Evoked Potential , EEG and Western Blot- Lyme vs MS

[drsdonthelp]

Hi everyone, I have been through quite a bit this past month. I also have spent alittle time on the Lyme forum after taking the advice from all of you. I discussed with my fam. doc of my concerns from having cat scratch fever when I was 17. I told her how I checked with some friends that I met through a therapy group and I asked her if I could get a Western Blot test done.
I told her that I am extremely concerned because if this is Lyme, I want my children tested as well, because of it possibly passing to them during pregnancy. I am soooo freaked by this, but I am determined to find the cause of my ongoing problems and to stop anything bad happening to my children.

I had my bloodwork done today for the lyme test. I go on May 5th for the Evoked Potential Test and EEG.
Maybe I shold have an answer one way or another.

If my lyme test is negative,,,, what next??????
I don't want to keep hitting brick walls, but my health is declining. I am sooo tired everyday, the slightest movement with any kind of cleaning I try to do, my left hand tremor gets worse until I am resting or relaxing.

I just had my mom bring me to get my prism for my glasses, and guess what??? It doesn't help a bit! I am so frustrated, because I was excited about seeing out of both eyes, but I sit here with the patch on once again.

Two days ago, I went to get up from my kitchen table to get a pencil my dogs were chewing on the floor and WHAMMO!! I smashed my foot right into the kitchen island and dropped right to the floor. VERY painful, but of course I laughed as I sat on the floor saying "Ow Ow Ow" Lol Still having a hard time walking because of my foot hurting now, I cant see because this prism doesn't work, I am tired of bumping into tables and walls and missing steps.

Ok, I am done rambling, I went way off with this, LOL I guess I needed to get that off my chest.

Thanks everyone for listening,
Hugs,
Pam

[drsdonthelp]

Lol. I don't even  know what the heck I wrote,,,,"thawon't"???? What is that..?? Lo

[drsdonthelp]

Lyme test is negative.... so are all infectious disease and inflammatory diseases negative. Like I said before.... back to square one..
My fam. doc. wants my neuros to look at my graves disease history, since that is what has caused my body to go haywire.

May 5th can't get here fast enough, after those tests, I am done........ I Thawon't give up, I am going to rest.... too tired for all of this bologna!!!!!!!!

Thank you all for the advice and support,
Pam

[drsdonthelp]

Bob, as always,,, you give such great explanations.

thanks sooo much,
Pam

[COBOB]

Good question.  I'm not sure if they can always tell.  Optic Neuritis with demyelination of the optic nerve is a myelin injury.  The VEP waveform look pretty normal, but slow.  There are other optic nerve injuries that effect the axons as well as myelin (infarcts, etc.) that mess up the wave form.  That is one of the keys about the VEP and Optic Neuritis from demyelination - Well Preserved Waveform with Latency.

I'd guess that the ophthalmopathy associated with Grave's eye disease would mess with the waveform more than a demyelinating Optic Neuritis.  You may need to ask your ON specialist, since it is a guess on my part.  I know more about the machine, theory and the test than the clinical interpretation of the results.

Bob

[drsdonthelp]

Thanks Shell and Bob.

This last surgery, they put orbital rim implants in both eye sockets along with correcting a deviated septum because I started to have a sinking appearance of the eyes, worse on the right.
After the swelling started to go away, my right eye appeared to drift outward. The drs. thought that when the swelling came down some more, my eye would turn in straight and the double vision would go away. Well, my right eye still looks like quazzie moto, and wanders outward still.
I keep trying to wear the prism, but it doesn't work at all.. I have a piece of black electric tape covering one of my lenses on my glasses. REAL ATTRACTIVE!! LOL

I've had questions like<" did you lose an eye, or did the lens break on your glasses?"

My appt. for the EVP / VEP/ EEG test is on May 5th in Rochester. I can't wait to get this over with. I am so exhausted!!!!!

Oh yeah, and I see an awesome Ophthalmologist in Syracuse. He does all those tests on me. I get pictures of optic nerve evrytime I go to see him. He is very kind, helpful, and knows his stuff. I feel very lucky to have him.
I have many eye drs. ... regular opthamologist, optic nerve specialist, strabismus dr., and eye reconstruction surgeon. ( two other 2nd opinion doc.s on the side).

