Swelling in hands/clubbing of fingers?
 

Hey guys,

I'm just wondering if any of you ever get swelling in your hands, especially after standing for a bit or walking for a bit...I used to only get this (this started years ago) after walking for a long time or standing for a long time....Now I wake up and have this, mainly in my right hand...It's really weird...It makes my hands feel really stiff...I've also noticed that the skin around my nails seems fleshier, again, only on my right hand...I looked up this weird symptom on the net, and found that it's called 'clubbing,' and seems to have really bad ramifications:(...Sometimes, the swelling will go down, but I have no idea what causes this change...

If I'm cleaning, or drawing/painting, or play my guitar, the swelling gets bad...I don't know if it's because my hand is in a downward position, or if it's from the use of it...I also wonder if it's because I have neck/chest weakness and maybe I'm pinching a nerve or something (I hope it's that :S)....Can anyone sorta relate to this?

Talk to you soon!

Hi Nicky!
 

Hi sweetie!:hug: I do not have that, only massive swelling in my feet -so much so that the skin actually cracked - dr's say it is due to the meds.......

Other than that, how are you?

Love,
Erin:hug:

My hands swell slightly and feel stiff when I get dehydrated. I don't like the taste of tap water so in the past I rarely drank water...so this happened a lot throughout my life. The swelling was never enough to cause problems, but I have learned how to make it go away. Drink water! I experienced this hand stiffness more when I started taking Mestinon and have finally developed a habit of drinking water regularly. No hand swelling/stiffness with plenty water.

This may not be what is happening with you, but I hope this helps.

:)

Hey Erin and Desertflower,

Sorry that it took forever to reply...I've been feeling down for the last few days...

I do drink a ton of water...I'm always thirsty, so I've always got a bottle of water close by...It doesn't help, though, in terms of the swelling...I don't know what's it's from, but it's mainly in my right hand...My fingers looks like sausages...

i used to get a lot of the swelling in my ankles and feet too, but not so much anymore, maybe because I don't stand for lengthy periods of time...In the heat, these symptoms are much worse...

I know that i have chronic low blood calcium, which the docs. can't explain since I drink milk like it's no one's business...So it might be some sort of electrolyte inbalance, but who knows...I just found out yesterday from my endocrinologist that my thyroid is on the verge of failing...My levels are borderline abnormal, so that could be it too...

Just want to feel better already! :(

Geez, I can hardly keep up with you guys lately!

Nicky, Have you been seen by a cardiologist? Edema is not normal, no matter what the cause is.

The reasons for low blood calcium are many. And low calcium can adversely affect MG, and your heart. Has your endo checked your parathyroid levels? Have they done a corrected calcium? Is your albumin low? Anything else?

You had a thymoma, right? See, my brain is fried. Could a little bit of the thymic tissue made its way to the parathyroid (same vicinity)?

Are you having an autoimmune attack of the thyroid? Have you had the thyroid antibodies done?

http://www.fpnotebook.com/Renal/Edema/Edm.htm

I have edema but it is "probably" from capillary permeability. They pumped me too full of IV fluids in 2004 while I was on DDAVP (helps a person absorb fluid). Idiots.

I hope you can figure all this out. Have they done an ultrasound of your neck and all those pesky little glands in there?!!

Annie

Hi Annie,

I do have antibodies to my thyroid...I've had them for at least 6-years...I think they're finally working :S

I had an ultrasound of my thyroid a few months ago and it was totally normal looking...

I've had tests for my parathyroid glands...Those are normal too...I had that done during my first hospital stay for shortness of breath...The doc. said that I prolly have a vitamin D deficiency, which makes sense in terms of the calcium...I wished that he woulda actually tested the vitamin D levels to be sure...

I have a cardiologist...I have mitral valve prolapse, so I see him sorta regularly...I just had another event monitor for two weeks because I keep feeling like my heart is skipping or something...The docs. always say that my prolapse is really mild, though...But, I did read that it's common for people with thyroid antibodies to have a prolapse...Anywho, if the prolapse is causing the swelling, it's not so mild!

My worst fear is that it's my breathing somehow causing it...The breathing and the swelling have been so progressive...Over the last 4-years or so...I get so scared that i've caused myself to get emphysema from stupid smoking...The worst is when you feel like it's your fault...

Oh yeah, and my albumin is low...I also have almost zero cholesterol...But the cholesterol test was run after I had a plasma exchange, so I'm not sure if that affected it...It prolly did

P.S. What's 'corrected' calcium?

