I seem to be back in limbo land

[Phoenix177]

the last 5 days has been very hot outside 90+ and my sx have intensified.  I see a neuro this Thurs. for a nerve conductive test. I'll be binging my timeline and let him whats been going on. I saw the neuro yrs ago before I got my fibro dx. I had many blood test,MRIs, CT scans back then 7-9 yrs ago.
the following is from my timeline.
5/15/09 my right forearm is the same;numb spot and delayed reaction around it. The back of my right eyeball hurts and the sides hurt when it moves. Around 3pm, my right eye was jumping. This has happened 4 times today; one time I had double vision. The bottom of my left foot is either tingling or cramping off and on all day.

5/16/09 my R forearm has numbness and delayed reaction. When I press on the numb spot I feel tingling and pins and needles on top of my hand and in all my fingers. The back of my right eyeball feel sore, dull ache.

5/17/09 Last night when I got to go to the bathroom, my right eye was dim. My left eye was normal. I wasn’t laying on my right side. With only my right eye open, I barely could see anything mainly black. With only my left eye open, I could see the white bathroom walls and the bumps on it; I could see fine with the light from the TV. This morning, I awoke to both my feet and left calf cramping. My feet felt they were going to fold in on themselves and my calf felt it had a charley horse in the middle of the muscle or a very tight band. My right forearm still has numbness and delayed reaction. I have tingling in my right hand all day. I’ve been dizzy on and off all day; sometimes it’s light or severe and it comes in waves. Back of right eyeball hurts. Around 9:30pm, both my feet are tingling, pins of needles, going numb.

5/18/09 my right eyeball is sore on the back and the vision is dim and a little blurry. I have stabbing pain in the back of my right eyeball it’s been off and on, it started around 9am,and faded to sore achy pain around 6pm it remained when I went to bed. I had double vision. My R eye was light sensitive most of the day. My right forearm still has numbness or delayed. I have to push buttons very hard to get the desired effects. My R index finger tip is numb and cannot feel cold, tingling in my R hand and fingers. My R foot has tingling and my toes are numb all day.  Around 2pm, I got very dizzy that comes and goes in waves. My stomach is getting unsettled.

5/19/09 I woke up to my L calf very tight like there was a band around it. It was like that for 3 hours, then light tremors for ½ hour. It’s sore. My R forearm is the same; numbness, delayed reaction. My R eye is sore.


I have never had these sx with all known conditions I have. Does the eye problem sound like ON? waht about the other stuff? my right forearm (underside) is the only constant thing going on. it wakes up maybe once in  4-6 weeks then its  extremely itchy or feels likes its on fire with shocking pain that goes to my thumb and spine

this from the last time it woke up:
5/10/09 my right forearm was numb until 9pm when it got extremely itchy for 3 ½ hours. Both my legs became itchy also, just less intense. When I touch my arm, it still doesn’t feel normal, my finger feels like a dagger and the pain is delayed, I feel a shocking pain from my forearm to right thumb. When I tap my thumb and index fingers together, I feel something weird in my spine it make me jerk and/or sway, my stomach becomes unsettled. My legs got very weak and I got lightheaded when I went outside and started to get a little over heated.

5/11/09 I was dizzy when I woke up. It didn’t matter if I was laying down, sitting, or standing, I was dizzy/spinning. It lasted for several hours straight then was off and on during the day. My tongue has a very light tingling on top. My right forearm feels likes its on fire with shocking pain that goes to my thumb and spine.  I can’t stretch out my right arm without tightness in my forearm muscles and shocking pain. Around 1:30pm my right forearm started to go numb again unless I stretch out or rotated my arm. My fingers, both hands, have pins and needles. My right eye hurts on the back side. My right eyeball started jumping around 4:45pm for at least 15 seconds, I had double vision.

this is driving me nuts. Last time, it took me almost 4 yrs to get out of limbo land with my last dx but I seem to be back :(  

[Phoenix177]

Its been a few days since the B12 shot and I still have tingling and other sensory problems on my right side, and balance problems. How long would it take to start noticing a difference? I was in the low range of normal, but if B12 was the problem wouldn't my entire body be affected, not just my right side?

[Phoenix177]

Update

Today, I got the results for blood tests. my thyroid,cholesterol (good and bad) everything all are normal.  I'm in the normal range but the low end for vit D3 and B12. my PCP gave me a B12 shot and told me to increase my vit D3 and I'll see him in 3 weeks. the pee test was normal also, I thought that one would of been positive for UTI since I've been having bladder issues. In 3 months, I get more blood drawn. I hope its not 6 vials like last time. I have deep veins that are hard to find and the only one they can find is crocked and isn't willing to give much blood. I got poked 3 times (1 in each arm and my hand)

[Phoenix177]

I took the eye test again today. During the test on my L eye, my R eye was doing its jumping/twitching thing it does. my R eye was a little better (test results), but the eye doc wants to talk with a neurologist.  my eye doc thinks what ever is going on with my eye plus the sx from my timeline are neurological. he'll call me sometime this week.

