Dr. Strange Hand

Good news!

Since backing off to the 2X a day dose of the Gabapentin, I haven't had anymore twitching!  I have also noticed that the burning and stinging pain in my hands is much less, and they even tingle less than before.  The shards-of-glass joint pain is still ever present, however, and my skin is feeling very tight today.

Bad news!

This morning I looked down at the hand in my lap and jumped because I didn't know whose it was.  They just don't look like my hands anymore.  I don't like that.  I really liked how my hands looked before.  They were one of my favorite features.  Plus I gesticulate with my hands so much when I talk and now that I can't move them I feel like I'm moving my arms around with dead fish flopping at the ends of my wrists.  Not what I'm going for.

Now What!?!

The hand is twitching now.  I'm on my second day of being on the full dose (3X a day) of Gabapentin.  I haven't had much relief of my nerve pain yet, but I just started the medicine so that doesn't surprise me.  It does make me feel loopy, dizzy, very talkative, and almost a little ADD.

But just today if I relax my hand, let it go limp, the fingers on my right hand start twitching.  There is a tingling in my arm and fingers first and then they start moving.  But I'm not moving them!  I don't like it!  The thumb is the most active one.  I haven't yet seen my left hand do it.  And recently I've taken to letting my hands go limp at rest a lot since it hurts so much to move them, so there's a lot of twitching going on.

I have no idea if this is just a new symptom or one of those bad side effects from the Gabapentin.  Being home alone with no one else to ask for advice, I called the pharmacy and asked him if finger twitching was a common or acceptable side effect for Gabapentin.  He told me to call my doctor right away and he'll probably want me taken off it.

Okay, so I called and left a message.  Hopefully he'll get back to me before the weekend?  UGH.  *twitch twitch*

EDIT:

I got a call back from Dr. K.  He told me to back off the Gabapentin to twice a day, just in case I am having some atypical reaction to it.  He has never heard of this type of side effect since Gabapentin in a nerve suppressant and if anything would be given to stop twitches like these.  He did say that these twitches could be caused by RSD or Scleroderma. 

If the twitching doesn't stop or gets worse at 2X a day, he wants me to stop all together and see if the twitching sticks around.

I told him when my tests were scheduled for and he was not happy about the long wait.  He said he was going to try to do something about that--to get my tests moved up because he doesn't want me waiting that long.  I'm supposed to hear back by the end of next week if they have rescheduled my tests.

He did give me the results to my xrays and bloodwork.  Everything was negative other than the ANA.  The ANA is still positive but not skyrocketing like the first time. I think he said it was the same as my second test.


The good news about my test results.

• Besides having an elevated ANA, my blood is totally honky dory.  I mean, they tested for a lot of stuff and the fact that only the ANA came up is pretty cool. 
• The normal chest xray means that I don't have horrifically obvious sclerosis in my lungs.  Hooray!
• The normal hand xray means that my finger is not broken and my bones are not deteriorating.  Hooray again!

The bad news about my test results.

• The bloodwork doesn't tell us anything new.  Although Dr. K did remind me that in order to have Scleroderma, you don't need to test positive for the Scl-70 antibody to have it.  You only need a positive ANA count which I do have.  I really wish he'd stop reminding me.
• The bad thing about having a normal hand xray is that if I had RSD for as long as I have, my bones should show mottling on an xray, and they don't.  Dr. K says this sort of lowers the possibility of Reflex Sympathetic Dystrophy.  Which is good only in the light that I don't want to have RSD, but I would happily take RSD over Scleroderma.

Time to wait some more.

We like the new doctor, just not his theory.

We saw Dr. K in Boston yesterday.  He was really great.  His office was running behind (by like an hour) but the nurses were really accommodating and kept promising that he was worth the wait.  When he finally showed up, I think they were right.  He stayed with us for over an hour.  He wanted to hear my story first, then gave me a full exam, then we talked for a long time about what he thought.

Here's what he thinks.

• He can understand why Dr. G would think that I have Reflex Sympathetic Dystrophy, but he is not convinced that RSD would explain all of my symptoms.
• Instead he brought Scleroderma back into the picture.  He is not convinced that he can rule out Scleroderma based on my symptoms. 
• Gosh, I wish he would rule it out.
• So we're down to RSD or Diffuse Scleroderma (possibly Sine Scleroderma?), OR BOTH.
• He ordered a battery of tests which he apologized for and stated that he doesn't often/like to do this.  Dude, order whatever tests you want--just find out what's wrong with me!
• After explaining that I have nothing that gives me any relief for my hands (unless I want to be passed out the pain pills I have for bad EDS pain) he prescribed me Gabapentin.  It's supposed to help with nerve pain.  I'm taking it for the first time tonight, and we'll see how I manage.  
• He was going to give me some med for high blood pressure to help with my Raynaud's but since I'm having less trouble right now (what with the 90ºF weather and all) and the fact that my bp is already low enough that I get dizzy and my vision goes white when I stand up, he decided not to.
• He wants me to be moving and stretching my hands as much as possible no matter if it's Sclero or RSD.  I'm not to push so far that I split my skin again, so pretty much keep doing what I'm doing.