Note to self: Quit smoking!

http://www.mdcalc.com/calcium-correc...ypoalbuminemia

Maybe you don't have enough pancreatic enzymes. Without those, you can have low calcium, iron, albumin, etc. With all those deficiencies, I assume they have looked at your kidney and liver functions? Celiac disease?

Good grief, I thought I had a lot going on.

Smoking is so damn hard to quit. My Dad was a smoker and tried so many times to quit. He "had to" when he was in various hospitals the last 16 months of life.

I hope you can get all this figured out.

Annie

Hi Annie,

Last year, I was having a lot of digestive problems...I kept getting stomach bugs and would be sick for a couple of days here and there...I also went through a period of time last summer where I was severely constipated for like 2-weeks...I have never experienced anything like this...I actually had to go to the hospital to have an enima...That blasted hospital didn't even do a stool sample on me...In retrospect, I honestly think that the thymoma caused this episode of constipation...I read that it can cause 'pseudo-obstruction' of the intestines, and can randomly resolve itself...

Anyway, this lead to me seeing a gastroenterologist who suspected I might have celiac's disease mainly due to the fact that there would sometimes be a lot of 'fat' in my stools (sorry for the image...lol)...So I had a colonoscopy and a duodenoscopy, and she said that everything was normal...However, she did order a test for the antibodies for celiac's, and I never got around to getting it done...I know, i totally regret it because I still wonder if I have the antibodies but they haven't damaged my intestines yet, but I sorta doubt it...I heard that having a look at the intestines is the gold-standard in terms of diagnosis for that disease...

My neurologist ordered tests for my liver and they were normal...I'm not sure about my kidneys, but I should prolly get them checked out since I have antibodies to dsDNA, and plus I'm taking a crap-load of prednisone and mestinon and vitamins...

I know...I do have a lot going on...I knew that this would happen, you know? This is why I was so vigilant in the past about my joint and muscle pain...I knew that it wasn't normal to feel that way, but I could never get anyone to believe me...I just wanted to know what was causing it so that I could make whatever changes I needed to prevent things from getting worse...But I realize that there was no way anyone could have suspected that I had a thymoma with joint and muscle pain being the initial symptoms...But I think having those autoantibodies should maybe prompt doctors to check for a thymoma...All of my current doctors seem to think this is why I have so much autoimmunity going on, because of the thymoma...But hinesight is 20/20!

looking at the intenstine is not the "gold standard", the "gold standard" in celiac, if one actually exists, is looking under the microscope at a biopsy specimen.

if you read Jerome Groopman's book-how doctors think (which I personally think is a "must" for any physician or patient), the first chapter is about a young woman who was "diagnosed" for many years with anorexia/bulimia and other similar diagnoses, and fortunately she eventually reached a gastroenterologist that actually listened to her and used more then one neuron in his brain to think it over. she had a severe and atypical case of celiac, that was only seen on a proper biopsy specimen, that was not done for 11 years! and had she not reached this guy on time would have probably died from her "psychiatric" problems.

I am not saying that you have celiac or not, but if you do, then prednisone will do nothing to it, and the only effective treatment (to the best of my knowledge) is a gluten free diet.

also, celiac can cause neurological problems, and have other complications if left untreated. so if this was seriously considered, I would persue it further.

alice

Hey Alice,

Thanks for the advice! I will ask my doc. to check me for the antibodies again...

Do you happen to know what might cause the swelling I'm having in my hands? What conditions could cause this? If it is my breathing somehow, how does it cause the swelling?

Thanks in advance!

http://www.hopkins-arthritis.org/ask...-test-734.html

If you do indeed have lupus, then you need to be seen about the edema. If your kidneys are "unhappy," which they often can be in lupus, then you need someone to figure that out. Nothing to mess with. There are a LOT of causes for edema. One main one is congestive heart failure.

Do you have a good rheumatologist?

Have they checked the RA antibodies? (rheumatoid arthritis)

I hope you will get someone to help you soon. And have them do those celiac antibodies! I have celiac and the diet is not bad at all.

Annie

Hey Annie,

I've been seeing a rheumatologist for maybe 4-years or so...I called his office a couple of months ago to go in and see him...I haven't seen him since my MG and thymoma were diagnosed...He had always told me in the past to exercise, not worry so much, and eat well...Maybe this would help my 'arthralgia' (which was actually arthritis, only my joints were never swollen when I'd go to see him) go away...

