Help! Undiagnosed medical problem is getting worse. I don't know where to turn.

In My Humble Opinion
1

I read the SDMB all of the time, but rarely post. I have seen much good advise given here, and even when bad advise is given, someone invariably comes along to correct it. So since both my wife and I have no idea what to do next, hopefully someone here can help.

On December 1st I noticed that the color perception in my left eye was making colors look washed out when compared to my right eye. That prompted the visit to doctor #1. She ran a few tests, all of which came back normal, and then sent me to see an ophthalmologist the same day. She also scheduled an MRI.

The ophthalmologist saw nothing wrong, so he sent me to see a Neuro-ophthalmologist. I’ve seen the Neuro-ophthalmologist twice so far. He is sending me to see a neurologist next week. He gave me strict instructions that if anything gets worse before I see the neurologist to go straight to the emergency room.

Since the first of the month, there have been an enormous amount of symptoms appearing out of nowhere and continually getting worse. The left eye’s color perception is getting worse, and the left eye is now unable to focus. Other weird symptoms are:

  • Seeing strobe lights and fireflies in my peripheral vision
    Balance issues, although there is no dizziness or faint feeling. I will suddenly just fall over.

  • Muscle weakness. I’m almost to the point where I don’t have the strength to stand.

  • Tingling in hands and feet.

  • Sharp stabbing pains in random locations, mostly the feet. (very painful)

  • Headaches that last forever and no over the counter pain relievers will provide even the slightest relief.

  • Shortness of Breath, even when laying still.

  • Occasional tightness in my chest. Feels like a rope is tied around my midsection.

  • Extreme muscle pain, particularly in my legs. The pain is much more intense when the muscles are stationary, so I’m constantly wiggling and jerking to decrease the pain.

  • And a new symptom I just noticed: typing on a keyboard is more difficult than it was a month ago.

On Christmas Eve, following doctor’s orders since things were getting worse, I went to the ER. They ran every test they could think of and everything came back normal. So they sent me home.

In the past 2 days, symptoms have gotten still worse! I’m thinking I should return to the ER, but I was just there and they found nothing!

In fact, every test that has been ran by all doctors I have seen so far have come back normal, except for two tests at the neuro-opthamologist. One test showed a loss of peripheral vision, especially in the left eye. The other test I forget what it was called, but they hooked wires up to my head and had me watch patterns on a screen. I’m not sure what exactly it was looking for, but the left eye came back abnormal.

Obviously, I’m terrified! A month ago I was perfectly healthy. Where should I turn? What should I do? I don’t want to just sit here waiting for the neurologist appointment while some symptoms are getting worse by the day. I don’t want to spend another night in the ER, just to be told that everything looks normal, we don’t think your going to die, go home and follow up with a Neurologist.

I realize this is not a medical forum but any advise or shared experiences would be appreciated.

2

Did you have the MRI? Sounds like Multiple Sclerosis with Optic Neuritis might be a consideration.

3

Thanks for the reply, USCDiver!

Yes, I had the MRI. It came back normal. The neuro-opthalmologist said that it could be MS at the first visit. (before the MRI). However, since the MRI showed nothing, he is looking for other possibilities.

4

Shingles will cause similar symptoms in some cases and will affect your eyes as well.

5

Any problems speaking, chewing, or swallowing? Guillain-Barre syndrome might be a possibility, and would not show on an MRI.

6

Thanks, astro. I just read that whole link and don’t think that’s what’s going on.

I’m really not looking for a diagnosis here. Yes a confirmed diagnosis would be welcome, because having all of these symptoms and not knowing what’s going on is a miserable experience.

But here what I’m looking for is advise. It is four days before I see the neurologist, and symptoms are getting worse daily. We have never had any medical issues up to this point, so my wife and I are totally inexperienced. Should I just wait for that appointment? Should I return to the ER because symptoms are getting worse and that’s what the doctor said to do, even though I was just there? Should I drive to a larger town that probably has a better staffed and better equipped ER?

Finances should not even enter into the decision, but although we have insurance, this has already taken a toll on our finances. Another visit to an ER just to be told, “We can’t find anything wrong, see the Neurologist on Wednesday” would be money we really can’t afford to spend. Especially if it’s going to do no good.

7

Thanks bobkitty. That’s a symptom I forgot to list. I am occasionally getting tripped up on random words when talking. The Miller-Fisher variant of Guillain-Barre syndrome is another possibility that the doctor mentioned. I’m going for more bloodwork on Monday to check for an antibody that is unique to Miller-Fisher.

8

Severe headaches with vision changes would have me camped out at an ER. Add in the deteriorating muscle strength, and they would have to force me out. A better equipped ER might be your best bet; regardless, I wouldn’t wait for the neuro appointment.

9

Call the neurologist’s office and tell them exactly what you’ve told us - symptoms are progressing rapidly and the ER doesn’t seem equipped to help. Hopefully, they’ll work you in quicker, or at least coordinate with the ER.

Good luck.

10

OK, let me give you the low-down on the ER thing.

You’ve already experienced what will happen when you go to the ER. They’re going to run the basic tests to make sure you don’t have some immediate life-threatening thing going on. Their goal is not to find a diagnosis. If everything is normal AND you can continue to function then you are safe to wait until your Neurologist appointment.

That being said, it sounds like you’re getting to the point where you can’t function at home and even may be dangerous to be at home due to the risk of falling, etc. In that case a trip back to the ER in order to be admitted to the hospital may be in order.

Just want you to know what to expect from the ER and what not to. Even going to a ‘bigger city ER’ is not necessarily going to get anything different in terms of tests available.

11

That’s what I’m leaning towards. Your are right the symptoms are very concerning.

We live in a small town with a tiny hospital. The nearest “proper” hospital is about 20 miles. We just may have to make that drive in the morning.

12

I’ll try that on Monday, thanks!

13

You are right that it is getting difficult to function at home, especially when my wife is at work. I’ve already panicked our two children serveral times by falling.

14

Another thing I’ll say is that it’s frustrating as an ER provider to have a patient show up who has had a big workup done in another facility (that I have no access to) and expect that I’m going to know what to do next. At the very least go to your local hospital first and get your records to carry with you.

15

Good advice, Thanks!

16

The only practical difference is what happens after he gets admitted, assuming that such occurs. If he shows up in the ED of the hospital that his neurologist is on staff at then maybe a proper in-patient diagnostic work-up would be facilitated?

I have little expertise to offer up here but it sounds like some sort of polyneuropathy or polyneuritis, and a quick search comes up with things like Devic’s Disease (neuromyelitis optica). That would need a spinal MRI for diagnosis (brain MRI normal and oligoclonal bands often negative). Then again that usually has bladder or bowel problems. In any case it seems that being somewhere that they are used to thinking of zebras is in order.

17

Thinking of zebras??:confused:

18

Old phrase “When you hear hoof beats, think horses not zebras” that means think of the most common diagnosis first before thinking of rare or exotic diagnoses (horses are more likely to be running by than zebras). He’s suggesting it may be time for specialists who are good at thinking of the rare events.

19

I’m not sure the expression is apt, it’s usually used in the context of an undesirable tendency to overlook the most likely explanation in favor of an obscure one. I think here DSeid means simply that if common conditions have been ruled out, then you may need to see a specialist.

20

Thanks for the explanation.