Thanks for the warm welcome. My GP is the only one who has mentioned MS. He simply asked if there was any family history. I guess that made me wonder. So, he sent me for the mri without contrast and to a neuro. My mri was clear. Good news. Had my neuro appointment yesterday. I left not really sure of her thoughts. She did listen well and seemed to take me seriously (maybe). Anyway, during my exam, the only time she commented was when she did my reflexes with the little hammer. My left leg flew up but my right leg flew(after much banging) never moved. She commented but never mentioned it again. The only other thing I noticed was that I fall to the right on the heel to toe walk. Anyway, I mentioned that I had some sleep paralysis a couple times and that is the direction she seemed to take. I have an EEG tomorrow and a neck xray Friday. Are these part of normal testing when they begin to rule things in or out? Do you find anything significant about my non existent reflex on the right? Also, can I ask for a copy of her notes and if I can have you found it makes them irritated?
she would also want to run a lot of blood tests to rule out over 20 mimic diseases. I am surprised they did not order contrast...
The tests you mentioned are also to see if it is something else causing your problem.
You can ask for a copy, HIPPA rules says you can. It should not irritate them that you ask for a copy, what irritates them is when you disagree with what they say.........if you have a good relationship with them, you can discuss them later with them.
MS is such an individual disease it often takes awhile to figure out. Not often do you get handed a diagnosis right up front. Many of us spend years and many doctors before we get it.......ah.......and then don't often want it!
She may be waiting for the other tests to come back before she gives you her opinion.
Before you leave each time, don't hesitate to ask them what they are thinking, what is the plan, etc., that's what you are paying for and if you are uncomfortable with how its going, quietly look for another doctor......
There are a lot of MS mimics out there, so there will be quite a bit of testing in your near future.
Did you get a copy of your MRI (CD and Radiologist's report)? The reason I ask is that supposedly my brain MRI was "normal," only it wasn't. The Radiologist had identified a lesion, and my second neurologist found another. They are both oviod (which is the "classic" shape for MS lesions). Most labs will provide a copy of the CD and Radiologist report for no additional charge. Some of the best advice I've received here is to get copies of all reports.
As for your visit records, many doctor's offices have online accounts and they will post test results, visit notes, etc. I recommend you do so if you can because I found some inaccurate information in my record from my first neurologist (medication I did not take nor have ever taken). I also obtained a copy of my Ophthalmologist report and they had my age as 56 instead of 46. Things that may be "normal" for a 56 year old may not be so "normal" for someone who is 46!
My current neurologist's office isn't "online" yet, but they have had no problem with providing visit reports/notes for me.
Thanks so much! I don't want to seem like I am seeking an MS diagnosis. I certainly don't WANT to have it or anything else for that matter. I just need an answer for what is going on. I am to the point where I am not exactly afraid of much except the not knowing. She did draw blood which she said was to check B12 but it was two vials so I suspect it will check other stuff too. I did get my MRI cd and biologist report. It said normal basically but she has not reviewed it yet. I guess I'm just wondering if the EEG is a normal part of the process. I also forgot to mention that she ordered a nerve conduction (is that right?) test as well. I will definitely ask for a copy of notes. Oh yea, any thoughts on my reflexes? I found it odd.
When I first began the testing process I had EMG for both my right arm and leg. An abnormal EMG would mean most likely not MS. For example, my first neurologist thought my problems in my right hand were due to carpal tunnel, but they were normal.
If MS is suspected they will run tests to check for vitamin deficiencies, thyroid, diabetes and loads of other things for the process of elimination. The clean MRI is good news and the other tests may reveal something else entirely. In my case they haven't found anything else yet. My neurologist is sending me to an MS specialist and I'll see him next week.
Ugh, need to clarify. An abnormal EMG would point away from MS. One could have carpal tunnel and MS, but for diagnosing MS it would likely mean that MS isn't the culprit. I still feel like I'm not saying it right!
Thanks. I understood what you are saying I believe. I understand it as that an abnormal EMG does not completely rule out MS but would make it less likely. My test tomorrow is an EEG which I believe is to check for seizure activity. I assume that is because of my episodes of sleep paralysis which if I'm right is not an MS symptom. I think the neck xray is for that as well. My EMG is not until May and I am not great at waiting lol. So, in the meantime I will just have to sit tight I guess. I am considering seeing a chiro in the meantime for my back pain. Who knows, they may have some insight and be able to help with the pain. It is around my upper back and rib area and sometimes is completely gone and other times makes me want to cry. Anywho, thanks for taking time to reply!
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