe. I want to try Patchouli tonight (love that smell, I'm weird). I've read that if you use 100% pure oils, there is no harm in it. Have you ever heard of that?

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Blame it on Lupus? 6 years 6 months ago #49579

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Sandi, So sorry they couldn't give you a more definitive answer to those pins and needles... maybe Paresthesia? Here's a good discussion on it..jenlynn401.wordpress.com/2012/04/11/paresthesia-a-neurological-issue/


I've put eucalyptus oil when I have a colds/flus in my machine for years without harming the machine. The only thing I've noticed is when too much oil is added it can leave a weird taste. Now you've given me some new ideas to try in mine because you are right the smell... is not enjoyable at all.

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Blame it on Lupus? 6 years 6 months ago #49582

  • Sandi
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Dan:

I know I have paresthesia and also intermittent polyneuropathy in arms and legs. It's nerve inflammation, and I don't worry about it as long as it isn't causing any damage. I was afraid that was happening. Symptoms now are the same as when I had shingles and it affected the nerves and muscles in my left hand. I knew that was temporary though, this is constant and progressive.

Now I flipped around and am looking up MCP arthritis.

I'm glad to hear that you put oils in your C-Pap too. I'm not the only one!

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Blame it on Lupus? 6 years 6 months ago #49594

  • Melinda
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Good the RLS is getting better. Are you still cranky - notice I didn't talk to you yesterday because you said you were cranky :P

Wish you had gotten a more certain answer but at least your neurologist is sending you to had hand surgeon to check things out. Also the wrist splints - hope those help. When my hand/wrist was in a cast for a few months & then the splint for a couple months neither bothered me at all so hope the splints don't bother you. (I really do like my hand ortho surgeon).

Sandi nerve pain from shingles can last and last and last - could the pins and needles be that? My husbands uncle had shingles and he never did get rid of the nerve pain.

I have arthritis in my hands and fingers/thumbs - it is so much fun, ha!

Regarding the C-Pap - I don't smell anything different - which is surprising because since I quit smoking I smell things more ("things taste better when you stop", for me it's "smells are noticed more").

I don't think I would like putting anything in the water or on the filter. I change the filter about ever 2 weeks (insurance allows me a filter a month), use a clean nose pillow (why they are called that is beyond me) - so maybe that's why I don't smell anything differently with it.

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Blame it on Lupus? 6 years 6 months ago #49597

  • Sandi
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Ha ha, my crankiness is a creature that comes and goes from minute to minute. I believe I was cranky about 4 times so far today.

I've had this same paresthesia and polyneuropathy for about 8 or 9 years, so I'm not questioning the cause and it's not from the shingles. I already know the cause - Lupus related nerve inflammation. I guess I'm not explaining myself well. The symptoms with my hands are that I drop things constantly, have weakness in hands and forearms, am losing fine motor skills like the ability to button, sign my name, open lids, spray bottles, etc. It's getting concerning because I see it getting worse and worse. Cutting food is hard and when I close my hands, my fingers are distorted and on top of each other.

So I researched MCP arthritis and Lupus/RA and came up with what's really going on. If it's not treated, it will lead to total hand disability and cause ulnar deviation, which is when all fingers begin to point towards the pinky and fingers can become permanently bent. It destroys tendons and cartilage. Surgery is sometimes an option and they use silicon joint replacements. I can't see where these wrist splints will help that at all, so maybe he gave them to me for the carpal tunnel. I should have asked. I don't mind them when sleeping, but the way they fit, I can't do much when they are on because they cover too much of my arm and fingers. I couldn't even hold or type on my phone last night.

It's not that my C-Pap smells; I just miss smelling things when I go to sleep. I like lavender lotions and vanilla candles, etc....they are calming and promote sleep. Since I have so much trouble sleeping all the time, I thought that adding scents to the C-Pap would help, and it has to some extent. I will go through filters more often, so I'll have to get them from Amazon or something.

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Blame it on Lupus? 6 years 6 months ago #49600

  • Melinda
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Ok gotcha (on the crankiness and the hands :) )

Also know what you mean that the fingers could all point towards the baby finger - met a woman years ago and both her hands were that way - all 4 fingers on both hands were angled towards the pinky & the pinky was bent that way too.

I don't have that kind of arthritis in my hands but I have it in weird spots - that joint at wrist that is straight down from baby finger - lordy does that one hurt, padding is gone. Then the thumbs and now finger joints. But my thought is at least I'm still waking up in the morning.

I love lavender - have the best lavender spray I will use in our bedroom at night, but then once the mask goes on I can't smell it. Ok - thought you meant your CPAP smelled.

