Need some input from all of you!

[Mel222]

I was dx'd with MS in 2005 by Dr. Vandenoort - leading MS Neurologist - confirmed by Dr. A. Pittluck...in the course of 7 yrs getting dx'd three other MD's claimed all I had was migraines (no headaches ever experienced ) MRI confirmed 8+ lesions synonomous with MS. Both Dr. Vandenoort and Dr. Pittluck sadly passed away...Today my vision in right eye completely crashed (like pixels out of order, loss of vision) eyelid dropped, arm went into major pain. Eye lasted over 2+ hours and then came back into focus...arm still killing me; weak and tingling. Went to opthamologist who told me didn't think ON but confirmed eye drop - went to new neurologist who told me he thought I had a migraine (no headache) - told me ON isn't short lived and lasts days not transient - wanted me to take Beta Blockers indefinitely for migraine condition ....he started to challenge my MS DX claiming MS rarely includes pain. I am so angry, frustrated and confused. No steroid treatment, no dx other than possible migraine!!! Has anyone had eye issues related to MS that lasted a few hours? If so, what did you do? I assume Solumedrol or Oral steriods?

I miss my favorite Dr's ...... angry about disease and doctors who don't understand or dx MS using the usual fallback of migraine rather than deal with the reality of MS. Thank you for letting me rant and any feedback is so appreciated...

[Redwings]

Hi Mel:
Your ophthalmologist and neurologist were correct about ON: ON doesn't come on suddenly and it isn't transient. It comes on over hours to days (not minutes) and lasts days to weeks (not minutes to hours). The resultant vision loss can last weeks to months to forever. Based on your description, and the opinions of your doctors who actually saw you, what you had was not ON. Steroid treatment would not be appropriate. Not appropriate not only because it wasn't ON, but also because steroids aren't given for a problem that has already gone away. It would be like taking an aspirin today for a headache that went away yesterday, only worse.

The eyelid droop is a separate problem (the optic nerve doesn't control the eyelid). But since it also resolved, there's also no indication for steroid treatment.

There are at least a couple of possibilities for what might have caused the transient eye issues. If you've had ON and a droopy eyelid before, and if the conditions were right, the episode might have been a pseudoexacerbation. Pseudoflares can come on suddenly and resolve in a couple of hours. Pseudoflares aren't treated with steroids because there's no inflammation to treat. But if you haven't had those issues before -- that is, no demyelinating events that damaged the nerves and made those areas susceptible to a pseudoflare -- it becomes less likely that that was a pseudoflare. That doesn't mean it wasn't, just less likely.

Another possibility is a migraine. Being partly vascular, migraines can come on very quickly and clear up in minutes to hours. They can be extremely painful or entirely painless. Vascular events are "wired" differently than strictly neurological events, so they can affect areas that don't seem to be connected. And vascular events can change in literally a heartbeat. Migraine is a plausible explanation if you haven't had previous ON or a drooping eyelid that would have made those areas susceptible to a pseudoflare. In addition, migraine is more prevalent in people with MS than in the general population.

It's understandable that when something scary happens, you want something done about it. But based on what you've told us, what you think happened isn't what happened. And what you were thinking was going to be done isn't appropriate. What you're thinking is "the reality of MS" that your doctors just refuse to see, may not be that at all.

The reality is that not everything is MS. You made some assumptions, but the evidence you've given us doesn't support those assumptions. A vision problem isn't always ON just because you have MS. The treatment that you're assuming you would get because you have MS isn't always what's called for. And even things that are MS don't always play out the way you expect them to. This sounds like one of those times.

None of this is what you wanted to hear, but it does explain why your doctors didn't do what you were expecting them to. You're entitled to be angry about the disease, but I hope you're a bit less confused about it now.

[Jules A]

In short, I have had diplopia that lasted only about 30 minutes after waking even from an afternoon nap.

I didn't treat it because I was undiagnosed at the time but would request an oral course of steroids if it happens in the future. More so just to ease my mind because imo it would be an indication of inflammation and I'm terrified of the damage inflammation can cause.

[Scooter24]

Redwings- Please don't be offended by my question but I am curious to know if you have medical training as your answers amaze me as to the medical terminology etc that you post. I looked at your profile but didn't see any information there, I'm not questioning your posts or knowledge just curious.

[Mel222]

Much appreciated!

Redwings - your answer, pragmatic as it was - is much appreciated. It gives me more information to ask better questions which was what I was hoping for here. I remain frustrated however as starting over with a new neurologist means starting at the beginning and going through the gauntlet again....I value this website immensely as questions can be asked and answered. Thank you for the thorough answer.

[Toomnyhats]

....he started to challenge my MS DX claiming MS rarely includes pain.

While this thankfully isn't one of my sx, I believe there are several people here who would challenge this opinion. My understanding is this used to be the line of thought until someone wised up & realized nerve damage = pain.

I recommend calling the MS Society for a neuro recommendation in your area.