I see my PCP at the end of this month for a physical- full work up blood tests the whole nine yards.

is it too premature to ask for a MRI? I had some done 8-9 yrs ago on my brain/spine and the were clean then

[Phoenix177]

nothing conclusive. he wants me to redo the test since if he refers me they want me to retake it. but there is something differently wrong with my R eye. He told its not glaucoma. I turn 32 tomorrow, so I think I'm a little young for that.

I brought my time line with me. my right eye has been getting worse since mid-March. there were some incidents before then but I down played it. I did tell him about a very bad flu I had in Dec. it laid me out for 2 to 2 1/2 weeks. after I recovered I was fine then around mid-January something happened (its in an above post)

[Lulu54]

did the optometrist tell you the results of the test from today?

hang in there,
Lulu

[Phoenix177]

I called the Optometrist to make an appointment and told them my sx. they wanted me down there soon as possible today. I just got back from the doc.

I don't remember the name of the test, but it was to test how well the nerves in the back of my eyes are working. I looked into a machine and saw a white back ground with a small black rectangle. little lines(ranging very light to dark) would flicker. I'd click a button any time I saw it. the test was about 5 minutes per eye.

I saw the test results. it showed the eye with a grid. some squares were white, gray or black. my right eye didn't do well. it had a lot of black and gray. my left eye was mainly white.

I'm going back on Monday to retake the test.

[Phoenix177]

Update

I saw my PC today. I went to see him for my R eye today. I, also, got the result for my R forearm nerves; they passed. I brought my timeline (I know it was long,8 pages)  I told him a lot has happened since I last saw him and I update it once a day. he made a copy. I have a physical at the end of this month, so he can read it in more detail and I know he's going to tell me that I'm a master of understatement.
He's sending me to an Optometrist.

here's my eye sx only, I do have other sx. it mainly my R eye, but my left is started to act up (2 1/2 weeks ago) .

my R eye sx are mostly on and off. it gets worse with heat or I'm tired. it is either achy on the sides when it moves and on the back or sharp stabbing pain on the back side this started 2 months ago.

In Jan. '09 my R eye side vision went hazy then black for 45 minute. when I saw my doc, he didn't find anything of interest

here's the on and off sx:

one eye is too dim or too bright

R eye jumps

see more the normal amount of spots (bright white,colors or black), wiggle lines, flash of light, or something dark moving on the corner of my R eye.

hazy vision, object moving or splits ( this has happend once since Jan)

[Phoenix177]

I just had the nerve conduction velocity test in my right arm. looks normal. I'll find out more from my PC

[Phoenix177]

I had to wait for insurance to say OK I could have that test. my PC sent in the request in march.

[Phoenix177]

'Do you watch TV in a recliner, or with your right arm on the arm of the couch?  Are you right handed and work a lot on a computer, where your elbow is in contact with the desk, or arm of the chair? ' Fluffysmom

Yes, I sit in a recliner however I'm usually centered or lean to the left. When I use the computer, I use a small cushion under my R arm. my elbows are never on my desk. I'm mainly right handed with writing, mainly left handed when I'm doing something else. I can write left hand.

'Have you seen a neurologist?  Do you have a good primary care doctor that you have a good relationship with?'Fluffysmom

I'm seeing a neurologist this Thurs for a nerve conduction velocity test.my PC told me  I saw this neuro yrs ago before my dx of fibro. my doc and I thought what you mentioned above. but with all the new sx, I'm not sure now.  I agree it is possible that it is a separate issue from the other things. Luckily I have a great PC doc. he listens to me. even if the tests are neg, he keeps plugging away until there's an answer. the nurse practitioner before him gave up after a year and told me 'it's in your head'. my doc knows I won't mention every little ache and pain, but if it's bugging me he'll know. I do have an appointment with him tail end of next month for a physical- full work up blood tests the whole nine yards. Maybe I should call him to see if it should be bumped up or make an another appointment.

[Fluffysmom]

Hey, a fellow Oregonian!  Hi!

First, let me say how sorry i am about this very stressful time.  I hope you have a good support system to help you through it, and that you have developed healthy coping skills.

I have a guess about your forearm pain, numbness, tingling and shocks.  It is possible that it is a separate issue from the other things that you describe.

Do you watch TV in a recliner, or with your right arm on the arm of the couch?  Are you right handed and work a lot on a computer, where your elbow is in contact with the desk, or arm of the chair?

