what would you do

[tia77]

Started having weird symptoms in February just after seening my rhemy for joint pain and numbness in hands and general fatigue. Was having sever chest and back pain and arm and leg pain and muscle twitching along with numbness in hands and feet.  He thought I had fibroymyalgia.  A week after seening him i started with a blue flashing light in the outer corner of my eye.  Sometimes it would be brief other times it stayed off and on all day.  Went to eye doc that ordered a mri of brain.  Optic nerve looked good but there were some questionable findings on the mri.  Went to neuro and got an mri of neck and spin all clear of lessions.  Went to new rhemy that ordered more blood and urin and excet for a positive ANA and a homo of 1:640 seems to be all negative.  She wants a LP to rule out CNS Lupus.  I know those tests can come back negative even if you have stuff.  Here are all my symptoms some are old and most are new:
Joint pain (off and on for 7 years)
back pain (since early 20's)
EBS (since 25 years old)
Chest pain/ rib pain that wraps aroundto back/upper right belly pain
muscle pain in arms and legs withtwitching--pinching feeling once in a while in arms/shoting pain
numbness in hands,legs and feet
fatigue
headaches/ ringing in ears
sleeping problems/ night sweats (about 2 or3 year)
shaking or vibrating at night or napping (about 2 years)
blue flashing light in right eye with eye and orbit pain/eye twitching
dizziness occasionally
slight nausea
numbness and tingling in temple area/tip of nose tingling and itching
dry mouth and eyes/ hazyvision up topand bottom/ blurry/ glasses not as good--just got new glasses
hair loose (started last april 08)
right hand has tremor (about 3 years)
heart pvc's and pac's (about 8 years)
while turning head towrds right get flashing and streaking lights in eyes/like going topass out-only happened 3 times since July 08

I am at my wits end with all doctoring along with the pain.  My anxiety level is a 10 and it seems like rhemy and neuro think diffrently.  I think rhemy thinks it's ms and the neuro thinks it's lupus.  I really don't know what to do.  Any suggestions would be helpful at this point.  Some days the pain is so bad and others I can just go along and not be that bad.  I think the muscle pain in the arms and legs is the worst pain but what scares me is the thought of going blind with this blue flashing light.  Please anyone else having these symptoms.  I am 40 and have young children and just want an answer so I can be out of pain and start some kind of treatment to slow whatever is going on.  Help please.

[tia77]

How have you been doing?  How are your symptoms?

I went to Nuro guy today and nothing new to report other than he said call on Thursday and he will set up the lp at the hospital if I decide to go through with it.  It seems he isn't really into it but knows my rhemy wants it. Now I am in the position to have to decide what to do.  I really don't want to have it.  I'm sure nothing will come out of it and if it's negative what is the rhemy going to do next?  Treat me for something that isn't coming back?  I just don't know.  

What is your next step on how you are going to procede with your care?  

[tia77]

Yes I was diagnosted with WPW last march and had an ablation.  It failed becasue the bad signal is to close to the main artery of the heart.  She said the chances of going into tacc are small since I have a lazy bad lead.  If it was slick then it would be more worrisom to her.   Since then I have been having pvc's and pac's cardiologist says they are just annoying and not dangours.  That being said I take toprol when they get bad.  It seem to help somewhat.  That is when I noticed the hair loose last year and stopped taking it.  The heart doc says that the hair loose is not form it.  So now I take it only as needed.  Mostly around my cycle time.  About 4 months after the hair loose thing my thyroid was off.  I've been on synthroid for 10 years and never had to change.  So that medicne got upped to .75 a day.   Blood pressure is good.  It was high for the very first time last Friday's appointment but I was under alot of stress just finding out my dad has kidney cancer and my mother in law was getting admitted to the hospital with congestifve heart failure.  On top of that the lab messed up some of my blood work and I had to do some running.  That is the only time other than once in my 9th month of pregnacy with my second daughter.  I retook it on Saturday at the pharmcy and then on monday and it's been back to normal since.   Migranes since 25 years old not every week just occationaly.  Notice them more now and they are worse again with monthly cycle.  It seems to target the eye that has been giving me problems.  Usually my migranes where on the top of my head if you spit it down the midline of the head.   The new doctor ran all the lyme test stuff.  In fact I think I've had it run a few times.  Yes the joint thing threw me off also and that was my very first symptom with the numbness in the hands about 8 years or so ago.  I will give you what I have as far as the December blood work out of range stuff.  I don't have the new blood stuff but she said everything was negative.
Sed Rate by modified-22H
Red blood cell count=3.63L
Hematocrit=34.3L
Vitamin D, 25 OH, Total=18L
Anachoice (tm) screen= Positive
ANA Pattern=Homogeneous
Antinuclear Antibodies=1:640H
Rheumatoid factor=14H
Thats what I have that said out of range from December.  I am sorry to go on and on it's just frustrating and when you are in pain and walking around with tingeling and numbness it gets old.  I have anxiety and have been able to control it pretty ok till last March.  I decided right before all this stuff happened to go to therpy to help myself be able to cope better with the pvc's, now this.  I have taken xannax on occation when this blue flashing started.  It freeked me out.  The therpist wants me to take celexa but I am reluctent to start something new.  She said it will help with the every day stuff till all this is straightend out and I can deal better.  If I knew what I was dealing with I think I would feel a little more in control.  I guess I just have to decide what I want to do with the medicine. I'm not a big medicince taker but with all this I think once they figure it out I might have to take something to help.

