Upcoming Doctor's Appt

Well, you've been to a neuro already, and a lesion (spot) has been found. Do you have those medical records, or have you made sure they've been passed along to your new doctor?  If not -- that would be crucial that you make sure that happens.

You've already apparently done what I'd suggest -- write down all your symptoms, particularly those that occurred since the last MRI, and share that with your doctor.  If you can, take someone with you to help you ask questions or get the answers. It's likely you'll hear all sorts of information from the doctor and it's hard to keep it all straight when you're already anxious and scared (justifiably so).

He'll likely take a complete medical history, review those old tests, and ask what is currently going on that brought you back to the neuro.  He'll check for balance, strength, look at your eyes, ask about the foot drop (that foot dragging thing you mentioned), the L'Hermittes (that electrical shock feeling down your neck and back), and the rest of it,

so it's important that you do your best to be brief, succinct, to the point. Start with your most annoying or challenging or difficult symptom(s) first, working your way to the least troublesome. That way you'll at least get the most difficult stuff mentioned, should you run out of time.

Good luck! Let us know how it goes!

Hey Doodle,

You have gotten some excellent advice from Uppitycats.  I would just like to offer my support.  Hang in there and do bring your husband.  Mine goes to all my neuro appointments and pipes up on things he sees like memory (my memory is pretty good lol).  He is an extra set of ears as well and helps me to take in all information.  You are right that it can take quite some time to get a diagnosis so be patient but persistent.  We are here to help you.  Ask lots of questions and vent all you want. 

I loved your post on driving with your teenager.  Heheheh.  I have a 13 year old and do not look forward to those driving lessons.  Maybe I can send my son to you.

Love and prayers,

doodle67 said...
I went to the neuro yesterday.  I think I actually like him better than the specialist I was seeing that dropped from my insurance.  He did the standard initial visit criteria.  Symptoms, strength tests, vision.  Sent me for blood work.  I go on October 1st and have the MRI (with and without contrast) of the brain and spine.  Then I go on the next day for an EMG.  Hopefully, I will get some answers.  I told him I wasn't sure if all of the symptoms I was experiencing can be contributed to one thing as I am also going through perimenopause.  I thought I was doing so good..I made a list of all of the things I have been experiencing such as memory loss and guess what...I forgot to take the list...

No, I haven't had an EMG. Here's a website that explains more clearly what the test is, and what they're testing for:

http://www.emedicinehealth.com/electromyography_emg/article_em.htm

Sounds like your doctor is being thorough, covering all possibilities, to try to figure out what's going on with you.

doodle67 said...
Uppity, I know you are not a doc and can't diagnose but you do an excellent job of providing first hand knowledge so thought I would ask. I should have asked the doctor yesterday but everything kind of hits you at once and after you leave you think of this stuff. He did the vision test, walking and a few basic tests. He said neurologically everything looked fine. Symptom wise, I did have some of the same symptoms of MS and several other diseases and that is why he was doing the blood tests to rule out other options. I did not voice my opinion as to my thinking MS. He was also doing a MRI as I have not had one for a couple of years to look for more lesions as I did have the one area on the original MRI's showing mid brain of brainstem. I never had an MRI done of the spine so not sure if anything would have shown up there. IF nothing conclusive shows up on the MRI other than the one spot, do they normally have a wait and see approach? Or is the symptoms and abnormal MRI showing the one spot enough for them to start treatment to avoid possible further lesions.

He said "neurologically everything looked fine"?  Then he's looking for something that's not neurological, something systemic, that might be causing your symptoms.  Those tests he did in the office, while seeming to be basic, can really tell him a lot about what might be going on with your nervous system.

The MRI's you have scheduled of both your brain and spine? They generally don't do an MRI of the spine unless there are problems like walking (if there is a lesion in the spine, anything below that lesion would be adversely affected) or sometimes bowel and bladder problems, if there isn't something else they can identify that is causing those issues. You've got some of those problems, to be sure, so perhaps lesions will show up on the spinal MRI.  That's where my lesions first appeared.

Usually someone is told "we have to watch and wait" when all the tests come back negative -- that is, "nothing wrong, here!" -- yet the patient is still exhibiting some symptoms.  If only the one spot shows up on the MRI and there are no other "positive" results" -- meaning, "hey, this is out of whack, here!" -- then yes, you have to watch and wait, keep track of current symptoms and anything new that might come along,

and maybe, eventually, over time, there'll be enough new stuff  happening that the diagnosis can happen....or not.  In the meantime, though, you should ask about symptom relief. Some of the meds that can help with bowels and bladder control, for example, aren't specific to MS, and might be helpful, as well as the muscle spasticity and some of the other stuff.  So if the symptoms get to be real troublesome, talk to your doctor about treating those, while you're waiting for something more to appear.