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Blame it on Lupus? 6 years 6 months ago #49605

  • Sandi
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No but the C-Pap smells if I happen to burp in there! Disgusting! Having reflux, sometimes that is nasty.

Yes, that is exactly what I'm talking about with the hands. I can live with the pain, but not the disability that comes with it. You had thumb surgery, right? What was the reason for that? I forget.

My biggest fear with Lupus has never been dying from it. I accept that. But I always did worry about being debilitated.

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Blame it on Lupus? 6 years 6 months ago #49610

  • Melinda
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Do you have a mask that covers mouth & nose? Reflux is nasty - scares me when it happens while I'm sleeping, that is one rude awakening!

Basal joint surgery - the bone on bone pain from arthritis of the basal joint got to the point where it was making me sick to my stomach. Surgery in each thumb 11 months apart. Luckily my thumbs weren't disfigured yet, but the pain was not good at all.

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Blame it on Lupus? 6 years 6 months ago #49618

  • Sandi
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Yes, my mask covers mouth and nose. Had to go that way, I'm a mouth breather due to chronic sinus problems.

So your thumbs are fixed?

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Blame it on Lupus? 6 years 6 months ago #49623

  • Melinda
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I thought I was a mouth breather due to chronic sinusitis but I do fine with the mask that has the "pillows" at nose.

Yeah, removing that bone and putting the tendon in place [no pins] seems to have done the trick for now. No bone on bone pain in that area - just other areas of the hand/fingers.

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Blame it on Lupus? 6 years 6 months ago #49627

  • Sandi
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I tried the nose pillows. Couldn't do it.

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Blame it on Lupus? 6 years 6 months ago #49628

  • Melinda
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The triangle one caused welts on my face were the padding was, guess was allergic to the stuff. Took me a long time to find the one I'm using - do like it as much as one can like a CPAP mask.

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Blame it on Lupus? 6 years 6 months ago #49634

  • Sandi
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I had about four or five different ones too until I found one that I liked. It fits well and never leaks. I've had others where I woke up several times a night to adjust the mask. Two of them were nose jobbies.

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Blame it on Lupus? 6 years 6 months ago #49658

  • Melinda
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Sent you an email

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Blame it on Lupus? 6 years 6 months ago #49663

  • Sandi
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Good thing you told me. I rarely check those.

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Blame it on Lupus? 6 years 6 months ago #49690

  • Melinda
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Well I didn't know if you would be cranky or not.................. ;)

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Blame it on Lupus? 6 years 6 months ago #49785

  • Sandi
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Well now I'm on a new kick. The lemon juice didn't pan out.

My sleeping problems come from two things: bone aches (all over body RLS) and intense bladder pressure. I've isolated the RLS to low ferritin, so can fix that with iron pills. It works every time. I usually slack off with them though because I have constipation problems to begin with and iron makes it worse. I can't find a happy medium with it so I just start taking them again when it starts back up.

I started reading about Interstitial Cystitis and I'm sure that is what I have. It's been going on for many years. Feels like a UTI but it's not. I always feel the need to go but I get dribbles 50 times a day. It's much worse at night and wakes me up. It's common with Lupus and is due to inflammation. I've read that there is no real treatment for it, just meds that may or may not work. I do not want to jump on that merry-go-round at all. Tests and med trials and side effects, no thanks! So I read that some people have luck with Magnesium (my wonder supplement that I've spoken about before). I also slacked off on that. One supplement in particular kept coming up: Natural Calm.

I went and bought some at GNC. It's basically a Magnesium Supplement...it's Magnesium Citrate in powder form which is one of the best types of Magnesium because it's easily absorbable. Magnesium Oxide is the worst and is usually what is sold in the drug stores. I also have GNC's Super Magnesium which is comprised of Magnesium Asparate, Lactate and Citrate (three good ones). I've read reviews that Natural Calm helps with bladder problems, constipation, relaxes muscles and aids with sleep. You're supposed to mix 1/2 tsp with water and drink it, but slowly work your way up to two tsp a day. Well I did 1/2 tsp in the morning and 1/2 tsp before bed and it has been working for all above mentioned problems. I've slept through the night 4 days in a row but now have had major Big D since I started using it. Guess I'll have to cut back. It's too bad taking iron and Natural Calm don't balance each other out. :woohoo:

It's too soon to tell if this is the fix, but it looks good so far. I'm sharing this information (even though it's TMI) because maybe someone can benefit from it.

And yes Melinda, I'm still cranky! It's a perpetual thing. :blink:

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