I ask this because I have experience a mild ulnar neuropathy, with symptoms similar to yours, though not as intense.  Mine was from scarring on the ulnar nerve in my right elbow, caused by a viral and secondary infection.

My dad had a severe ulnar neuropathy after driving all the way across the U.S. with his left arm on the arm-rest; the last two fingers of his hand and part way up the underside of his forearm went totally numb.  Seems like he totally pinched off that ulnar nerve.

So, it could be that your symptoms are from some kind of ulnar nerve impingement.  The ulnar nerve goes from your spine through your shoulder, down to your elbow on the outside, and down your forearm and the outside of your hand.

Since you have right rotator cuff tendonitis (I do, too), it could be that your nerve is being irritated at that level. If the whole foream is irritated, both sides of the hand, then the medial nerve could also be affected.

Have you seen a neurologist?  Do you have a good primary care doctor that you have a good relationship with?

You could get a referral to a neurologist for a nerve conduction velocity test in your right arm, to see if the nerve signals are getting messed up somewhere.

That might be one simple step to start trying to figure out what's going on with you.

Take good care of yourself, OK?

Kathy

[Phoenix177]

the last 2 years, mainly during the summer I noticed heat seems to make what ever this is worse; I feel dizzy/spinning/spacey. I remember feeling this the last 2 summer ago but it wasn’t as severe; once I cooled down it when away. I blamed the fibro even though I thought is was weird it was reacting to heat. its been cold sensitive. once in a couple of months my left eye vision would be dim. I brushed it off; I thought maybe it was because I was laying on my left side.

Last summer I felt a little worse then the summer before. I stayed inside with the AC on all summer when it was hot outside. the eye problem was the same it would come and go. no big deal I thought. any pain, muscle pain/spasms, electric type shock I'd blame on fibro or RLS. one time my ribs felt as if someone was sitting on me. it was hard the breathe. I thought maybe I bruised a rib again or the fibro is flaring

Now I'm wondering was this the onset of what ever this that I missed.

[Phoenix177]

I'm not dx'd with MS. I've been dx'd with Plantar Fasciitis (right foot since childhood), fibromyaglia, IBS, PTSD, Restless Leg Syndrome, and right rotator cuff tendonitis (all of these came together almost 9 yrs ago). Jan. '09, I was DX with Osteoarthritis and bursitis in left knee.
tomorrow is a very painful anniversary of an assault from my now ex-huband. he also stalked me for 5 yrs after. the flashbacks are very bad this time of year, I can't stop them from playing. believe me I've tried. I can explain later when I regain control again. I'm basically in shut down mode, so I haven't talked to my doc.


these sx started with a bang In January 2009, I was sitting in my recliner resting my knee when I suddenly felt tingling sensation from my right cheek to just above my right eye. Then I started seeing spots and kind of like a red-green film with bright white spots along the edge in my right eye vision and it seemed to get darker with my right eye open. My left eye is normal. If I close my right eye, the light level returns to normal. I started to get dizzy, like spinning. My heart was racing and had a cold sweat. Then my side vision for only my right eye went hazy then black for about 45 minutes. Luckily everything went back to normal. I am not sure if this incident is related to the following.

February ‘09, I was watching TV when I brushed my right hand against my blue jeans and it felt like a very soft blanket. It took me a little time to relies I didn’t have a soft blanket on, and ½ of my ring finger and pinky were numb mixed with pins and needles along the wrist, forearm, and upper arm (underside). It comes and goes. Went to my doc on 3/11/09 I told him what was going on. I was thinking pitched nerve like CTS or something like it. My doc told my to pay attention to my arm and see what sets it off, when I go to bed keep my arms straight, and I’ll see you in 2 weeks.

On 3/19, I had stinging pain in my right forearm around the bone and pins and needles on the skin layer. My skin on my right arm is very itchy around my right wrist, elbow, forearm, and hand. If I moved my arm, the muscles felt as if they were being shocked and torn.  

On 3/20, the pins and needles spread to the whole hand. ½ of my wrist and my forearm went numb and the other half felt like there was a dagger twisting along with electric shocks. My right hand seems to have some weakness and have a hard time holding things (cup, pen, etc.).  I cannot straighten or rotate my right arm without sharp, stinging; tearing pain with an electric shock (it reminds me of grabbing an electric fence). This electric pulse goes up my arm into my spine, muscle spasm follows this, and this pulse usually goes down to my legs.

and it been going on since

I hope this doesn't confuse anyone

[Lulu54]

Are you also dx'd with MS?  I'm confused, but that's the normal these days for me.

I'm sorry the heat has hit you so hard - have you been in touch with the doctor?

feel better,
Lulu