Ophthalmlogist Report and Update

[LilMinnie]

Happy Weekend :)

Brief synopsis :

Symptoms this spring. Saw two neurologists. Had brain and cervical MRIs.  Had EMG and another test they do during the same session and carpal tunnel was ruled out. There was an abnormal needle result that suggested something neurological is going on.  Two lesions in brain, none in cervical spine. Vision went bad suddenly, so I told neurologist. He said for me to go see an Ophthalmologist.

Was at Ophthalmologist office for four and a half hours and she found I have refractive diplopia and convergence insufficiency X (T). I had asked for a copy of my visit report and it said DDx MS, MG, and for my neurologist to evaluate me for something (that part was cut off of my copy).

Meanwhile, just a couple days prior, I saw my neurologist and he suggested that I have an LP.  I told him I would think about it because the thought of a needle in my spine terrifies me.

Finally decided to go ahead and have LP. Was surprised I hadn't heard from neuro though because Ophthalmologist had requested diagnostic results and follow up. Stopped by neurologist office after physical therapy and they said they never got the Ophthalmologist report.

Called Ophthalmologist office and asked them to please fax my report and asked what was on the bottom of the report that had been cut off. It said that she wants my neurologist to evaluate me for Multiple Sclerosis and Graves Disease. So, I guess she saw something in my eyes and since the report is written in doctorese, I really don't know what. She had told me about the Convergence Insufficiency and refractive diplopia and prescribed glasses. I did finally get my glasses and I see clearer, but I also see double and up close vision is bad.

So, that's where I am. Graves Disease sounds pretty scary,. My Thyroid tests were normal, but maybe there are other tests that have to be done to rule it out.

Any of you know anything about Graves Disease?

Thank you for taking the time to read.

Hugs,
Minnie  

[LilMinnie]

Hi, All, I hope you are doing well and have a relaxing weekend full of good food, close family and friends, and football! Well, that's a great weekend for me, anyway! ;-)

I had received a call from my Neurologist's office and they wanted to see me this week. So I went Thursday.

He told me what the Ophthalmologist report said about evaluating me for MS and MG. He kind of breezed past the MG part and said he wants me to have the lumbar puncture. I get the impression he isn't thinking MG at all.

So, at this point they are submitting it for insurance approval.

I told him I only want to have it done once, and that I had heard of people having the LP done but no blood drawn at the same time, which would make the test useless. I also asked it be done with fluoroscopy. He typed that information in the orders and showed me.

I am thankful that he at least seems to believe me. I am afraid of it being positive, yet I also fear it being negative because then what? I do have test results that show something neurological is going on, just not enough yet for any type of diagnosis.

I am trying so hard to eat right, take vitamins and supplements, and exercise as I can.  Right now, my vision, fatigue, and alien left arm are my worst symptoms. I also walk like a robot and stumble over my own two feet.

Well, I guess that sums it up! I guess I am creeping toward answers. Better forward than back (which I am kind of afraid the LP will do).

I thank you all for reading,

Hugs,
Minnie :)

[LilMinnie]

Haha, you're right... What textbook version?! You guys are awesome! Thanks for giving me a chuckle :)

[Maracamama]

Ooh "textbook" version sounds good to me too.  Much better than the" wait and see" version (especially in Canada where is seems there is so much time waiting between tests).

Hopefully you will have your answer soon and not need the LP.

Laura

[SarahL2491]

ha ha
there is no "textbook" version of MS
don't we wish....

well, maybe is going to go with what the Optho says....we all await the news!

[LilMinnie]

Haha, wouldn't you know I'd finally get the nerve to do it and then be told that he'd decided to wait on the Ophthalmologist report ;-) Not sure why the LP would be contingent upon that, or why he would even suggest that I have it done.

A negative would just throw a monkey wrench into it, unless he was suggesting I have it done in order to rule out MS. Not that I want it by any means, yet he told me that I present for MS but sometimes the body doesn't give enough information right away. Now I don't know what to think. Maybe he was just humoring me.

Bleh, if it is what I have I wish I had the "textbook" version so I could just know and then deal with it.

Thank you very much for your reassurance about the LP and for taking the time to write me.

Hugs,
Minnie

[SarahL2491]

The LP isn't bad, I thought the lidocaine to numb it was the worst.  I didn't even feel mine, just the pressure after they put the bandage on it......drink tons of caffeine afterwards.........and throw in some headache meds just in case......I didn't even have a headache..

Mine was negative.about 10% of us don't have O bands........
so at least you are making progress.......keep us posted on what goes on, we all learn from each other

[LilMinnie]

Hi everyone! I hope you are having a relaxing Saturday :)

My neurologist's office called yesterday and said they received the report from my Opthalmologist's office. It is flagged for review by the doctor and they will be contacting me next week once he reviews it. It does state that I need to be evaluated by the neurologist for Multiple Sclerosis and Myasthenia Gravis.

