First Neuro Appt. Thursday--?? help

[dkdean]

I have another post going (New--32y/o) that details my history (ie. the last 2 weeks!).  My first appt with the neuro is tomorrow.  She saw me/did a quick examination in the ER 1.5 weeks ago when the TIA was diagnosed.  Since I have continued to have visual 'disturbances' (all day) and off/on numbness (right pinkie, right side of right palm, right forearm--then tongue today), I am being seen.  I don't know what it is that is going on with my body--but just that something is not right...not sure if I need to adjust what 'normal' is or if this will get getter or what.  I am not looking for a diagnosis tomorrow, but am wondering what type of questions to ask.  I will be asking detailed questions re:MRI and I am supposed to be getting another MRI (when?) with/without contrast (and will ask about it being a more detailed 'MS' scan).  I'd love some ideas about what types of questions to ask...It sounds as though you will all be a great resource for this--whether the eventual diagnosis is MS or not.

Thanks,
K

[PastorDan]

I've heard the "one a decade" thing from multiple neuros, too.  Maybe it's a Central Ohio old wives' tale.  Excuse me: old neuros' tale.

[Udkas]

Hi there,
it does sound like your neurologist has gone to great lengths to explain why she thinks it's the 'silent type of migraine', and from what Quix has said on this forum about symptoms coming and then stopping and coming it prob sounds more migraine than MS but you can have both and some people's MS presents like migraine, I guess we are all different.

I would be exploring all avenues and it never hurts to get a second opinion.  I'm like Ess you shouldn't have lesions at your age, unless of cause they are from the migraines but I don't know where they get the theory one lesion a decade (that's bollocks) have they give you a reason for the lesions.

I get migraines without the headache and I notice my symptoms are worse leading up to the time of my period, I am convinced most of my symptoms are migraine but I have also had TM, sometimes I think I am having a stroke but I am like Ren, my symptoms cross over so much I find it hard to work out which is migraine and which is from my Transverse myelitis, so I just keep going back to my neuro for checkups and reassurance that I am not getting worse..lol

Goodluck with it all, Udkas

[essdipity]

I'm far from an expert, yet I've never heard such claptrap as one lesion per decade. Where in the world did they get that one?

You are only 32. You should have NO lesions, so you are not ahead of the game. When lesions from 'aging' appear, they cause no symptoms. You do have symptoms, or you wouldn't have had the MRI. Migraines can produce lesions, yet these are tiny. Not sure about the sizes you have. You also didn't say whether your full neuro exam was normal.

It does sound as if you were able to ask a lot of questions, all to the good. You got pretty good explanations as well. Migraines without headaches are really not rare, and can cause some bad symptoms. However, this type of thing seems to be way over-diagnosed, from what I've read here.

To be considered an MS flare, symptoms must last at least 24 hours (some neuros say 48). These do not have to be constant, non-stop, but do have to be 'most of the time.' There is no requirement of 2 1/2 weeks. Flares, considered individually, must be separated by at least one month. In my experience, symptoms can change and morph somewhat during the same flare. I think of it as a short circuit--sometimes on, sometimes partly on, sometimes stronger, etc.

Amitrityline often helps a lot, all to the good.

I really don't know whether or not you have MS, and am hoping you don't. But in your shoes I'd be investigating to find other neuros in the area, based on 'you never know.'

Sending good wishes,
ess

[dkdean]

The lesions-that's the part I am still not sure with....the neuro said that they anticipate 1 lesion per decade.  Therefore I 'should/could' have 4 lesions (age 32) and with 'only' 2 that I currently have I am 'ahead of the game'.  They didn't give me specifics on the lesions--only that one is in the left frontal lobe and one is in the temporal lobe.  I could see them on the MRI.  They said with the numbness and visual changes I should see them in different parts of the brain/MRI.  I am getting a copy of the reports mailed to me and might have more information then.

The part that still gets me is that I've had visual changes/aura/wiggly vision for the last 3 weeks (started before the 'event') and it's been constant.  That doesn't seem to go with a migraine.  But, it seems like (at this point) nothing completely goes with any diagnosis.  I am hoping that the Elavil makes a difference and I'm glad there is a plan, but I have a feeling the the straightforward migraine diagnosis is not going to stand the test of time--maybe that's part of this, but not all?  Curious to see what the Neuro-Opth sees on the 19th.  The neuro yesterday said she didn't think I have optic neuritis because I am able to see...and she could see into my eyes.  I wish there were some shrugging emotions here....I feel that's what I have been doing a lot the last few weeks!!!!

