Please Help Gollie With Question or Info

[gollie]

Hi All : Any assistance in the matters below would be great..
I have researched over and over, and now feel the need to hear form
all of you. Before my nero appt 3/11. Please Comment if you Can.

About 2 years ago I started to get slight blurring in my eyes it looks like I am
underwater and everything is wavy looking.  At that moment I Will feel the top left
part of my lip start to get tingling then the tong will go numb. Then I get an overall
body feeling that I will fall if I try to move or walk. I will just stand still and hold onto
something until it passes after about a minute or minute and a half. Then I'm fine.

This will go on threw out the day maybe 5 to 6 times per day and will sometimes
last 3 to maybe 6 days and then it disappears for about a month and comes back
a month or so later. I will have it again for a few days.

After about the third episode of this, I started to get a new symptom with it. After
all of the above things would happen, my upper legs would get a very strange sensation
in them almost a weakness feeling. My legs did not feel like they would hold me up
for long, but never actually give out on me either. At the same time I notice the tingling
in my lip started to change sides sometimes.

As time went on with these episodes, I started to notice that: the time in between episodes
would get to be about 2 to 3 months apart. But I now have the Tingling on and off all the time
in different parts of my face mostly right. And my tong will still go numb on and off a few times
a week. It just seem like while I'm in between the major episodes now, I have been left with
these 2 residual symptoms that just don't go away anymore. And tingling that moves
around the whole face more on right side.

There is never any harsh types of pain involved with all this.

I do not know if the following symptom is involved with the above episodes but I will list
it anyway, as it has just started in the past year.
I have developed some kind of muscle or nerve twitch inside my left ear. It is on and
off and last up to an hour at a time. It drives me crazy. I can feel the movement inside
my ear and head and it also causes irritating clicking noises.T his just happens a few
times a month or so.

Again no types of real pain involved.


Now in July 07 I started to get a new kind of episode:

I started to get throbbing sharp pain in my head; right side near ear but deeper
inside head. (about three to four quick sharp jabs of bad pain in a row, which
makes me think, throbbing pain??) This would happen on and off threw out the
day for about three days. Then It completely stopped!!!

Then In Sept 07 I got a second attack of it. Identical to the first, except on the
third day of it, the pain hit so very very bad that my vision just went completely
black for a minute and I was doubled over a chair holding on till the pain subsided.
That is when I got sent to the hospital to be checked for meningitis, with an LP.
(no meningitis and they neglected to check LP for anything else. And that is when
the search for MS started

On the fourth day once again the pain was completely gone. It has not returned
as of yet. (I am so afraid of it happening again I thought I was going to die)

Now I have several other symptoms of ms, but these are the top 2 things that scare me
the most. I have done a ton-of reading here and have come to wonder if these above types
of attacks could be from ON and TN. I have not had a chance to talk to my Nero about
this as we have been so busy with testing and the Dx of MS. And getting on Copaxone

I have my next apt with him on 3/11 not far away, and want to discuss the above with
him as well at the horrible fatigue.

My vep was abnormal bilaterally
BAER was abnormal
SOMATOSENSORY Was abnormal (upper and lower)
EEG normal with noted slowing
Mri Showed 3 or 4 lesions and several small foci

My first question to all:

1. Did I do a good description on the above symptoms?. I mean, good enough to
print and take to my nero?

2. With the abnormal VEP and the above pain symptoms how possible is it that
it could be ON ? And if so should I be going to a specialist. And is there meds for this?

3. On the first type of episodes above, Dose this sound like it could be TN? and if it
turns out to be TN Is it possible that the first type of episode I started with has evolved
into the second type of episode and could stem from the same condition? I mean could
they both be comming from the same thing?Or 2 different Things.? Such as the ON and
TN? IS there further testing involved for TN? Or would my nero just prescribe something?

