Bny806,

I too have muscle weakness, spasms, eye twitching, blurred/dbl vision, numbess/tingling, etc etc. So much that they've done tons of bloodwork trying to figure out if I had something else wrong with me too LOL. I'm even sensitive to touch sometimes to the point it hurts if someone pats me on the back. I have bilateral papilledema as well.

My eyes always hurt more, especially on the side where my head hurts (right side) the right eye always has a harder time seeing/focusing/etc than my left eye. I have most of the same symptoms you do. I don't know if this helps or not but you aren't alone :-) hang in there :-)

Hi BNY,

I can really relate to the symptoms you describe in your post for 2 reasons.

One, because they are symptoms I get when my PTC flares up, and two, because they are some of the symptoms I get a few days before It is time for me to get my next IVIG infusion.

Obviously I can't DX you, but your case is complicated-autoimmune disorder, and possible PTC...the symptoms can mirror each other and your bloodwork will always be a bit Skewed now due to the IVIG and having donor plasma in your system.

It sounds like you don't feel like you have been given any definitive answers, treatment plan, or diagnosis plans from your Dr's.

If that's the case, maybe think about a 2nd opinion? I do not know where you live, but I bet there are enough people here living around the country who have scoped out the good Dr's on their PTC journeys.

You probably know this, but a good PTC work up includes a regular eye exam with dilation, a visual field test, a color chart test sometimes, getting your eye pressure checked and finally a lumabr puncture.

(someone chime in if I missed anything!)

Keep us posted on your symptoms, Dr's, progress, etc....
LuLu

It sounds like you have Intracranial hypertension also known as pseudotumor cerebri. Papilledema is a diagnostic tool for this when other causes have been ruled out. Have you had a spinal tap? Once this is investigated and it is confirmed that this is the problem (I am only speculating at this point), then you can be started on proper therapy to lower the intracranial pressure (meds or in my case a shunt) then the headaches will go away and the neurological symptoms should resolve. Dr. Rigamonte at John's Hopkins has a pseudotumor cerebri program that helped me in this facet of my life. If you don't have a trusted doctor I recommend that one based on personal experience!! Good luck!

I forgot to add that prior to my shunt surgery I had all the symptoms you described that all resolved once they got my pressure down to normal.

Now I am battling a new disease that doesn't have anything to do with IIH causing me problems. The high intracranial pressure problem for me is well controlled at this time.

wow, thank yall all so VERY VERY much.. first of all, i must say I am completely shocked that yall had/have similar symptoms as I do... i have felt SOOO lost/confused for so long about all of this- the past 2 years since this fun journey began.. when I saw the neuroopthamology note, I honestly thought he must have charted on the wrong patient.. as he didn't specifically mention that to me.. I saw him 2 times and his 2nd note also commented on it as well.. his clinic was SOOOO crowded and busy, as I guess those guys are few and far between..

Lulu- what is your diagnoses that you get IVIG for?

itsmeamm - I have that same sensitivity issue too!! In fact, I finally made it to get a haircut this week (low on my priority list).. and she started massaging my scalp - which is usually my favorite part, and I couldn't stand it.... and I can't stand tight sleeves on my arms, and on and on!

beautifulb- wow, i just can't believe that you had all the same symptoms as well, and they were resolved with the shunt- as much as i know thats a major surgery, i'd do it in a heartbeat if it could potentially "fix" me!!!!

I have had 2 lumbar punctures, however neither of them did they test my opening pressure! I am going to try to get into my regular opthalmologists office on Monday and have him take a look, as I feel like my vision is worsening at a faster rate as these headaches are also worsening... The neuroopthamology visits take a full day, and aren't covered by insurance for some reason. If he sees papilledema then I'll ask the neuro to do a lumbar puncture with opening pressure..

As far as a 2nd opinion goes.. i've seen about 8/9 neuros, some rheumys and the opth.. none of them could figure me out for certain.. most said I sound like CIDP or MG.. but at the time, i never thought much about my headaches.. I also just told them my vision is "off".. sometimes a little double, but just off.. I dont' feel like where i'm at, that i'm really listened to... however they give me IVIG, which helps a lot of my symptoms, and i'm terrified to loose that..

a few more questions, if yall don't mind!?
Do yalls eyes hurt when you move them? that's another thing I have told the dr's from day one- when I move my eyes (especially my more affected eye and side of my head that hurts).. they hurt..

another question about the vision.. when I focus on something up close and then try to look away, or simply focus on something not at that same distance my vision is strange and takes a bit to adapt to the new distance.. does this happen with yall??
i have felt so alone in all of this - so it's really comforting to have yall to relate to a little!!

Hey Bny,

First I have to say I love your use of the word 'yall' I lived in TX for many years but had to move back east for personal reasons and I so miss TX and hearing that!

