Looking for more suggestions

[Luongo]

I'll try and recap quickly...

I had a spot of numbness on one of my toes in May 2010 that lasted a couple weeks. Neuro hooked me up to electrodes to test the nerves and said it looked fine.

In December the same spot on the other toe went numb. It was gone when I woke up the next morning, but weird visions problems came up alongside twitchy muscles. I presumed MS. Brain MRI without contrast (no idea what strength) came back clean. Annoyed with no conclusions, I went back in February 2011 for a C-Spine MRI, also came back clean. Got an x-ray on the spine which showed slight arthritis, but nothing crazy. Went to a neuro-opthamologist who said my optic nerve looks fine and healthy. Saw a 2nd neuro who thinks I'm crazy. Had a follow-up with neuro-optha who ordered blood tests.... came back with high ACE levels. Did another to double check... and still had high ACE levels. Possible sarcoidosis. I got a chest x-ray today to confirm, but my symptoms don't really fit sarcoidosis.

Any ideas? Other than thrusting myself at my neuro and demanding an LP? Aside from my vision causing annoyances when I have to read, I'm relatively fine. I just hate the idea of sitting around waiting for some catastrophic health failure to occur before I get any action here.

[Redwings]

I presumed MS.

Frankly, Luongo, that may be the source of many of your frustrations. From your posts, it seems that you've made a lot of assumptions without facts to support them or without sufficient understanding of the facts you do have.

From your posts, you don't have any evidence of MS, and an LP is a nonspecific test that won't give you the answers you think it will. It certainly won't foretell a "catastrophic health failure." If you'd done your homework correctly, you would have already found that out.

You have a far greater chance of slipping in the shower, hitting your head and dying from a subdural hematoma. Where is your concern about that? You have a far greater chance of being severely injured or killed in a car wreck. MS causes relatively few deaths, yet tens of thousands of people die from car wrecks every year. Where is your concern about that?

If you do your research properly about elevated ACE (have you?) you'll see that sarcoidosis is only one of the possibilities. There are many avenues to go down with ACE, and MS isn't one of them. This is the first solid lead you've had but it sounds like you're dismissing it because "I assumed MS" and you won't let go of it in spite of a complete lack of evidence.

Any ideas? Yes.

1) Pursue the lead you have, which is ACE.
2) Explore, perhaps with the help of a mental health professional, why the assumption of MS has so much hold over you so you can find out how to let go of it and pursue more realistic options. I don't agree with your second neuro who thinks you're crazy, but your posts contain evidence that your line of thinking has gone significantly off-track and needs to be redirected.
3) Consult an optometrist -- the functional vision specialist -- to quantify and qualify the visual annoyances that occur when you read and assess for ways to work around them. There are many visual skills dysfunctions that have absolutely nothing to do with systemic disease -- and some that do -- that can be helped with proper treatment. In other words, put your attention where the true problems are.

Good luck, Luongo. I hope you can uncover some real answers soon.

[Shashi]

It doesn't really sound like you have very many symptoms of MS, if all you've got is a bit of toe numbness and visual problems when you read. Not sure of your age, but there are various problems that can occur that can affect reading vision such as presbyopia, hyperopia, dry eyes, cataracts, etc. Even staring at a computer too long can cause vision problems. You may just need reading glasses or bifocals.

There's a saying in medicine, when you hear hoof beats, think horses, not zebras. Right now, you're focusing on the most unlikely of diagnoses, when there are many other things that make more sense. As Redwings said, pursue the ACE results, but don't make too much out of it. I've had various elevated or low test results through the years that could indicate many possible serious conditions, but that doesn't mean I have them. Sometimes an isolated test here or there might yield odd results, but if there's nothing else going on to validate that line of reasoning, then it's usually nothing. Here's a page that lists what the ACE test is and what results could mean (not that it does mean that you have any of these things.)

If the only problems you're having are a few numb toes and some vision problems when reading, stop focusing on those things. You'll probably find they go away when you're not thinking about them so much! Be thankful you don't have worse things going on. like muscle spasms, nerve pain, extreme fatigue, cognitive problems, muscle weakness, etc. And get out there and enjoy life! (Which every one of us should do, no matter how we feel. We only get one time around - we need to make this life a good one!)

Good luck and hugs,

Lisa

[Shashi]

Oh, it would probably have helped if I had including the link about the ACE levels that I mentioned, wouldn't it? (My memory isn't so good right now. My daughter invited me to dinner tonight a few days ago, and I totally forgot about it.)

Here's the link: http://health.nytimes.com/health/gui.../overview.html

[Luongo]

Thanks for the words... I'm the type of person that assumes the worst case scenario (MS) and attacks that first. Unfortunately in this case, MS is so damn murky to actually pin down and all the tests I've had run (other than this ACE thing) don't have any other answers so it's driving me nuts.

As far as what Redwings said, at this point I've had so many 'possible leads' that always eventually result in an inconclusive answer or one that otherwise points to 'healthy' that I'm at the point of assuming it will turn out fruitless regardless.