It seems like my neuros. are the drs( that) dont help!! LOL

Bob, one more question??????   If I have optic nerve damage caused from Graves eye disease how do they know the difference between optic neuropathy and optic nueritis and what its caused from to say if it is ms related or not??? I am sorry that I cannot make that sound more clear.

Talk to ya soon,
Pam

[COBOB]

I'd say to get the EVP(VEP) done.  The problem with prisms is they can work for optical convergence issues where the eyes do not track correctly.  They will do nothing other than drive you nuts if the problem is related to CN2 latency.  

My left eye has a normal P100 my right eye has a P100 of about 127mS.  Things look smaller, skinnier and farther away when compared to my left eye.  Sometimes, when I'm looking at the computer or a book, I have a second image that shows up lower and vertically beneath the main image and is about 25-30% the transparency of the main image. The doc says it is the "echo" of the image getting to my brain "slower" than the left eye image.  

Prisms work if you have two eyes that look in different directions.  They are an optical device.  When they added prisms to the phoropter (the machine where they do "which is better, A or B?" I went from 2 images to 4 images.  Prisms just made the problem twice as bad for me.

So I'd say it depends where you double vision comes from.  In my case it seems to be neurological, so bending light will not help.  I your eye is pointed the wrong way (CN3, CN4, CN6 issue) then prisms might work great.

I looked for a "difficult vision ophthalmologist" and called to talk about my vision issues first.  By the way, this Ophthalmologist had visual fields, retinal camera, OCT and VEP in his practice.  A good indication that he deals with major vision problems.  I'd say shop around.

Bob

[sllowe]

Dang, Pam. I wish the prisms helped. Sounds like the doc is willing to dig further in that regard.

I wish there were a magic work that could be spoken, or typed that would make all ok w/not knowing. But, knowing that's not possible, I'll just say, we're here w/your while you wait. If it's negative, we'll go w/you through your next steps. It will not be the culprit, but  one less thing on the list of possibilities.

I've heard it can take a little time for the prisms to help if even a hair. Any chance of keep trying w/them?

(((hugs))
shell

[drsdonthelp]

Hey girl, I've been missing you! How are you feeling? Thanks for responding.

I hope I get an answer, SOMETHING has to show. This is not all in my head, and I am tired of feeling like sheiiiitttt!! LOL

Take Care,
Pam

[figuerpa]

Pam,

I am sorry you have been through so much. I am hoping that the EVP or the Lyme test will show something for you so you can finally have an answer to what is going on. It sure does s u c k to not know what is going on and being in limbo is stressful so it doesn't help with any situation.

I can't comment on the double vision because I don't deal with that thank goodness. I do hope that you can get some kind of relief soon, this has been going on for too long so some answers are sure to come your way sooner than later.

Wishing you well,
Paula

[COBOB]

Mine is like a 30% vertical ghost so it is irritating, but not that bad.

Bob

[drsdonthelp]

Hi Bob,

When I saw my eye muscle surgeon Dr. , he said he definately wants me to get the Evoked Potential Test done before he makes any decision on another eye muscle surgery. He feels that if my double vision is caused by something else, then I am having eye muscle surgery  for no reason. I asked him to prescribe a prism for me because I am sick of wearing an eye patch.
It is so discouraging that it doesn't help. I see double still, the images are closer together but its now looking like ghost images. I am closing one eye as I type this.

How do you deal with your double vision? Do you wear an eye patch? When I am tired, my double vision gets worse. My problems are so confusing because of my eye disease, eye surgeries, and if it is neurological, it goes unnoticed. I hope to get some answers in the next month.

I cannot get my hopes up, because we all know how that goes. LOL

Hugs,
Pam

[COBOB]

Sorry to hear about the prism not working.   My ophthalmologist recommended that I not try a prism since my double vision seems to change depending how tired I am or if I look at high contrast letters.  He felt prisms would only work it the double vision stayed very stable all the time.

Bob