Neuro-opthomologist update

[michael1028]

Good morning to everyone. I thought I would update you on my double vision problem. I can no longer see single much at all. After taking my meds I have sometime during the day where anything within about 3-6 feet is single vision. Everything else is double. The nausa and headaches are getting a bit worse as this goes too.  After speaking with the doctor yesterday he is treating this more like MG. We have dropped the prednisone to 50 mg per day. To that we have added 30 mg 4 times per dayof pyridostigmine. Too early to report how well it is working. Stay tuned.
  I have also contacted my MS doc to tell him about the increase in my numbness and soreness all over. My body seems very angry with me. I have not felt very good for the last month it seems. The MS doc would not do anything without seeing what the neuro-optha would do first. I understand talking with each other and communication but this is a little much. My frustration is starting to get the best of me. I see myself being on the phone chasing doctors again today.
  Thank you for reading and your interest. i will update you all with more later.
Hang in there everyone. good thoughts to you all.
Mike  

[michael1028]

Good evening ma'am, I hope you are well. Sorry this has taken so long to get back to you. I did not get to the doc until monday afternoon , and yesterday I was so sore I went straight to bed.
  Well the news from the doc was less than good. He has decided to take me off all the meds the pyridostigmineimmediately and take the steroids down 10mg every four days until I am off. he wants to measure my eyes again....???? I am just sick. On the questions that you asked of me I made mention to each one. All of the vision tests were fine the VEP was slightly off but "no glaring problems" he seems so certain of no MS because of the clear MRI. According to him the everything looks great on the MRI no marks. When I asked him if the nerves are getting disrupted for eye to brain like arm to brain, hands, feet, etc. he said the numbness and the nerve issues " are what they are" great statement there. So here I sit with nothing better. I am a bit frustrated however still trying to remain positive. Thanks for listening. I appreciate it very much.
Bless you,
Mike      

[michael1028]

Thank you guys for the nice words I really appreciate it very much. As I have said many times before this fourm is the greatest support, next to family, one could find. Thanks again so much.
Mike  

[Deb61]

Thanks for the information.  I don't have eye pain or color changes, but I certainly have lots of blurry vision and my vision darkens when going outside in the heat.  My MRI shows lesions in other areas, but not the brain stem.  However, my neuro suspects that I may have them there.  He told me that the brain stem lesions are harder to see on the MRI.  

Thanks,
Deb

[doublevision1]

Double vision in MS is typically related to brain stem involvement, ie: damage to the cranial nerves that innervate the eye muscles.  

I could be wrong, but I don't believe ON causes double vision; I believe ON is more related to eye pain and blurry vision.  

Do you know if any lesions have been detected in your brain stem area that might be responsible for your double vision?

db

[Deb61]

I do not know how your opthamologist can be so confident that it isn't MS.  I am suspisious of this.  I've had double vision for a long time, and when my optic nerves were looked at, nothing was found--they looked healthy and pink.  Plus, my MRI's didn't show lesions on the optic nerves.  However, the double vision has persisted.  I was diagnosed with MS in Jan./Feb. this year.  

My sister, who was diagnosed a couple of years ago, still has problems with double vision and no evidence of ON were found, either from MRI's.

A lady I work with, who was diagnosed a month ago with MS, is nearly blind from ON.  Lesions were not found on her optic nerves from just looking at them or on her MRI.  What helped with her diagnosis was the VEP (I've not had one--maybe that would help find my vision problems).  

Plus, the fine HOT weather hasn't been helping matters.  It's worse than usual.  I can barely see at night because my vision is also very blurred.  

Best wishes, Mike.  My prayers are that answers come your way, soon.

Deb

[sllowe]

Hi Mike,

I wanted you to know that I'm thinking of you and hope they get to the bottom of this.  I wish I had something to offer, but can and will say prayers.


Shelly

[doublevision1]

As you know, my GP and first neuro thought I had MG when my double vision initially developed, despite all of my other symptoms, mainly sensory, that were more indicative of MS and not at all indicative of MG.  Kind of like your situation.  GP and neuro said 'low risk for MS' because previous MRI of brain and neck, a year prior, showed no lesions.  I was doubtful of MG from the start because it does not present with the numbness, 'hug', etc. I was experiencing.  Luckily for me, a new MRI was done promptly, and confirmed it was in fact MS, as I suspected all along.

You say it was your ophtha who says 'no MS' with such certainty, after viewing your MRI?  Perhaps remind him that symptoms can present before lesions are visible.  Many of us here have had that exact experience.  