As far as testing, he is redoing all the bloodwork (again).  This will be my 3rd ANA/RA factor/sed rate run around in 6 months.  There are other things on there that I'm pretty sure I haven't been tested for yet as well.  Or at least there better be.  They took 9 vials out of me around 2pm after having eaten half a bagel plain at 8am and nothing else. And I didn't even pass out.  I am blessed with good veins.

Funny story:  When the phlebotomist went to draw my blood he told me to, "Make a nice tight fist."
I just started laughing and told him, "I can't!  That's why I'm here!"  Well, I thought it was funny.

They're doing a urinalysis--and I must say I am a fucking champ for being able to pee in a cup with two bad hands.  I didn't think I was going to be able to do it.  They asked for the sample and of course I agreed.  It wasn't until I got into the bathroom and was struggling to get my hands to work well enough to get my pants down that I realized I was up Pee Creek without fingers.  I did it though, and I think I deserve a medal.

I also got hand xrays and a chest xray.

I have to go back (when they call me with the schedule) to get a pulmonary function test, a barium swallow, and a bone scan.  Dr. K also mentioned the possibility of a skin biopsy depending on how the other tests come back.

Then I get to go back after all this is done to have another chat with Dr. K to hopefully receive good news and the promise of a cure by eating frosted oatmeal cookies.

 So I am back to waiting.  Again. 

Oh, and when he waggled my joints, as all the docs do, Dr. K said that he had never seen anyone who had hip joints that moved like mine.  Oops!

Doctor #5 tomorrow

Heading into Boston tomorrow morning to see the new Rheumy.  Here's hoping all goes well and smoothly, and that we get some answers!

I certainly hope I do because I woke up this morning unable to move my left hand.  It was nearly as bad as my right.  UGH.  Fail.  I got movement back in my left hand by around 2 in the afternoon, and I could use my right hand by this evening.

But so much for getting used to losing things being par for the course.  Losing movement in my left hand really screwed me up.  I was upset and scared and super frustrated.  I still sort of am.  I'm really hoping and praying for answers tomorrow.

Bad Hand Photoshoot

M & I took a few photos of Bad Hand this morning.   This is average Bad Hand, not overly red, not overly blue/purple, and not as swollen as Balloon Hand, but you get the idea. 

Please keep in mind when comparing them that my left hand is also swollen compared to how my hands used to be 6 months ago.

When I wake up, I can barely bend my fingers at all.  This last one is about how much I can bend my fingers by around noon.  By then I can bend them a bit without the skin splitting, but I have no strength in those fingers, so I can't pick up or hold anything yet. 

Par

I haven't updated in a bit as there isn't much new to say.  My body has been par for the course.

My right hand is still swollen, painful, cold and most often unusable.

My left hand is starting to swell more.

I'm getting my normal dislocations/subluxations though nothing major or debilitating (for me that is, which I classify as completely bedridden for more than a few hours).

Spinal stenosis pain has been rearing its head a couple times a day.

My clumsiness from the EDS is only getting worse since I have to do the bulk of my maneuvers with my left (non-dominant) hand.  It seems like I drop/knock over everything I touch.


I feel like I should be more upset about how difficult so many everyday tasks are now with how my hand has been, or how many things I just have to say, "Nope, that's not something I can do right now," silly things like opening a door, or things I really love like knitting.  I have been learning a great deal of alternate ways accomplish some tasks with my one good hand, and I'm usually crazy-stubborn enough to do things this way instead of letting M do them for me at a fraction of the time and effort.

But the reality is that there is nothing I can do until I see this doctor.  I can't treat RSD (if I have it) on my own more than I am, and I'm not babying the hand anymore than I have to to keep the skin from splitting open.  I still feel like I should probably be less okay with this.  Either I'm getting good at lowering my standards or I'm tuned into my inner Zen.    Maybe getting used to losing things is just par for the course.

Red Right Hand

Pain level: 7
Dislocations so far today: left wrist
Subluxations so far today: Right shoulder a couple of times, my SI joint is threatening
Meds: allergy meds, OTC naproxen, 1/3 amitriptyline last night
Major complaint: My right hand is pretty much a painful, swollen, red/purple/blue useless lump.  Stenosis pain has been acting up.


