Upcoming Doctor's Appt

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doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/5/2007 11:59 AM (GMT -7)   
Wow!  Don't know where to begin.  I went to the doctor three years ago when I was 36 due to fainting episodes I was having.  I sought the help of a neuro and discovered an area mid-brain of my brainstem.  I later found out the fainting was from something simple and unrelated but now had a new problem...the spot.  Depending upon which doctor I saw, the diagnosis changed. I had blood work, MRI, Spinal...you name it.  One doctor said 80% chance of MS. The other said either MS or a tumor.  Mortality within 15 months was the average if it was a tumor based upon the location.  Good news...after two follow up MRI's and visits...I am still here.  I did not have any clinical symptoms and was reschduled for a visit in two years unless I had any neurological developments. It has been 2 1/2 years and I didn't go back for a recheck.  Guess what? I have had some things going on. Wanted to get some insight to see kinda what to expect as I go to the doctor on Monday.  I am having to go to a new doctor on Monday as my neuro (that I loved!) is no longer in my insurance plan. 
 
Things I have been overlooking but have gotten to the point that I can't:  can't concentrate, memory issues, can't find the words that I am trying to say, I type or say a word that is completely different from what I was intending, clumsy (just fell again as a matter of fact), can't seem to get my foot up when I am walking sometimes, dropping things, very tired in the afternoons, wake up in the morning and feel like I haven't rested at all, blurry vision that the eye doctor can't seem to get straight, muscle spasms in my right leg, knee buckles at times, two months ago had pain in my left eye that hurt to move it, itching and burning on my skin, shaky hand movements, only once I have felt an electrical shock when I bent my head down but went away very quickly when I raised my neck, slight buzz in my ear, constipation and having to take laxatives, sex drive is down.  I wrote all my things down that seem to be bothering or occuring and this was what I came up with.  Anyone out there can help me understand or prepare for what I am afraid they will tell me.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/5/2007 1:39 PM (GMT -7)   

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!

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/5/2007 1:50 PM (GMT -7)   
Thanks for the info.  I am definitely going to take my husband with me. I think I am just doing the panic thing worrying what they are going to tell me.  It is what it is.  I have been trying to read up on MS in case that is what they are going to tell me.  From what I have read, MS can be a very difficult disease to diagnose and deal with and my prayers are with everyone such as your self that has been dealing with it for a length of time but it would be much better than a tumor.  I just believe a tumor would have surfaced with more symptoms a lot earlier on.  My first boyfriend died of a brain tumor and I think I worry about the worse case scenario.   In the meantime, thanks for the advice and I am looking forward to chatting with new friends that are going through some of my same symptoms.  I think the not knowing is the worst.  Difference of opinions between the doctors but at the time there were no symptoms.  Also, I only had the one area.  One radiologist said "possible lesion".  The other doctor said "possible tumor".  Just don't know..

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/5/2007 2:19 PM (GMT -7)   
I think you're right about the tumor. While there are slow growing tumors, generally you'd have more severe and obvious symptoms of that, after 2-1/2 years. Yes, not knowing, or coping with differing opinions, can be a real challenge. I'm glad you have your husband along for support.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/5/2007 3:27 PM (GMT -7)   
Wow!  Just took our 15 year old for a driving lesson.  How is that for living on the edge?!?!?!  How are you doing healthwise?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 9/5/2007 7:06 PM (GMT -7)   

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,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/5/2007 7:16 PM (GMT -7)   
Hi Doodle,
 
    I hope your appointment goes well, let us know please.  Nothing much else to add on what to expect, other than to tell you you're doing all the right things.  I'm so glad your hubby is going with you, that's always a plus to have someone else there for support. 
 
    Good luck with the driving lessons, it is an experience that's for sure! tongue
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/6/2007 3:46 PM (GMT -7)   
Hey Doodle

Just sticking my head in here a bit late to check on u'r appt? How'd it go??? It sounds like u've gotten some great advice from all the ladies here. If u have other questions or need input, be sure to post. Everyone here is great and all willing to help in any way they can. I don't think i got the chance to welcome u to the board, so WELCOME!! I hope u find it comfortable and informative as we all have. Be sure to stop in for chat on Monday's at 6:00pm (cst) each week. U'll love it!! Take care and let us know how that appt went.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/7/2007 1:57 PM (GMT -7)   
Thanks to all for the great advice and support. My appt is on Monday so I guess I will get a little more information there and see what happens. I plan on stopping in on the chat on Monday. Hope everyone has a great weekend!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/7/2007 2:14 PM (GMT -7)   
Hey Doodle

Ahhh...sorry...missed that appt date somehow. I look forward to hearing about it in chat. Take good care friend and best wishes to u for the appt. Have a great weekend u'rself!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/11/2007 7:44 AM (GMT -7)   
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...

