I was wondering where you’re located. If you can’t get a dx at the larger hospital, it might be worthwhile to try a teaching hospital or someplace like one of the Mayo Clinic locations.
Neurology can be really tricky. Your symptoms remind me of my initial migraine episodes when they got bad. I agree with the other forum members that you could also be experiencing anxiety/panic with other symptoms. It’s understandable.
One suggestion as you are looking for a diagnosis; keep a diary and track everything you eat and drink, your activities (including hobbies and chores), and all medications and supplements taken every single day. Then note days when you have a spell such as dizziness or falling. Your wife can add anything she notices, too. This can be a *huge *help to the doctors.
Went to larger hospital. Transferred me to a university hospital.
Symptoms are worse along with newer ones. Doctors still don’t know but they’ve ruled out some things. Whole team of doctors and lots and lots of tests.
Thanks for all the replies. It was calming to “talk” with knowledgeable people. Will update when more is known.
Sorry you’re having new symptoms, but I’m glad you’ve been transferred someplace that can help. I hope you have a smooth diagnosis and recovery from here out.
In med school you get your head filled with information about all sorts of rare diseases, reinforced by quizzes on them (since that will show who actually studied - if the answer is “the common cold” and everybody can successfully guess that, then the question proves nothing*). And there’s a tendancy in teaching hospitals to let somebody “run with” a zebra diagnosis at least a little bit (assuming it wouldn’t actually harm a patient by either delaying useful treatment or by causing expensive / unpleasant / etc. testing). Presumably the idea is to reinforce the “not zebras” by letting the student discover that, instead of just telling them “no, it’s [amazingly common] X”.
Some of these questions are incredibly complex shaggy dog stories designed to mislead the student with lots of irrelevant info, along with a little info needed to make an accurate diagnosis.
A surprisingly (to me, at least) large percentage of med students develop hypochondria, fixating on some rare / improbable disease.
I just read now read through this thread and I must agree with GumpyBunny about the importance of keeping a log.
But I would like to suggest there may be another reason for keeping the log which is completely different from medical considerations.
You have used the word “we” when describing your situation and so I assume you are either married or live with some friends or relatives.
I don’t want to upset you or add any more to your problems. But I think that if it is true that you are married, you may want to prepare for the worst case scenario as something important to do for your spouse. If you think that what I’m about to say will give you additional stress that may cause you additional symptoms or problems, I will put it into a spoiler box and perhaps you could have your spouse (or a trusted friend) read it and decide whether it would be best for you to read it or to let them tell you what they think is important.
Please forgive me for speaking of this. But it may be wise to consider the possibility so that you can leave your spouse in the best position should you die or suffer some non-fatal event that leaves you in a state unable to deal with your affairs. I am twenty years older than you and so perhaps I have contemplated this kind of thing more than you have. As we grow older, I think this is something we all need to contemplate - legal things like a living will that make your wishes known should you die or suffer some catastrophic medical event.
If I was you, I would contemplate the worst-case scenario in order to leave my spouse in the best possible position to conclude my affairs. That includes instructions for whether you want a DNR (Do Not Resuscitate) order and other legal considerations.
If your spouse should feel that the medical people were somehow negligent, your spouse may want to seek legal action. If that should happen, I would want my spouse to have a log with as much information so that they would have the best chance to succeed with any legal action.
In fact, it may be a good idea for your spouse to contact a lawyer right away. One who has good experience in this field to get their advice for what you should do now so that your spouse has the best possible chance to succeed in any subsequent legal action.
I would Google for recent cases where people who received negligent medical care won subsequent law suits against the doctors and hospitals and medical insurance agencies and then contact the lawyers who represented them and who helped them win in a legal suit against the doctors and hospitals and insurance agencies. That is one way to find a suitable lawyer. Alternatively, you may know some lawyers who could advise you on the best lawyers in your area to handle this sort of thing.
I apologize for raising this prospect. I know it must be pretty scary to read about this. Please believe me that I am suggesting these things strictly in the hope they may help you and yours. Best of luck to you and may God bless you.
WTF? A wee bit premature, don’t you think? There isn’t even a diagnosis yet, and your point is that his widow should already be preparing for legal action? Wow.
Allow me to state now for the record Charlie Wayne that I am not your doctor and that any discussions I have on these boards, especially with you, do not constitute medical advice!
Two Wheels,
Continued best wishes and hang in there through what is often an arduous diagnostic process. May your new year be a good one!
I am on some pretty heavy pain medicine so I’m a little loopy. I am in the ICU. My hands have also been affected so it is vary difficult to type.
the doctors still are not sure what exactly is oing on, ecept that it is definitely some kind of auto-immune disease. I started having trouble breathing so they felt it best to go ahead and start IVIG treatment even though they don’t have a definite diagnosis.
I want to say thanks for all the caring replies. I really appresiate it. You guys are the best:)
Wishing you a speedy diagnosis, sorry the update you’re sharing isn’t better news. Here’s hoping they get a diagnosis sorted very soon. Glad you’re in a hospital until they do. (I’ve been worrying, I confess!)
You’ll be in my thoughts, I’m sending you all my ‘get better RIGHT NOW !’ hopes and prayers!
That progression still points to Guillain-Barre; if so, you should get relief from the IVIG treatment soon. Did your symptoms start around the time you got a flu vaccine, or were you sick with flu (stomach or lung) type symptoms before the eye problems?
I just wanted to say that I’m glad you are getting help and best wishes for a speedy recovery. It sounds like you are in the right type of hospital if they have multiple specialists seeing you and they do seem to be aggressive about treating you which is good. Keep us updated and let’s hope that the IVIG works.
USCDiver, OP is male, 46 years old. But of course otherwise of course you are correct.
sweat209, believe it or not sometimes the best teams of doctors in the best places have to keep working through a process. Right now they have apparently crossed many things off the list. It may end up getting classified as an atypical or variant of Guillain-Barre as suggested by bobkitty. That is an acute polyneuropathy and really requires ruling lots of other possible diagnoses out. It often follows various viral infections such as a cold or a stomach flu. They are handling it as if it is but may not want to label it as such yet as the visual perceptual parts being a main part of the initial presentation is a bit odd for the condition (visual motor is less uncommon).
Good news is that if it is that the treatment he is getting should help but it is a very scary thing to live through and recovery can take time.