How are you feeling?  It must be scary for you to have all these symptoms.  You are starting out in life and when "life" gets in the way it kind of throws you a curve ball.  I hope all your "people" can help with your diagnoses.  Get to the Neuro and see what he says.  I think sometime we have too much knowlege and we start trying to self diagnose and I think that may be bad.  If you are at a 10 on the anxiety scale you know as well as me it makes our symptoms worse.  When I do occationally take the xanax I notice alot of the symptoms dull or maybe I just don't care that they are there and ignore them.  Have a nice holiday weekend.  tia  

[Quixotic1]

Welcome,

an ANA titer of 1:640 is quite elevated and one that high is most likely indicative of an autimmune disease.  You said the "homo" was elevated.  Did you mean the ANA had a homogenous pattern or that your homocysteine was elevated?

You do have a huge list of symptoms and I gather some real cardiac disease with arrhythmias.  There are several things that you mention that make me think of things other than MS.  Specifically I think you should be checked out for Lyme disease.  The reasons are:

Joint Pain
Sensory paresthesias (numbness and tingling)
Vibrating
Sore throat
Night sweats

I looked back at some of your old posts and see that you have some tiny lesions on your brain MRI in the subcortical region.  Do you have any history of migraines or high blood pressure?

All in all this does not sound like MS to me, though in reality MS can have may appearances.  MS does not cause joint problems and arthritis, nor does it cause sore throat.

I would recommend that you post exactly this same post over on the Lyme Disease Forum and see what they say.  Did you ever get a western blot for Lyme?  I would strongly suggest that you do.  Lyme Disease is a huge mimic of MS and also of Lupus.  It is also potentially curable, so it would be a crime to miss it.

I'm not asking you to leave this forum, just that you investigate Lyme also.  I know that the Community Leader of the Lyme Forum spoke to you and also felt that your symptoms were suggestive of Lyme Disease.

I'm sure all of this is so very frustrating and scary for you.

Quix

[tia77]

I have all the same symptoms as you minus the rash.  The new rhemy ordered bloodwork even though I just had bloodwork with the old rhemy in December.  I got the blood work in March and she told me I was just getting over an active ebstein barr virus.  I also have a very low vitamin D level.  I just got off a month of prescribtion d and I'm waiting to see if it came up.  I don't know if the D and the EB virus have anything to do with what I am going through but the only thing I had before February was the very slight tremor, tingling in hands only, joint pain, and headaches which I probable didn't even tell him about because there just a part of my life.  Everything else started in early February.  I am trying to think back if I was sick and I know I didn't have a fever.  Maybe a sore throat but I get them alot.  I did feel verrry fatigued right before christmas and even canceled a work party I felt so bad I couldn't even emagine having to lift my arms to dry my hair.  I just thought it was too much work and shopping before the holiday.  I had mono as a kid and I just thought that virus is in your system afterwards.  I will try and keep track of my symptoms and when they are worse but in general I try and ignor them because the more I think about them the worse I feel.  One thing I do know is in the early afternoon my muscles always seem to be worse.  Like after lunch I try and lay down for 15-20 minutes and thats when I notice it.  Like I said don't know if because I am thinking about it.  I will go to the neuro on Tuesday but the rhemy called the house and left a message on Friday that she wants the lp.  I am so nerves about that.  I did have on when I was 15 and it wasn't a nice experence.  Keep me posted on your condition.  Keep studying I might need you in a few years.  Thanks for your thoughts

[scaredguy309]

did those symptoms come along just after some kind of infection? Our situation is similar except my rheumy doesn't seem to think i have lupus or ms. My ana came back neg yesterday but am just not convinced precisely for the same reason you stated

Negative does not mean no lupus. My symptoms started with lupus like symptoms; malar rash, muscle and joint pains and ended with ms like symptoms; muscle twitches, heat fatigue, eye pains and strange vision, headaches, sone tingling, muscle weakness, tremors. My anxiety is also at 10 plus am a med student so my rheumy thinks anxiety has a big role but to me its obviously not that. Yesterday also the other kids noticed my pupilary reflexes were off; my left reacting slower than my right. am convinced its ms and lupus or cns lupus but i've ot to see a neuro first. People do get both.

Have you tried monitoring the pattern of your symptoms? Like after a long hot bath do you feel tired or fatigued? Common place in MS.