Sorry about the post-gap.  Between internet issues and having only one hand that it doesn't hurt like hell to type with, I know I've been slacking.   Here is are my updates:

• I talked to Dr. E about what his advice for treatment in the meantime while I wait for my May 24th appointment.
• His response was that since Reflex Sympathetic Dystrophy (RSD) is such a difficult condition to treat, I really need to see this specialist about it and not him.  He told me to just hold on and wait for my appointment without treatment.
• This is not the news I wanted.  But I'm off the Ketoprofen and back to taking Aleve for daily pain and my EDS painkillers/sleep aids when the pain gets too bad.
• I got all the info requested to Social Security finally after a long round of Phone Tag (completely one-sided, so maybe that's just Phone Badgering) and I think I may be all set in that area for the time being.
• My right hand continues to get worse.  When it isn't red, it goes all purple or grey or blue.  Some days I get use of the hand by late in the evening.  Some days I don't.  
• I'm getting similar pain, at a much much lower level, in my left hand and wrist, and sometimes in my toes and ankles.
• The best way to describe the pain in my right hand is to imagine what it would be like if instead of finger-bones, you had thin glass rods in your fingers holding them straight--and when you bend your fingers they snap and shatter.  That's not an incentive to bend my fingers even when the swelling goes down enough that they can bend without splitting the skin. 
• I've learned how to sleep on my hand in such a way that prevents me from moving my fingers at all or else the pain wakes me up.
• When not bending, there is a throbbing dull pain in my hand/wrist joints which has been there since November.
•  Sometimes my right hand will get especially cold and grey/blue and start to tingle and burn like the pain of holding your hand in ice water for too long but worse.  Usually at the point, I get scared about cells dying from lack of blood so I run warm water over my hand.  From there I've got a 50/50 chance that the blood will come back into my hand and it will warm up without incident OR that the feeling of the blood coming back will make want to throw up because it hurts so bad.  The tingling intensifies and then BLAM! the pain hits and I'm doubled over hyperventilating and crying.  I can't move my hand at all and the nerves don't register anything touching it (dry towels etc) for at least a minute afterward.  The pain fades, the hand swells, and it turns bright red.  OW.  I'm not sure it's worth it to get the blood back into it.
• Popping my knuckles now nearly always hurts instead of helps.  So I wish my joints would stop feeling like they need to pop.  
• I tried to get on a cancellation list for my May 24th appointment so I could be seen earlier, but they don't have a cancellation list.  She did tell me that I could keep calling back to check to see if they had any openings.  Right now the earliest opening is in June.  That doesn't help.
•  My nails have gone all ridge-y and gross.
•  The lump on my middle finger is gone now.  There was a little dot where it used to be, but that's gone too now.
• I'm teaching myself to write left handed.  My attempts are pretty cute looking.

I did get to talk to someone online who has RSD and this is how it was explained to me:  when it shows up in a hand, normally there has been an injury to that shoulder.  Instead of the normal response to shoulder pain/injury, the central nervous system goes a little bonkers (sometimes through an immune response) and either the brain or spinal cord detects that the hand has been injured, even though it is not the case.  Nothing can convince the brain this isn't so.  The hand responds accordingly: it swells and is in pain.  When this continues for a long enough time, the brain concerned that the hand is in so much pain but will not heal (whose fault is that!?) it decides to amputate the hand by no longer sending blood to the limb.  Hence the coldness and the blue/grey color.  It's pissed at the hand so decides to shun it, basically.  

This causes more pain and the hand and body fight each other with nerve impulses 

The hand yells, Hey! I need more blood down here!  

And the brain responds, La la la la! I can't hear you!   

So basically it's reverse Phantom Limb Pain.  The human brain is such a messed up place.  Luckily, I find this super amusing.
 
Hand stiffness using middle finger as measure 
Time: 7:57 PM 
L  
Can touch forearm? nope but not as bad
Angle of extension of the center joint of finger: 35º
Angle of extension of the last joint of finger: 105º OW!
R
Can touch forearm? Not even funny how much this isn't a possibility
Angle of extension of the center joint of finger: 20º 
Angle of extension of the last joint of finger: 70º

Words of Comfort From My Doctor: "At least you're very pretty."

Pain level: 6
Dislocations so far today: none today--woohoo!
Subluxations so far today: Right shoulder a couple of times, right scapula once 
Meds: Ketoprofen-- 1 with breakfast for now
Major complaint: My right hand is pretty much a painful, swollen, useless lump until around 8PM when I can start to use it.


Awesome news!  The news is not that bad!  After expecting to be given a definite diagnosis of either Lupus or Scleroderma (with a tiny chance it was Rheumatoid Arthritis), we got to Tufts and were told that what's going on with my hands looks like it's not any of those!  Holy crap!