If in fact your double vision is due to 'purely ocular MG' (as per your ophtha), then the blood test may not be useful.  I have read that the test does not necessarily detect MG in the solely ocular form of the disease.  I'm not sure where that leaves you, diagnostically speaking.

BTW, I can't recall if you've ever said, but does your double vision resolve when you tilt your head to one side or the other, or up or down?Mine goes away when I tilt my head to the left, as my double vision is now solely on left lateral gaze.  I am curious about yours, as you say that you have double vision in all directions of gaze?

Mike, I really empathize with the frustration of dealing with double vision.  I was fortunate in that at least I got my DX soon after onset of my vision problems.  I am really sorry that it is taking so long for the underlying cause to be determined, and sincerely hope they figure things out very soon.  Let us know how your conversation with your doc goes.

db

[michael1028]

I just wanted to update you about my phone call to the doc on friday. I did not get to speak with the doctor. I spoke with the nurse instead, he increased the pyridostigmine to 60mg 4 times a day. as of this monday morning I see no differnt. We are suppose to speak today. I will try to update you this evening.
  Thanks again for your interest and feedback.
Mike

[michael1028]

Good Morning. Hope you had a restful evening. I have printed you questions out and will address each one. here goes.
Cervical Lesion - The surgeon seems to think it is scar from the binding of the cord before the surgery. It showed some growth, very, very small, between the first and second surgery. It has remained the same in size since. They continue just watch it carefully.
MG vs MS - I have questioned this MG dx from the start. I think that no clear test so far has come back to say MG. the optha is calling it that. The one thing that is not consistant with MG is my vision looking Left, center, or right all show double vision. This seemed to puzzle him. As for the meds. The first day of steroids in 12-14 hours I was seeing fine. It lasted two days. Aftrer those two days the effects of the meds were not the same. Even the prisms on my lens did not help. The meds did not last near as long, by the 10th day on them the effect was only 6 hours at most. When the pyridostigmine started I have not seen any change. Doc stated that this dose is small and after a couple of days we may have to alter the dose. As I sit here, I took my 50mg of steroid and 30mg of pyridostigmine at 5:30am. As I look at my screen, images are closer to together, but still very much double. The time is 6:14am. Interesting enough the optha says no MS. He looked at the MRI and made that call. I will in fact ask him the reason for his certainty.
  Other Tests - i would need to review my doctor notes to see all the tests that optha conducted. I can say this, It was by and far in the 47 years I have been here the most extensive exam to my eyes I have ever had. My notes are at my office. I keep them handy for the phone calls to the doc. All my testing has been done on 1.5 machines. i will check on the 3T view.
  I want to thank you for taking the time to hear my story. it means a lot to me. I have made several notes in my Journel for my friday phone call. THANK YOU SO MUCH !!!! i plan to detail you a few more answers to your questions. I also am printing out the things you referenced so that I can read them. I may have some other questions after reading those.
  Once again Quix, thank you ! I am sending prayers your way and hope things are going well for you.
Bless You Ma'am,
Mike          

[Quixotic1]

Hmmm....you're way outa my league her, but, I guess that has never stopped me from musing before.  From my readings MS and MG have never been seen to be associated statistically.  There is the rare patient who has had both, but that's it.  

Double vision is a very, very common problem in MS.  And I would be suspicious of a cervical lesion also.  Have you had a second opinion from a neurosurgeon to see if that kind of lesion can result from the surgery you had?

I think the other neuro is making a sound statement that this is MS, but "unpresented on MRI."  I would qualify that phrase, because you are clearly "presenting with whatever it is," look at your symptoms!  Have you read my blurb in the Health Pages on "How you can Have MS wit a Negative MRI?"  I'm always pleased when a neuro acknowledges that the symptoms can present ahead of MRI findings and isn't too lazy to keep looking.

And, your other symptoms sound way more like MS than MG to me, but my experience with MG is nil (excepting a patient from my internship 30 years ago).  I know nothing about the ocular-only type, but from what I understand (in "regular MG")  the response to the pyridostigmine should be immediate.  I mean immediate!  As in the response whould be seen with the first dose.  Any med you have to take every 4 to 6 hours lasts only briefly in your system.  That means it has to work fast.  I would think you should see noticeable improvement on the first day.  And then  worsening in the morning after the long period without it.

Things to bring up with your docs, maybe.

So, if you don't have an immediate improvement to the pyridostigmine, ask why not.  What does that mean, especially in light of the negative in-office test?

Does the neuro-ophtho have any ideas about the rest of the stuff you are suffering from?  Does he believe that you might also have MS?  IF so, what is it that leads him to think this is MG, when MS would account for it?  Double vision is common in MS.  Just ask us!