[Redwings]

Unfortunately in this case, MS is so damn murky to actually pin down and all the tests I've had run (other than this ACE thing) don't have any other answers so it's driving me nuts.

MS is even murkier and harder to pin down WHEN YOU DON'T HAVE IT.

Luongo, from everything you've told us, there is no "this case" of MS. Your insistence that that you have to have MS because there are no other answers is faulty and illogical. Faulty premise => faulty conclusion.

Between the lines of your posts is evidence that you do have issues with your health -- they're just not the ones you think they are. There's no evidence at all that your choice of MS as a disease to pursue is anything but arbitrary. It doesn't appear as if you've assumed a worst-case scenario by focusing on MS -- MS isn't even a worst case. You could have assumed any other disease. Why MS? Is it because it can have an elusive quality that allows you to think you can keep pursuing it as long as there's no evidence to the contrary?

It appears that MS is an illusion you're deluding yourself with, and your pursuit of it is what's "driving you nuts." It takes more than lack of evidence to the contrary to assume MS. It still does take hard evidence to prove, and there isn't any in "your case of MS."

Your inability to force facts to fit into the illusion is "driving you nuts." When you figure out what's compelling you to pursue the illusion, you can choose to free yourself from it, stop being driven by arbitrary assumptions, and pursue the reality that will give you the answers you need, even if they're not the ones you want.

[Luongo]

That's a pretty unnecessary assault.

The first line in my post was "I'll try and recap quickly" and for brevity's sake I left out some other symptoms and details that relate to my belief of MS... the point of the post wasn't to argue my case for thinking I have MS. The point of the post was more along the lines of looking for suggestions about what I can do. Maybe it isn't MS. That doesn't mean you can't offer constructive criticism about what else I could be looking for or what else I could be doing in general. Such contributions as "see a mental health professional" don't fall into the realm of 'constructive' so much as condescension.

[Redwings]

Hi Luongo:
Calling your attention -- front and center -- to something that's completely obvious to a lot of other people but eluding you isn't an assault.

You're asking for constructive criticism and then complaining about the very input you asked for. You're saying that you're not arguing that you have MS but you came back with another reply in the present tense in terms of still thinking that you do. To wit: "...in this case, MS is so damn murky to actually pin down..." "This case" is an odd choice of words from someone implying that he's let go of the MS idea and is just looking for "other suggestions."

The brevity of your posts in this thread isn't the issue. You've had many other posts that reveal your line of thinking and the outcome of it. It's very obvious that you're caught in contradictions while all the while unable to see them.

Over the course of your posts, many people have given you good suggestions. Even in this thread, Lisa (Shashi) and I gave you the exact input you asked for, yet you disregarded it. You got distracted by the parts that you didn't didn't like the sound of, focusing on feeling assaulted rather than learning from the input you asked for.

You said, "That doesn't mean you can't offer constructive criticism about what else I could be looking for..." I DID.
You said, "...or what else I could be doing in general." I DID.

I'll repost:

1) Pursue the lead you have, which is ACE.
2) Explore, perhaps with the help of a mental health professional, why the assumption of MS has so much hold over you so you can find out how to let go of it and pursue more realistic options. I don't agree with your second neuro who thinks you're crazy, but your posts contain evidence that your line of thinking has gone significantly off-track and needs to be redirected.
3) Consult an optometrist -- the functional vision specialist -- to quantify and qualify the visual annoyances that occur when you read and assess for ways to work around them. There are many visual skills dysfunctions that have absolutely nothing to do with systemic disease -- and some that do -- that can be helped with proper treatment. In other words, put your attention where the true problems are.

The suggestion of a therapist isn't an insult -- it's a brave option, especially when your main complaint is that you can't find any other answers. You admitted yourself that you're assuming that things will turn out fruitlessly.

A therapist is a qualified, neutral professional who can give you a safe place to explore why you're so entangled in these contradictions that are keeping you from moving forward. It's apparent that you're not at a point where you can do that with anyone else. Your assumption that it means anything other than that is just another smokescreen that's distracting you from cutting through the debris and getting where you need to go.

Again, you don't realize it, but you have another layer of distress on top of the frustration of your unanswered medical questions that's painfully obvious to other people. It makes me so sad to see you so stuck there, and so stuck about being so stuck.

I'm not insulted at all that you asked for input and then blew it off, protesting about your own reaction to something you didn't like hearing.

Again, I'll repost: "Good luck, Luongo. I hope you can uncover some real answers soon." I really do.

[bellaboostevens]

I was told that an LP was the main way for telling someone that they had MS. I had an MRI, had a lesion but they told me I had a stroke. Then had continual problems after that. Kept going back was afraid I was having TIA's. he finally decided to do a LP to rule out MS, but that was when I was diagnosed. It is not easy to diagnose it, there are quite a few things that mimic it. You need to find a neuro, that will test for everything. Mine did, even after the LP. I made them test again, denial on my behalf. But if the LP comes out fine, you still need to find a good neuro to help you. Things don't go numb for no reason, did they test for neopothy(sp?). not sure what it totally intells, but I know numbness is one thing. What exactly are all your symptoms to think it is MS. that may help other readers let you know if they are having the same probs. good luck.