Trying to be cautiously optimistic--that would be easier if I could see straight!!

Thanks again for all your help!
Kim

[rendean]

Kim,
I'm glad the neuro is trying something to alleviate your symptoms. I am equally gald that the neuro is willing to try to find other causes for your symptoms should the Elavil (amtriptyline) not work.

I , too, was told I had acephalic migraines. My symptoms were very similar to yours. I had visual auras (shimmering lights) with only 2 of my migraines. Most do not produce a horrible headache, it's the numbness of my left arm and the nausea that are disturbing.

After 4 years of continuing symptoms and no relief from ANY of the migraine meds, I was finally diagnosed with MS in ADDITION to the migraines.

I guess my point is, if the meds don't work don't be afraid to question the migraine diagnosis. Make sure they explore all avenues before settling on the migraine diagnosis which has neurological symptoms.  Yes, I think I do have acephalic migraines in addition to the MS and some days it's hard to tell the difference between the two.

Wishing you luck and hoping your neuro is right!
Ren

[PastorDan]

Gotta ask -- dkdean, rendean...  No relation?  ;>D

We will pray that whatever you have, the doc nails it, and treats it effectively.

Curious: You said your lesions are in the wrong place for your symptoms.  What kind/size etc. of lesions do you have and where, do you know?

Peace.

[dkdean]

So, the 'diagnosis' from the appt today was that I am having a migraine (silent--no headache).  Some key points:
1-where my lesions are wouldn't be causing the types of symptoms I am currently experiencing
2-MS symptoms are typically sudden--ie. no numbing, then not, then numb again--it is and stays that way for 2+weeks
3-TIA symptoms go away within 24 hours--completely--no continuing effects--therefore, I did not have a TIA.
4-Continued symptoms could mean a true stroke w/damage, but my MRI doesn't show a stroke.
5-arterial migraines can cause all of my symptoms...since they are within the brain and not on the surface, they do not cause headache pain, but can cause confusion, loss of speech, numbness, halo/aura/visual problems for some time. Sometimes they start with one symptom and move into others; mine is odd in that it's been 2 weeks of symptoms--kinda like a bell curve--vision stuff, the event, more vision and residual numbness
6-MRI with/without contrast in 6 months to compare
7-Starting on Amitriptyline (Ellevil) at night--it's an anti-depressent that is approved to treat migraines. It is intended to be a proactive approach--so, taken daily. Can cause sleepiness, so I take it at bedtime. We will see how I feel in two weeks, then up the dose if I am not feeling better--continue to up for a few weeks (if needed)--then change meds....if those don't work then we will look at other causes.
So, this forum had already helped with this diagnosis :)  Good work!!  Still trying to wrap my mind around a migraine without a headache that can cause my symptoms, but certainly hoping we're on the right track.  Thank you for all of your help and I wish you all the best on your journeys!!!!!
Kim

[dkdean]

I will not mention my internet research or elude to any diagnosis!!  Although, the drs were the ones that did bring up MS, TIA, or stronger stroke when I first presented--I had never even thought of MS until they mentioned it (I felt like I was having a stroke).  

I'll keep you all posted.  I wasn't really a fan of this Neuro when she saw me at the ER, but she was able to get me in soon since I could be considered a "current patient".  I'm curious to see what my impression is today....that will help guide my thinking for next steps.  The neuro who has gotten great reviews by several close friends isn't in my insurance, so I need to keep searching.

Thanks again,
Kim

[rendean]

Nothing to add but support. Ess gave you the 2 most important links in the health pages and the sage advice NOT to mention the internet or any thoughts of what you think your diagnosis is.

Sending good thoughts and wishes your way,
Ren

[dkdean]

Thank you!!

[essdipity]

Hi, K. Here are 2 entries in our Health Pages which should be of interest---

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

You may not have time to ask a lot of questions if your neuro exam is thorough. Try just to be prepared with your health history, and above all, don't mention the internet or what you suspect is wrong.

Let us know how your appt. goes.

Good luck,
ess