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/11/2007 8:07 AM (GMT -7)   
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...
Sorry you forgot your list! but it sounds like it was a good visit.  I know that waiting is tough, but 2 weeks until October 1 isn't that far off.  I hope all the testing comes up with some answers for you, and some positive next steps.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/11/2007 8:14 AM (GMT -7)   
Hopefully, the two weeks will pass quickly. I appreciate all of your support and advice. Have you had an EMG before? I don't think he is using that test to diagnose MS. I know he is doing the intra-muscular one because he said it shouldn't bother me as I give myself B12 shots for pernicious anemia. Everytime I have had an MRI they have only done one of the brain. Hopefully by them including the spine it will show up something more conclusive. I am not hoping to receive a diagnosis of MS but at the same time I would like a diagnosis of what is happening with my body. If it is MS, then it is what it is and I will go from there. It is the not knowing that is getting me down...

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/11/2007 8:28 AM (GMT -7)   

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.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/11/2007 8:58 AM (GMT -7)   
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.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/11/2007 9:18 AM (GMT -7)   
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.
Yeah, I always have a dozen questions I should have asked, when I leave the doctor, too!  eyes  
 
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.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/11/2007 10:13 AM (GMT -7)   
I walked on my toes, on my heels, heel to toe. My balance was off on the heel to toe and I stumbled. My reflexes were described by him as very active. He asked me were they always that way (which they haven't). He did the stick up my legs. That sort of thing. Vision was okay. Still somewhat blurry with my glasses but not painful as in a few weeks back with eye movement. Constipation is definitely going on. Itching is still occurring. I actually had the leg jerk thing while he was doing the exam. I have had the pain around my waist in the past like I had on pants that were too tight but it is not occuring now. Maybe like you said, more will show up with the MRI. I have had the blood tests done that he ran yesterday when I was originally being diagnosed. Nothing showed on the blood tests to rule out something systemic. I showed him my skinned knee from tripping yet again on apparently an air pocket :-)

doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/12/2007 8:43 AM (GMT -7)   
Got my blood test results. Everything was fine there...no lupus, lyme's disease, sexually transmitted (my husband was very excited about this one..hehehehe) B12 looked good. Thyroid looked good. Next in line is the MRI of the spine and brain with and without contrast and the EMG.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/13/2007 7:48 PM (GMT -7)   
Hey Doodle

Just wanted to say i'm glad to hear all u'r blood work was clear...esp that std test!! ;)) When i was beginning my journey here i too had the blood work done and, by way of a prob with a blood transfusio, was told i may have a kinda rare disorder that is like 3rd cousin to AIDS. Well eventually i was tested over again and found to NOT have that...my husband was THRILLED!! hahahaha

I'm thinking of u during u'r mri's and emg and praying for something revealing for u. I do hope it's not ms, but i also hope u get some answers as to what it is. Take good care and let us know how it goes and how u are.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


kimmerz
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/19/2007 10:16 AM (GMT -7)   
Hi Doodle!
I am very new here. If interested, you can read my original post to see what my symptoms are. I just wanted to chime in here and let you know I have had three EMG's, at different times. Legs and arms. They can be a bit uncomfortable, the trick is to NOT tighten up your muscles during the procedure set up. This will help. Of course, that's hard if you are nervous. I see my new neuro next Monday, and keeping a list of symptoms and a daily journal of how I feel. Hopefully, I won't forget them! For things like that, I usually put them in my handbag or my car the night before.

Welcome to the board. So far, everyone has been so very nice and informative. I, for one, am very glad to have found this board.

Kimmers

doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/19/2007 4:25 PM (GMT -7)   
Glad to hear from you!  I wish you much luck on your appointment on Monday.  Thanks for the insight on the EMG.  Wow!  Three of them???  Were they informative for the doctor?  So far he hasn't mentioned a repeat of the spinal tap from three years ago but I expect that will be coming.
 
The memory thing is the pits....I forgot my daughter's senior page verification today.  I even set a reminder on my iphone but apparently forgot to hit save and it didn't take.  Jeez....tingling in three of my fingers on right hand and both feet.  Driving me nuts!  Went to the chiropractor for an adjustment hoping it was just a pinched nerve.
 
Thanks again and welcome to the forum. I am a newbie as well so it is great to get all the help and new friendship.

calicorosie
Regular Member


Date Joined Aug 2007
Total Posts : 48
   Posted 9/24/2007 10:51 PM (GMT -7)   
Doodle
Just wanted to say hi. I am new here also, no diagnosis of anything yet. I'm still at the earliest stages of getting tests done. Your symptoms sound so similar to mine.I do find it is a comfort to come here and read about people who have the same symptoms.
All the best to you
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