Okay to back up:  We picked up B on Wednesday and planned on taking the 6:15AM bus into Boston.  M and I slept like hell waiting for the alarm to go off.  I woke up around 3AM and stayed that way until we got up around 5AM.  We got to the bus station early (because I'm a paranoid idiot and was freaking out that we might miss the bus).  In fact we got there so early that the woman behind the counter gave us a weird look when we sat down in the lobby and said, "Um, the bus is loading."  It was going where we were, so we got on.  It was the 5:45 bus that happened to be a little late.  So we got to Tufts SUPER early--so early that when I went to register, the office wasn't even going to open for another 30 minutes!

So we waited, and I registered, and we went to Dr. G's office, and we waited, and B made us laugh and M held my hand and that really helped.  I got called in and I thought I was going to be sick with nerves, wondering which disease it was going to be--how M and I would cope.  

I saw the doctor's assistant first who told me to put on a gown.  She asked me to go over my symptoms which I did as well has gave her my 3 page print out that listed my previous doctors' contact info, symptom timeline, current symptoms, family history, and non-related health problems (like the EDS).  She have me an EXTREMELY thorough exam of my skin--the point where the gown was sort of a joke. 
At least I felt like I had gotten my point across when she asked, "Can you take your bra off for me?"
And I raised up my big red balloon hand and said, "Uh, no.  No, I can't."

She said that besides my swollen hand, I had perfect skin--which is nice to hear, but she seemed to confirm our fears and Dr. E's theory when after the exam she said, "Well, I would say that have some sort of Rheumatic Disease because your ANA is extremely high."  But said that Dr. G would be in shortly.  

That was a terrible wait.  Luckily the room was full of machines that shoot lasers and big WARNING signs so I spent some time offering to laser M if she'd like while I sat there naked with my gown-blanket.  

Dr. G finally came in and went straight for the hand, which I was thankful for.  She remarked how cold it was and that the temperature change started right at the wrist.  We went over all my symptoms again and then she said, "I don't think this is Scleroderma.  Nothing about this screams Scleroderma."  I must have looked shocked because she said, "That's a good thing!"  Oh I know!  That's a VERY good thing!  

She said, "I think this is Reflex Sympathetic Dystrophy," and I didn't know what the hell that was but I didn't care because it wasn't Lupus or Scleroderma and from what it sounded like I wasn't dying!  She explained it a little to me, mainly that it is from nerve damage in the shoulder and would effect my hand in exactly the way it is.  

M piped up, "That makes so much sense--You are always getting nerve pain in that arm."

Dr. G's face got that PING! expression and wanted to know how long I'd had nerve pain (since I was 17, so 6 years).  She asked if I had had trauma to that arm, and I explained that I subluxate that shoulder 4 to 5 times a day, and I subluxed it to show her--which completely grossed her out!  She wasn't even touching the shoulder when I did it, which is what I normally have people do when I'm trying to explain my screwed-up-ness.  But she had earlier asked me what things I could do that normal people can't and when I showed her my stiff, but still abnormally bendy left hand she tweaked out pretty bad yelling, "Oh! Don't!"

There was also a moment that I have had before with doctors when Dr. G stated that the complications of the EDS were really more of an annoyance than a hindrance to my daily life, right?  NO.  I explained to her my daily dislocations/subluxations, the falls, the wheelchair, the stenosis, the unexplainable spinal fusion--and she seemed to get it then, which I appreciated.  In fact, I don't think I've ever been openly pitied by a doctor more.  It wasn't a good feeling, but it was better than being told I was making it all up.  

She told me, "Oh, I'm so sorry!  That's just so terrible!  You have to deal with all that!  And now with the hand?  Oh!  That's horrible!  At least you're very pretty--God was good to you in that one regard."

I'm not sure how you respond to something like that.  I think I smiled and said thank you.  At least it was nice to see a doctor who openly genuinely cared about me.

Since RSD is not her area, Dr. G referred me to another Rheumy at Tufts and I made an appointment with him, but that's not until the end of May, so it's back to more waiting--but at least this time we don't think that it's something lethal!

After we got home, I did some looking up online about RSD and my symptoms do seem to match: Red/blue/purple swollen extremity, cold to touch, pain, shiny skin.  Again, this condition isn't curable, but it's at least a condition we can learn to live with, much like the EDS.

Dr G's advice in the meantime is to keep my right hand warm.  I called Dr. E (my first Rheumy) for his advice on treatment/medication since we're treating something else entirely now but we won't be in until Monday. 

PS:  My Disability claim has passed the first hurdle and I've been assigned a new case worker who sounds much nicer on the phone.  Now I just have to fill out my weight in forms.  Again.

Hand stiffness using middle finger has measure

Time: 10:38 PM

L

Can touch forearm? over an inch off

Angle of extension of the center joint of finger: 30º

Angle of extension of the last joint of finger: 100º OW!

R

Can touch forearm? Not even funny how much this isn't a possibility

Angle of extension of the center joint of finger: 20º

Angle of extension of the last joint of finger: 70º