Your presentation isn’t classic, but unilateral vision changes, headache and muscle weakness make me concerned for polymyalgia rheumatica with temporal arteries. It’s fairly quick to evaluate for and treat but if left untreated your vision can be permanently affected. I imagine they have already screened but if not if I would mention it at your next ED trip or doctors visit.
Thank you, Gestalt. I just googled it and I don’t believe that’s what it is, but it is definitely on my list of things to talk about with the next doctor I see.
What kind of imaging study was done in terms of the MRI? Was it done with contrast/FLAIR?
It may be too early to throw out the diagnosis of MS, especially since it fits in so well with your listed symptoms. A certain and significant percentage of patients later found to have MS will have an initial negative MRI. How long ago were you tested? It may be time for a repeat of the test, especially given that you note progression of symptoms.
The MRI was done on the 18th. It was of my head both with and without contrast.
If you don’t mind me asking, what sex and age are you?
The point intended is as IvoryTowerDenizen explains. Not just “a specialist.” I am in general not a big fan of teaching hospitals and what is often an overkill approach; but some circumstances benefit from the method.
The big medical school teaching hospitals are infamous for coming up with every possible obscure possibility when the more mundane is much much more probable. Sometimes however someone thinking of all the obscure possibilities is the needed course. Sometimes thinking of the zebras is appropriate. Even though we farther out in the funnel* make fun of the tendency.
Again, not my expertise, but this does not sound like any horses I know anyway … although Gestalt’s thought is a good one to consider.
If you do get admitted at a teaching hospital you may be “the interesting case” presented for discussion at Morning Report. You generally do not want to be “the interesting case.” So hopefully not!
cromulent’s point illustrates another aspect related to the “zebra” comment … while sometimes thinking of zebras is the needed course of action another maxim is that the more common presenting in an uncommon fashion is still more common that the uncommon presenting classically.
Best of luck getting the right help quickly and getting appropriate treatment as soon as is realistically possible!
*That is another reference to how things work in medicine … the big teaching centers are one end of the funnel seeing an over-representation of what is overall extremely uncommon as the common is taken care of in other settings. As a consequence they perceive the rare as being much more common than it is.
Male 46
By the way, the test the ophthalmologist performed with electrodes attached to your head in which you looked at patterns is called Visually Evoked Potential testing. If it showed abnormal results, then it demonstrates a problem along the visual pathway (most likely the optic nerve given what you’ve described.)
I was just feeding the cats and fell again. It’s really weird, because there is no sensation of losing balance, being dizzy, or feeling faint. I will suddenly find myself on the floor with no perception of falling.
My wife is insistent that we go to the bigger ER 20 miles away. The tone in her voice tells me that this is not a battle I’m going to want to fight, so I guess we will be leaving soon. Thanks to everyone who replied.
It really doesn’t sound like it’s safe for you to be at home right now. I agree with going to the bigger hospital with an eye toward being admitted.
Just seeing this thread now. Hope you get the help you need at the bigger hospital. Hoping that’s where the neurologist is and you can be admitted. If there’s a neurology department, it’s possible you could get a consult even on Sunday, as they often see newly admitted patients when they come in to check on previously hospitalized patients. Even if you don’t see the neurologist yourself, they may order tests to get done and ready for review Monday morning.
At any rate, that’s what I would give as a next step. Head to an even farther hospital if you need to, where there’s a neuro department.
The problem with your vision and possible neurological problems could have set off a series of events leading to severe panic attacks. Numbness and tingling in the arms and legs could be attributed to this, I know from first hand experience. A severe panic attack can also release some chemicals into your brain that could literaly make you fall over if you were leaning, shortness of breath and everything else you describe. My guess would be you have some kind of vision problem and panic attacks are creating an entire scope of symptoms on their own. Good luck, I can understand the fear you are feeling.
It hasn’t been mentioned, yet – did they check your thyroid? I can’t speak for the vision issues, but some of the others are issues I had when my thyroid went on the fritz.
Normally I would recommend calling the neurologist’s office to try to get an earlier appointment but given that your symptoms are getting worse I would suggest an ER visit. I second the suggestion to get copies of any studies already done. I also recommend going to a tertiary care center. In a case with a difficult diagnosis I think that having your case presented at a conference with multiple specialists and with doctors in training who are encouraged to consider even obscure diagnoses may be best. If there is a nearby hospital that trains neurologists that would be best. There are definitely many conditions that could cause your symptoms.
P.S. Make sure that they test for syphilis.
Normally I would recommend calling the neurologist’s office to try to get an earlier appointment but given that your symptoms are getting worse I would suggest an ER visit. I second the suggestion to get copies of any studies already done. I also recommend going to a tertiary care center. In a case with a difficult diagnosis I think that having your case presented at a conference with multiple specialists and with doctors in training who are encouraged to consider even obscure diagnoses may be best. If there is a nearby hospital that trains neurologists that would be best. There are definitely many conditions that could cause your symptoms.
P.S. Make sure that they test for syphilis.
Any luck getting a diagnosis Two Wheels? I have been thinking about you ever since this thread appeared and am curious if and hopeful that you are getting the help you need…
Probably outside zebradom into the hyena hoofdom area, but . . .
Several years ago I had a series of seizures; I had a few petit mals I wasn’t really aware of and a few of the symptoms you’re having matched: inexplicably falling, losing a bit of time, and suddenly finding myself on the floor. I also had some odd vision stuff like blurring and, at times, things like lamps seemed to move on their own and leave a blurry trail (for lack of a better description).
Shortly after the small seizures I had a few grand mals and they left me weak, prone to falling, and caused some scary visual disturbances/hallucinations. The neuro thinks the seizures were caused by the Tramadol I was taking for a foot injury (Tramadol has a bad reputation for provoking seizures). At any rate, I take an anti-epileptic drug and haven’t had any episodes since these events.
Could seizures be something to consider? Are you taking any OTC or RX meds that may possibly provoke seizures? Family with a history of epilepsy?
To add: have you had an EEG to track electrical activity in your brain? For me, at least, an MRI, MRI with contrast, and CAT scan didn’t yield anything; it was the EEG that confirmed the problems.
I’m sorry to hear that you suffering so. As bad as symptoms can be, they are worse when the cause is a mystery.
I suspect that not all your symptoms have the same origin (Occam just rolled over in his grave) and, indeed, that some of them may be manifestations of anxiety that the other symptoms have caused. For example, both the sensations of breathlessness and chest tightness (when at rest) are common accompaniments of anxiety states.
On the other hand, many of your other symptoms are quite consistent with neuropathy. There are many categories of causes of neuropathy. But, before looking for a cause, the presence of neuropathy would need to be confirmed. You may well wind up getting what are called nerve conduction studies and an EMG. Not only can they establish the presence of neuropathy but, if positive, the pattern of abnormality often helps pinpoint the cause (or at least the category of its cause, e.g. metabolic, nutritional, inflammatory, etc.).
And, just to be explicit about it, neuropathy can sometimes also cause visual disturbances (or both can be caused by the same underlying condition).
Please keep us posted.
Good luck!
Yup, keep us posted.
I know from personal experience that when I have health issues and I get worried, the anxiety can either add to the symptoms or create new symptoms. So that could be adding to the confusion. I’m obviously not a doctor, but some of your symptoms sound like they ‘could’ be due to anxiety which could be a side effect of your primary condition.
Shortness of breath, chest tightness, tingling, etc. ‘could’ be due (then again, maybe not I don’t know) to anxiety from whatever is going wrong, not from the underlying health condition itself.