What MRI strength was the spinal imaging done on?  If it was a 1.5T or less, would your neuro consider repeating the test on a 3T?  I wrote a little blurb on the "Difference between the Old MRI machines and the New ones."  It explains a little about why the improved resolution is especially helpful in visualizing lesions in the cord.  I suggest this, because more lesions might pop up if this is MS.  I went from zero lesions on the 1.5T to six lesions on the 3T.

Have you had a VEP (sorry if you already told us)?  Or SSEPs?  Those would help point towards MS if they were positive.  And the LP?  (Teflon Brain here)
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Finally, you do know about now being steroid dependent and not stopping the steroid abruptly or drastically lowering the dose?  You should be carrying a Med Alert card and/or pendant or bracelet that says "Steroid Dependent."  Also if you get sick or injured you will need additional doses of steroid.  If you get weak all over and have nausea and vomiting, headache, abdominal or back pain,  or fainting it is an EMERGENCY and you should call 911.  They should know you are steroid dependent.

BTW- I get painful and sore all over after the first day of IV steroids, too.  It makes no sense.

I'll be looking for your answer.

Quix

[michael1028]

I would enjoy nothing more than answering questions from a doctor than asking them all myself LOL! The MS is still on the table. I have all the symptoms but no lesions. The last MRI on a t1.5 came back clear. I have a small 1.5 cm spot in my cord that they are watching carefully. They are unsure if it is a scar from the disk surgery or just what it is. Doc seems to think I am carrying an "unpresented" case of MS. My MS doc refered me to the neuro-optha in May. MS doc felt that the double vision and the MS things were unrelated. In my opinion they are all nerve disorders. That makes them related in my book. I feel I am just waiting on somethong else to go wrong sometimes. Neuro -optha is calling this MG and feels it is purely ocular. He is  treating me with prednisone 50mg/day and pyridostigmine. 30mg every 4 hours The in-office test came back negative. That is a serum they IV into you and watch your reaction ?? that name escapes me at this time. I have not undergone the blood test as of yet. it is quite expensive I understand. Steroids worked great for two days and have never been that good since. My body does not like them. I seem to hurt all over.
As for muscle fatigue, not really. My eye on the right side does hurt often. It is very light sensitive. I am back to wearing a patch. The prisms on my lenses are no longer effective either.  I have more headaches than I use to. Repetitive muscle use brings on a LOT of numbness.  Fatigue not so much. I have quit playing golf because of the numbness in my hands. Since I started lyrica the MS doc cut my nerotin to 900 mg/day from 3900mg/day. I notice the numbness in my hands, arms, feet, and  legs. really bad the last couple of weeks. Some days are a struggle to get out of bed.  
  Quix, I value your opinion VERY much. If I should be asking something in your opinion please let me know. I have a conference call with both docs on Friday morning . I hope this catches you up let me know if there are any other questions I can shed light on.
Your Friend,
Mike              

[Quixotic1]

I missed a whole bunch of stuff here.  I don't understand why they can't tell the difference between MS and Myasthenia Gravis.

Was your antibody (acetylcholine receptor antibodies) test positive for MG?  Do you have rapid fatigueability with repetitive muscle use?  Did you have a positive challenge to the Tensilon?  Do your muscles react typically (for MG) on the EMG?

Or does the neuro-ophthalmolgist think this is a purely ocular form of MG?

Also, I have read that there can be a neuropathy in MG, but I haven't seen a lot on it.

Can you answer any of this stuff?  'Cause I'm baffled.

Quix

[6-paq]

Ackk.....  I empathize with your frustration!!   Do these docs forget that YOU are going through this while they wait to confer??

So, is your doc now leaning toward MG vs MS?  Don't know much about MG, but I think there is a blood test for it?  

I too sure hope and pray that your vision stabilizes soon.  

Take care and thanks for the update, Pat :)

[wonko]

I can relate to the frustration!  

Sometimes we can tell ourselves, "oh, I can deal with this, it will get better soon" but, (atleast for me) patience can dry up!  I think it was Quix in a post who mentioned that while we are waiting for doctors to help us, our lives are placed on hold.  I don't recall your full story but I know you're patience is being consumed too.  So, just saying that I'm with you on that!  I don't count it as frustration getting the best of you, I count it as just plain knowing when enough is enough and expecting better care!

Hope your vision stabilzes, sorry if it's in another post, but could you share how long it took for your vision to get where it is?  I've had mild double vision for 1 week to get into a neuro optha, and would like to know more about ur experience.

Thanks!