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Back in ER after i completely lost use of my right side yesterday morning. Im here overnight. Symptoms dramatically got worse and older symptoms remain. They did a CAT Scan and MRI of head and neck. Cat scan came back normal but MRI results are not in.
About three doctors have seen me and I supposedly miserably failed their quick neuro tests. Horrid stutter. However… it seems better in the morning, always. It will get gradually worse.
We shall see.
Everything possible has come across my mind before because nothing fit. It has been all over the place. I did think of neurotoxins like heavy metals of mercury. I would do a heavy metal screen. I thought of copper but you don't have any anemia.
A neurologist should be able to run everything. There might also be some genetic components there but it does seem like a neurotoxin is at work. There also might do a spinal tap to rule out meningoencephalitis and neurosiphilis which can also give incontinence.
I would wait for the MRI rather than simply go by the CT. There's no epilepsy so I would presume there is no space occupying lesions like cysticercosis or anything else.
It must be pretty scary but hold on. At least you are at the hospital and they will get to the bottom of it. I hope it's a large hospital and not a small one. You really need top-notch diagnostics and doctors. I was not impressed at all by the ER doctors there not even doing a neuro exam with your stroke symptoms when you went in with slurred speech.
My MRI results came back normal, no lesions. Ruled out MS
Wow, the mystery continues. This reminds me of those weekly articles in the NY Times Magazine (feature articles), about medical mystery cases that present themselves, and doctors have to figure them out. These cases tend to boil down to finding the right specialist, the right guy (or gal) who happens to have the right niche experience up his/her sleeve.
Thanks for the updates. We're rooting for you! At least you've now got someone working on your case in a dedicated manner.
Update: As my Head MRI results came back normal, they ordered a Lumbar spinal one. That one also came back normal. Ithimk what they are leaning towards in “Hemiplegic Migraines” although they dont know, because there were no markings on the MRI for that. But my symptoms matched. My symptoms got better and I can walk/talk (not to full ability, but 80%).
My next step is seeing a neurologist as an outpatient to figure out what is goin on. For some reason, i just dont buy the hemiplegic migraines. Especially if its not on an MRI
Im not even entirely sure if they ruled out Multiple Sclerosis
Update: As my Head MRI results came back normal, they ordered a Lumbar spinal one. That one also came back normal. Ithimk what they are leaning towards in “Hemiplegic Migraines” although they dont know, because there were no markings on the MRI for that. But my symptoms matched. My symptoms got better and I can walk/talk (not to full ability, but 80%).
My next step is seeing a neurologist as an outpatient to figure out what is goin on. For some reason, i just dont buy the hemiplegic migraines. Especially if its not on an MRI
Im not even entirely sure if they ruled out Multiple Sclerosis
Something is wrong there. You are implying that you have not seen a neurologist. You should have seen a neurologist at the hospital. They should have guided all medical decision-making. You should not need to see a neurologist as an outpatient to figure things out. That diagnosis is basically one of exclusion so one needs to be certain everything else is ok.
What you have are remarkable symptoms that are not showing up on imaging studies. Urge to pee followed by pelvic pain is something that I never associated with migraine but it is stated in the literature. I suffer from migraines all of the time but never suffered as you have. If those symptoms were to be MS I would guess that you would have at least one lesion visible on imaging. MRI is better than CT for that which is what they did.
I was thinking TIA but there are too many symptoms for that and the vascularity was reflected by the acute onset of being fine one minute and then the next exhibiting remarkable symptoms.
What I have read is that HM workups should include imaging and spinal fluid analysis. Sometimes inflammatory changes can be seen with imaging but not always. Infectious causes need to be ruled out with the spinal tap. I don't know if the neurologist would do that at this point but there is a subset of HM patients that can reflect a lymphocytic pleocytosis (elevated white count) in that subset of HM and is periodic. There can be elevated protein levels in the CSF. The spinal fluid can also reveal oligoclonal banding and or elevated levels of myelin basic protein seen in MS and do an IgG synthesis rate to help interpretation at the brain level. It is preferred that a neurologist perform the spinal tap on a personal level as they are better at performing one compared to ER doctors in general. The last on that list are the residents and interns being checked out on the procedure.
I don't know if you got a migraine aura or not but I have had them since being a child. The flashing lights and field deficits are something unmistakable. I know the age of onset for HM is in the twenties it states but curious if you were a previous migraine sufferer or not. Something to give you a heads up about. Like other migraines, food that one eats or sun glare with lighting and reflections can trigger them.
Good to hear that so far it isn't something more pernicious and we were all pulling for you. It's always good to have negative findings. The fewer the better.
Suddenly, I''m not following this story. I thought it was a neurologist who sent you to the hospital when you got those emergency symptoms...? Reviewing your posts, I see your PCP referred you to a neurologist, but it sounds like you haven't seen one yet?
I guess all we can do is hang tight and wait for further testing and diagnostic work.
I went to my PCP on Tuesday and then she was going to refer me to a neuro. However, the next day I completed lost my ability to walk or talk so I went to the ER again. Where, they performed four MRIs and the neuro team was following me closely.
I was discharged, without a diagnosis. However, i notice on one of my MRIs I had a “Capillary Telangiecstasia on my Brain Parenchyma”
I plateud. Speech and walking is like 70% back to normal but happens in episodes. But going on day three feeling the same.
have you done anything unusual lately to cause all these bizzarre symptoms?
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