[heliotrope]

Redwings - your answer, pragmatic as it was - is much appreciated. It gives me more information to ask better questions which was what I was hoping for here. I remain frustrated however as starting over with a new neurologist means starting at the beginning and going through the gauntlet again....I value this website immensely as questions can be asked and answered. Thank you for the thorough answer.

I recently had a similar experience with a neuro-opth (my neurologist firmly believes I have a diagnosis, this doctor thought he was a qualified neurologist...). Someone pointed out to me that he hadn't read my case history so he didn't have a clue. I suspect your neurologist may not have read your case history either...

[twisterred]

... MS DX claiming MS rarely includes pain...

MS is quite painful for me.

Over 10 years ago, the medical community didn't think MS was painful.
This site lists symptoms. Pain is included in a few.
http://www.mult-sclerosis.org/mssymptoms.html

[Spydre]

I respectfully disagree with your doc that said there is no pain associated with MS. I'm generally in some sort of pain most of the week - it took me time to learn to distinguish what was MS pain and what was fibromyalgia, but my fibro seems to have backed off while my MS pain has ramped up. Add any kind of physical activity in, and my pain skyrockets (and that's while I'm in a remission phase of my MS - that doesn't even count the pain I get when I'm in an exacerbation).

[sevilla]

Today my vision in right eye completely crashed (like pixels out of order, loss of vision) eyelid dropped, arm went into major pain. Eye lasted over 2+ hours and then came back into focus...arm still killing me; weak and tingling. Went to opthamologist who told me didn't think ON but confirmed eye drop - went to new neurologist who told me he thought I had a migraine (no headache) :

I have been the lucky sufferer of chronic migraines since I was 11. I have had all of your symptoms with the exception of the numbness of the arms. I got tingly on my tongue and lips instead. I slurred like I was seriously drunk. Then my entire right side when numb, I thought I was having a stroke. They told me it was MS, I fought them tooth and nail saying no its just migraines. BTW migraines also cause lesions, which until MY lesions showed up on the MRI I had no idea about. So I had to get more testing done to see if my migraines had gotten worse OR if it was MS.

It sounds like to me you were having a migraine. They don't all cause a headache but to cause symptoms in the rest of your body.

[sloth]

I have been the lucky sufferer of chronic migraines since I was 11. I have had all of your symptoms with the exception of the numbness of the arms. I got tingly on my tongue and lips instead. I slurred like I was seriously drunk. Then my entire right side when numb, I thought I was having a stroke. They told me it was MS, I fought them tooth and nail saying no its just migraines. BTW migraines also cause lesions, which until MY lesions showed up on the MRI I had no idea about. So I had to get more testing done to see if my migraines had gotten worse OR if it was MS.

It sounds like to me you were having a migraine. They don't all cause a headache but to cause symptoms in the rest of your body.

Sevilla: I was wondering have you found if migraine lesions appear diff' then ms ones or diff' areas?

I def' have migraine syndrome from terrible hormonal issues, as seasonique bc's has taken most of it away.

If anyting affects the pills then migraines return, not always w/ pain sometimes w/ full right sided neuro misery long before pain oh and motion sickness etc..

Im just curious how they sort out the diff's? Is migraine syndrome heat sensitive even w/ lack of migraine sxs?

Thanks

PS; I was frustrated by migraines being a poss dx since at first I had no pain w/thm just neuro sxs and lesions, but my sister had a BAM migraine and it looked like she had a stroke for days.

Fortunatly the bam artery showed up on mri as enlarged and went back to normal after a course of topomax.

Im more accepting of migraine thing now.

[sevilla]

Sevilla: I was wondering have you found if migraine lesions appear diff' then ms ones or diff' areas?

I def' have migraine syndrome from terrible hormonal issues, as seasonique bc's has taken most of it away.

If anyting affects the pills then migraines return, not always w/ pain sometimes w/ full right sided neuro misery long before pain oh and motion sickness etc..

Im just curious how they sort out the diff's? Is migraine syndrome heat sensitive even w/ lack of migraine sxs?

Thanks

PS; I was frustrated by migraines being a poss dx since at first I had no pain w/thm just neuro sxs and lesions, but my sister had a BAM migraine and it looked like she had a stroke for days.

Fortunatly the bam artery showed up on mri as enlarged and went back to normal after a course of topomax.

Im more accepting of migraine thing now.

Sloth:

Unfortantely, the drs said they can appear in the same spots Which makes it more difficult to diagnose. They may make you keep a diary of your symptoms so they can track what is a migraine symptoms vs a MS symptom. That is what I did. Different triggers for each. Some of them overlap.

Also keep a food diary because Migraines have food triggers and environmental triggers. try to figure out what caused the migraine.



Migraines can cause a slight heat sensitivity because blood is pooling in your head. I had a slight heat sensitity before this but it was only if I walked into a sauna. Found that out the hard way. LOL. I was 14 on a family vacation and we walked into a sauna, boom passed right out. I never did that again! Now I have a major heat sensistity

[babygirlamy]

I too have one of those neurologist that says pain isn't associated with MS...