[MarieT]

And an LP is not necessarily definitive. I had a completely clear LP, but I definitely have MS!

[Luongo]

To wit: "...in this case, MS is so damn murky to actually pin down..." "This case" is an odd choice of words from someone implying that he's let go of the MS idea and is just looking for "other suggestions."

The brevity of your posts in this thread isn't the issue. You've had many other posts that reveal your line of thinking and the outcome of it. It's very obvious that you're caught in contradictions while all the while unable to see them.

Over the course of your posts, many people have given you good suggestions. Even in this thread, Lisa (Shashi) and I gave you the exact input you asked for, yet you disregarded it. You got distracted by the parts that you didn't didn't like the sound of, focusing on feeling assaulted rather than learning from the input you asked for.

1) Pursue the lead you have, which is ACE.
2) Explore, perhaps with the help of a mental health professional, why the assumption of MS has so much hold over you so you can find out how to let go of it and pursue more realistic options. I don't agree with your second neuro who thinks you're crazy, but your posts contain evidence that your line of thinking has gone significantly off-track and needs to be redirected.
3) Consult an optometrist -- the functional vision specialist -- to quantify and qualify the visual annoyances that occur when you read and assess for ways to work around them. There are many visual skills dysfunctions that have absolutely nothing to do with systemic disease -- and some that do -- that can be helped with proper treatment. In other words, put your attention where the true problems are.

To clarify, when I said "in this case", I meant that for someone who wants to immediately either debunk or pin down the 'worst case scenario', it isn't a practical option IN THIS CASE despite that being my natural inclination. I didn't mean 'in my case of MS' which it sounds like you thought.

Again, brevity. Shashi (or Lisa?) immediately countered my symptoms saying they don't sound like MS, but as I mentioned, I left out many symptoms because I didn't feel they were necessary in detailing the actual medical routes I had been pursuing. Vision problems to help shorten the story of going to eye doctors, muscle twitches and numbness to shorten the story of the length of my experiences with neurologists. But if you don't see it, you don't see it, what can I say...

I certainly intend on following up on the ACE thing. Maybe I got a little ahead of myself with this post in general, but as I said, I'm personally fed up with getting teased with answers only to have doctors tell me 'Eh, it will probably go away' after they can't specifically nail anything down.

I've had many other tests with optometrists and neuro-opthamologists so that has been pursued and I'm not sure what else I can do. Some tests (the ON ones I mentioned in the original post) I pass. Some tests (an ERG I mentioned elsewhere) I fail miserably. An ERG, from what I understand, isn't really used heavily in diagnosing ON or related to MS, so again, I'm open to other suggestions because this whole cast of characters has absolutely no answers for me. It's almost been an entire year with my vision like this so I'm not optimistic about my current neuro-optho's advice that it will probably just go away on its own. This is as much a source of frustration as anything.

[oso49]

Luongo

Luongo,

I'll trade ya.....

[Keepin_on]

Hey Luongo,

I know it must be hard and frusterating to have odd symptoms and not be able to explain why. From your posts so far (and obviously I don't know your history of symptoms) you are in the same limbo land as many others. One of the biggest problems with diagnosing MS, is that it mimics so many other things.

The only way to get a diagnosis is ruling out everything else and doing the MRI and possibly a LP. I was diagnosed with a MRI...I had no LP...as I have lesions in my brain consistant with MS and I had major symptoms of MS. By not seeing lesions in your brain or spine (they can see these with or without contrast), it would be difficult to diagnose MS...and your symptoms, though frusterating and scary, mimic anything from MS to diabetes (can effect eyes and many other odd things to sarcoidosis (can effect the eyes). Have you been tested for diabetes (I am assuming, yes)? This would explain the results of ACE test, too.

I would take the news from your neuros and doctors as a good sign that it is probably not MS. I know you wanted a diagnosis to move forward from, but I would take the current diagnosis of no MS to be a good thing and go from there. Maybe instead of attacking the "worst case scenerio" I would attack the best case scenerio or you will probably just make things harder on yourself. Hopefully, the doctors you are seeing will continue to rule other things out so you can move forward.

[Waydwnsouth1]

Luongo

As a matter of point "in the interest of brevity" holds no place when looking talking about MS. It could lead one to believe that the "other symptoms left out" would point to a more definitive NON-DX of MS. It could further lead one to believe that the sx's were omitted intentionally because it would be counterproductive to the results you are looking.

My suggestion to you would two things:
A) read, listen and heed the very sound advice you have been given here.

B) if you have issues with the reponses then RE-POST with ALL the sx that lead you to your MS conclusion.

Good luck to you in your pursuit to finding what is truly wrong with. We MS'ers can certainly understand how you feel. In the interest of your sanity and based on what sx you have given i would drop MS as a possible culprit.

Luongo,

I'll trade ya.....

Hey! No cutting in line!