I am still a little confused about why my neurologist's notes said that I hold off on the LP until they received the results of my Ophthalmologist visit, yet during the visit he suggested the LP. Since I was undecided we scheduled a six month follow up and he told me to consider the LP and contact his office if I changed my mind about it in the meantime. Hmmm.

I so appreciate your taking the time to read and I'm grateful of any advice, experiences, information you can offer.

Hugs to you all,
Minnie :)

[LilMinnie]

I so appreciate your all writing me back.

Tina, your information about Graves Disease is very helpful. Even if it doesn't apply to me, it may end up helping someone. You are also very welcome. :) I too am thankful for this site and a place to post where people will understand what you're going through.

You, know, Rico, this may sound like a big DUH on my part, yet I didn't think that the person may have misread the report! I'm going to arrange to go by there and get another copy and check it this time before I leave.

I again thank you for reading and responding and hope you have a relaxing, blessed Sunday.

Hugs,
Minnie

[Ricobord]

I am so sorry you're still waiting for answers.

You said,
-------
Was at Ophthalmologist office for four and a half hours and she found I have refractive diplopia and convergence insufficiency X (T). I had asked for a copy of my visit report and it said DDx MS, MG, and for my neurologist to evaluate me for something (that part was cut off of my copy).
-------

When I saw "DDx MS, MG",  I read it as "differential diagnosis Multiple Sclerosis, Myasthenia Gravis."

Could the person you spoke with at the opthamologist's office have mistaken "Gravis" for "Graves?"

[tina21067]

Hi Minnie,

First off, thank you for writing me yesterday and offering your words of comfort.  I haven't gotten a chance to write back until tonight.  It is hearing from others such as yourself that makes this time much more tolerable, so thanks again.

I wanted to write you regarding your concern for Graves Disease.  Although I do not have it, my sister does.  She has been battling it for about 5 or 6 years now.  Honestly, she has had eye issues, but none of them were what you have been dealing with.  She has had iritis, viruses that effect her eyes and many issues with her level of energy etc.  The scariest thing if I remember correctly, was her heart.  She had a crazy fast heartbeat which didn't allow her to sleep.  When the doctor saw her thyroid numbers in addition to her heartrate, they called her into the office that day as they were afraid she would go into cardiac arrest.  She was put on beta blockers that day.

She was also on Synthroid for about a year to see if that alone would control her thyroid, but that was unsuccessful.  She had to have her thyroid killed off with a radium capsule and will be on Synthroid for the rest of her life.  Actually, I don't understand why they are even thinking Graves in your case because your thyroid was normal, correct?  Also, she hasn't had any numbness or tingling or other types of symptoms that are MS like.

I don't know if this helps you, but I figured I would let you know.  Not firsthand experience, but I am very familiar with what she has gone thru.

[Dagun]

Minnie, I´m sorry that you don´t have a diagnoses yet but it seems like you´re getting there soon. I don´t know much about Graves, so I´m of no help.

But I´m at a similar age as you and my symptoms started June 2010 and still no diagnoses. Often it seems to be more difficult to figure things out when we are not at the typical age to get ms. For example the spot on my brain is thought to be because of age. So now I´m just trying to stay calm until this revels it self. What ever it is :)

I hope for the best for you, good luck!
Dagun

[LilMinnie]

Hi, thank you for writing back :) I also appreciate your reassurance about the LP. I had both my children naturally because I was so scared of having a needle in my spine. May sound crazy, but true!

I did a bit of reading and I'm with you, I don't think Graves Disease fits either.

When I went by my neurologist's office I told them that I would like to go ahead and do the LP, but the nurse I talked to said there was a note in my record to wait until my results from the Ophthalmologist came.

So, I guess I will make sure my neurologist received this information and then see what is recommended.

Thank you again for taking the time to read and reply.

Minnie :)

[SeranishRyen]

Lumber Punctures aren't that bad; the hardest part is where they numb you up; it's like lidocaine, stings a bit. The needle is a small gauge, and I barely felt it. Really, all you may feel is a bit of pressure; just keep talking to the doc and nurses doing the procedure; communication is key.

This actually sounds more along the lines of Multiple Sclerosis to me; you may want to see a retinal specialist to double check that there is no inflammatory cells in your optic nerve (Optic Neuritis). One of the first signs of MS is visual, a swift bout of blurriness (not just fog, but actual blur).

Stay on all your doctors, and make sure to sign any release forms they might need in order to share your information. As I said, Communication is Key.

Good luck.