Anyway, I called his office and told the secratary about the MG and thymoma and that I wanted to see him for a follow-up...Last time I saw him was in November of last year...She said that I need a new referral and that he wouldn't be available until November...She said that I need the referral because that would have been exactly one year since I would see him even though I called at the end of August to schedule the appointment!

Maybe he feels weird about dismissing me for all these years and telling me to exercise, and not worry so much! lol...How can a person exercise when their knees are swollen and they almost pass out from walking on a treadmill...It's not like I didn't have any tests that indicated that I had autoimmunity, either...Anyway, I'm digressing into bitterness...Just wanted to vent a bit too...lol

They've checked for RA, it's always negative...

Would congestive heart failure show up on an ECG and ultrasound of the heart?

Yeah, and maybe your "rheumatism" will feel better if you go sit in your rocker and knit for awhile. :eek: No offense to any of you who knit. Better than being a knit-wit.

I volunteered 10 years of my life to the local lupus foundation. Lupus sucks. It can be managed but it also can be a very dangerous disease. (I'm lecturing the doctor, not you, because I'm ticked off.) I'd hide too, if I were him. That antibody test is VERY specific to lupus. I have seen firsthand how it impacts peoples lives.

Yes, they can "see" congestive heart failure on an echo. It's not really something you see but has a lot of criteria such as a low ejection fraction, etc.

Lupus can attack anywhere in the body. You are probably doing okay because of the Pred. Pred can cause edema too, especially if you have too much sodium. You simply need a damn good internist who will send you around to GOOD specialists and then come up with a plan for you. This is plain silly (not you, the doctoring).

You are very smart, Nicky. You know the deal. I could literally go nuts when I think about how doctors treat (mainly) women.

And the RA would be negative on Pred but I suppose you've had it off of it too?

You know what? I think you should list all the diagnosed conditions you have, along with all the positive test results and all their associated symptoms. Then bring the list in to an internist. Watch their jaw drop as they quickly arrange for tests and appts. Wish I could swear.

:hug:
Annie

Hey Annie,

Sorry that it took so long to reply...I tried replying last night, but my post got deleted, and I got one of those error messages...argh!...lol...I have been tested for RA before prednisone, a few times, and it was always negative...

I do have a list of my diagnosed conditions and undiagnosed symptoms on my comp., but I always feel too nervous to print it and show it to my doctor...I think that I'm afraid that it will be ignored, and it's sorta my last hope...

I was going to ask you...If an ANA is positive, is it because one of the other lupus tests are positive? Like the anti dsDNA test? Or are those two seperate tests? And what does the ANA attempt to destroy? The nucleus of which cells? In other words, what are the symptoms of ANA? I know that the dsDNA destroys the kidneys, but I don't understand why that happens...It's so weird...

This is also sorta why I was very nervous to have a thymectomy, and wanted to ask my surgeon to just remove my thymoma...but I know that's sorta stupid, because the tumuor will come back...But I was nervous because I have read about people with MG getting LUpus after having a thymectomy, especially when they've had 'dormant' antibodies floating around, like me..

When you were working for the Lupus foundation, did you ever come across someone who had MG and Lupus?

Thanks for your help!

This describes the ANA test pretty well. It's not disease-specific, like the lupus tests or the MG tests are.

http://www.labtestsonline.org/unders.../ana/test.html

With lupus, it's both antibodies and inflammation that destroy the body (including the kidneys). Lupus is considered an autoimmune inflammatory condition. Some people only call it an inflammatory disease. Whatever. In lupus, various parts of the body or body systems are "attacked" and damage is done (just like in MG).

Any surgery could make a disease state worse or bring one on. It is a risk that only you (and your doctors) can decide is worth taking.

I knew one woman who had both lupus and MG but I didn't know anything about MG back then (1990's), so I didn't ask lots of questions. There were two or three people on the Braintalk forum years ago that I know had both lupus and MG. The main approach (reducing or stopping the immune process that is attacking you) is the same but there are so many differences between the two diseases!

The most important thing you can do is to see a doctor and get diagnosed if you have lupus. And treated appropriately. I have known people who have died from lupus but I've also known people who are okay. It runs the spectrum, just like with MG.

Being vigilant with lupus is really important, especially when any new symptom comes up. That damn disease can attack anywhere at any time. That's why when I learned of it years ago, I had to volunteer my time and do something to help.

Nicky, I hope you will get some real help soon. You deserve to know what is going on.

Annie