Neuro Appointment update
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| Sun, 01-27-2008 - 1:22pm |
Cait saw the neurologist on Wednesday and it was a busy one.
I had a printed list of my concerns, her symptoms and a time line of these over the past 2 years. Cait has been having episodes of horrible fatigue over the past 2-3 years as well that we have gone to the ped about so I added all of her current symptoms into the time line.
The doc did a thorough neuro exam including some reflex tests and sensation tests I hadn't seen before. She found Cait's feet had a decreased sensation to vibration which indicates a neuropathy. A single neuropathy wouldn't be incredibly concerning by itself in a kid with ASD but combined with the others could be an indicator of something significant. Kind of like a lesion on her MRI alone may or may not mean anything. It is the combination of things.
So basically there is something going on. The doctors highest probability is MS or another demylination type issue. However, there are other things it could be as well including heavy metal poisoning or the off chance it is seizure related but that isn't likely. Could be as a last resort Migraines, but that is a diagnosis of elimination and her symptoms don't quite fit. There are also many rare disorders it could be as well.
So the plan is to first test for MS, heavy metals and seizure activity as well as see an opthamologist to rule out something structural in her eye (but it doesn't match symptoms wise either). She had a blood test on Wednesday for the metals and I will get the results this week. She is having an MRI this week, most likely Wednesday, and a 24 EEG as soon as they can schedule it.
I call or email the neuro this week for the results of the first 2 tests and go see the new neuro on the 20th of February to go over results, etc. If we haven't found an answer prior to the 20th appointment then we start testing for the more rare disorders.
That's the update.
Renee




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Don't know if you remember me.....being AWAL for about a year now......got a full time job and lost all of my free time.
Her main symptoms at this time which indicate MS are episodes of double vision and fatigue which wouldn't be the same as those which mimic arthritis I believe. Thanks for thinking of me though. I do remember you. We had been thinking it was seizure related but double vision isn't a common seizure thing though it can be related to medication side effects but we ruled that out first.
She does go to the opthamologist tomorrow to rule out anything structural with her eyes though.
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Edited 2/19/2008 1:03 pm ET by littleroses
Ahhh.....double vision....that explains why migraines may be an option......does she have a positive ANA (bloodtest)?
Hi Renee,
This must be such a tough time.
The neuro sounds very thorough and not the type to pussyfoot about, which is a good thing.
visit my blog at www.onesickmother.com
Thank you all,
First, I have no clue what an ANA blood test is. She has had 3 blood tests already but I don't recall that being one of them. The MS pretty much at this point is being guessed by her symptoms (the 2 mentioned, the decreased sensation in the foot, and a couple others), how they present and her incomplete MRI. She does have one lesion consistent on her MRI but should have more. But since it is incomplete we have to redo.
Anemia - that was the first thing we tested for 2 years ago when the horrible fatigue started. She didn't have that and it doesn't account for the DV.
Thyroid - The doctor mentioned that but didn't think likely because she doesn't have all the symptoms and it doesn't account for all her symptoms. It is one of those things we will likely test for if the first group doesn't produce an answer. Like I mentioned, she had about 6 vials of blood taken on Wednesday for a bunch of heavy metals, lyme and something else. Doc didn't want to do more at that time.
I am making a calendar of her symptoms and I am supposed to write down what she has eaten at the doctors request. I am going to record her periods, and other stuff as well.
Looked up Chiari today as well. I think they will look for that in her MRI (one would hope) but I will be sure to ask but again, it doesn't account for all her symptoms and she doesn't have many of the main ones that point to it.
Good thoughts all. Thanks for the input and it gives me more to research.
Renee
I feel like I've said this a million times already- but more hugs and more prayers are headed your way.
(((((Renee & Cait)))))
Amy
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