OK, I receive IVIG for CVID (Common Variable Immune Disorder) I also have the AutoImmune Disorder Sjogren's, and Fibromyalgia. I have also tested positive for the RH factor but do not have Rheumatoid Arthritis at this time.

As I read through a couple of these posts and I hear about some folks sensitivities to touch it sounds an awful lot like Fibromyalgia.

I just re-read your post and want to let you know, that bending over, coughing and sneezing made me feel like my head was going to explode when my PTC is active...I actually became very adept at picking things up off the floor with my toes...my ex called me Monkey Feet all the time, but I call it resourceful! Anything to avoid the pain!

When you can, get some rest, close your eyes and try heat or cooling pads, which ever sound appealing to you over your forehead and eyes.

My pharmacist said it is OK to alternate between Tylenol and Advil-2 tylenol, then 4 hours later 2 Advil, this dosing always helped me a lot. But, PLEASE call your pharmacist, as I do not know your medical history and find out if this is safe for you to try.

Feel Better, LuLu

Thanks so much Lulu... Yes Motrin and tylenol help soooo much with these headaches.. and the eye pain.. I actually made it through the entire day yesterday without having to take either!!!! I have stomach issues, so I try to avoid motrin/nsaids.. but man, i just couldn't function , so had to use it several times daily for the past 3 weeks. ughh.. I also take plaquenil and lyrica.. I have pretty good joint aches (small joints mostly- wrists - OUCH, ankles, elbows and knees).
I am going to try and get into the opthamologists office tomorrow, we'll see what he says... I wish I could go back to the neuroopthamologist, as he was very very good..

haha - I love Texas, that is where I am from.. i forget how much I probably use "yall".. I moved away for a short time, and missed it so much I came running back.. but gotta say the hot hot summers dont' help my condition much, as heat is awful for me!

Interesting about the bending over thing.. I also use my toes as much as I can.. when I bend over it feels like my brain is going to come out through my eyes and ears.. and it's like it makes me feel cross eyed!!! This happen to you? My vision gets all sorts of weird.. Thanks again so much for your advice/insight! I really really appreciate it!

I am on Plaquenil also...took a good 12 weeks to kick on, but it sure helps me now. I also have a ton of GI issues as you mentioned in a previous post.
Don't know what part of Texas you lived in but in Dallas there is a Neuro-Optho named Dr. John McHenry who specialize in PTC...absolutely no bedside manner but knows PTC inside and out, and is dedicated to patient care. He usually has a 3 month waiting list, but if you can get your optho to write a referral saying your case seems urgent he will take you earlier.

Just for fun, my good friend in TX sent me this song the other day when I was talking about how much I wanted to move back...hope it gives you a laugh...think you could use one in the middle of all this!

http://www.youtube.com/watch?v=nMhaehb5AnE

Keep us posted on what your optho has to say :)
LuLu

Thanks Lulu- I will have to look at that video later, as my internet is acting up right now and it wont play!! I sure do love Texas though - there's no place like it! :)

Funny you mention dr McHenry - that's who I saw a year ago, saw him 2 times and man that's a full day!! I was there for HOUUURS.. but he is very very intelligent and brought a lot to the table, and mentioned several things we hadn't even thought about in my diffrential diagnosis with all my weird symptoms!! He is the one who on both visits on his notes state I have papilledema.. he told me I have optic atrophy/past optic neuritis on the left, but never mentioned the papilledema... which is strange.. so for the longest time, i assumed it was just an accidental charting error!?!

I would have gone back to mchenry, but insurance isn't covering him since he is out of network ahhhhh.. so I have a huge bill for them, and dno't care to add more to that!

I saw the regular opth today - he recommended I go back to the neuroopth though - ha.. but he didn't see any papilledema on his exam and everything else looked fairly ok.. though my vision was bad!!! he says it sounds like optic neuritis.. and with my symptoms if it were PTC he would expect to be able to see it on his exam.. humm.. the mystery continues I guess.. still not sure what the neuro opth saw a year ago- that's another mystery!! Uggggghh

Hey Bny,

I'm glad you got to see your opthoologist, and also glad that no swollen optic nerves were present at this time. That is a good sign. McHenery might have noticed papiledema but chalked it up to one of your other visual issues? He is to thorough I think to not order further testing (at least he used to be).
You could call and get a copy of your medical records from McHenry's office and bring them to another Neuro-Optho , but if I remember McHenry is the Only Neuro-optho in all of North TX. He used to work at UTSW so I don't know if they hired a new Neuro Optho after he left to start his own practice.

Just the same, I know how frustrating and tiring this whole process is, and it is a bit more complicated when you add the IVIG, auto immune stuff, etc...it gets hard to tease out the separate issues.

Do you ever get any relief with your visual problems after an Infusion?