4. I have seen others on here that have meds, for the fatigue, I could use a few different
drug names for that, in case my insurance doesn't cover certain ones.
I am sorry for such a long post and so many questions, I just want to be able to get
the most out of my next visit with nero. We have so little time with them. I could really
use all the answers, comments, and personal eperiences , that anyone could provide
on the ON and TN.

                                                                 All My Best Gollie

[gollie]

Freesprit:
Hello and nice to meet you!
Thank you for your posted comment and support!
I will be putting all advice and support to good use!
Keep in touch!

Cz Thanks for your post,    Im waitting to hear how your
Doc appointment went!                              


                                              All My Best Gollie

[cz1970]

Sounds like TN to me too. ON I dont know though. My ON was extremely painful then my vision went AFTER the pain was over 3 days later.  MD told me ON doesnt come and go like that either.  I do however get an aura before a migraine and during for a while that is exactly like looking up from under water. Perfect description.  Migraines are related to nerves as well so???? But Trigeminal Neuralgia is what the rest sounds like it.  Good luck!

cz

[gollie]

Hi there Sally

It so nice to meet you!  Thank You so much for you comments.
This is exactly the type of feed back that I am looking for.

Im sorry I should have mentioned, that I was Dx's with MS about
3 weeks ago.  I see I did not make that quite clear above.  It just
got so hectic with all the testing and Dx ing,  and getting the
copaxone set up, (which I will be starting this week end).
I have not had a chance to talk with my neuro about the above episodes.

I brought him a symptom  list at my second appointment with about
8 different ones listed.  (tho I didn not inclued time lines).  And he actually
sat there and read it.   He said Oh this is very good can I keep it for my file? lol
I was relieved to hear that.

I am glad that I have been going over the site posts here, I may never
have made those connections, with TN and ON  and the 2 above episodes.
that is what made me think to do a time line for them.

I think I should compact it abit as well. (just not sure yet what to
put in or take out).  I have also spent alot of time off site reading
on TN and ON. But in the end it is nice to hear from others here, it
brings things to your attention, that internet articles just cant do.

Just want to feel validated and at least abit educated when
I talk to the nero about this stuff. As he did tell me he wants
me to take a very active roll in my care.

                                                             Thank You Sally
                                                           All My Best Gollie

[Freespirit24]

I do not  feel qualified to comment on the symptoms except to say they do sound like MS symptoms of ON and TN. I agree with Sally, your descriptions are clear and understandable. I would make them as short and to the point as possible and say here is my time line of symptoms and when they occurred and hand it to him so at a glance he can get the idea.

Some Doctors are appreciative of patients doing this some do not want anything from you I have found but I still think it is a good idea.

I think you have enough evidence from tests etc to prove MS personally but i am not a Doctor so do not know what else is required.

I know nothing about the meds for fatigue as i do not take any because I am not working and my day is my own so I nap when I need to.

I wish you all the best and will be waiting to hear how you got on.

Sorry i was not more helpful but I wanted to encourage you.

Hugs

Sarah

[Super_sally888]

Hi Gollie,

I'm no expert, and haven't hit gold on a neuro yet, but here's my take. Others may say it better or have other suggestions.

Your descriptions are good, to print out and take, though I would keep it all as concise as possible to increase the chance of your doctor reading it. Maybe point form and approx date (maybe like Sept 07 - describe)

What you describe definitely sounds like ON and TN.  Each of these individually is a possible indicator of MS.  Both together I would think even more likely that it is MS.  Particularly you are describing a remitting relapsing pattern.

If the neuro refuses to consider or diagnose MS based on your clinical picture (assuming he's ruled out other things, and sounds like he has) I would run to a new doctor.  You also have abnormal tests for the ones that are looked for in MS, and lesions on MRI.  I don't know how much clearer it could be.  If it walks like a dog and sounds like a dog, most likely it is a dog.  Hey, I can't diagnose, but what you describe does sound like MS to me.  

I think some of the guys here mentioned a drug provigil (Modafinil, is the drug name) which is used off label to assist with fatigue in MS.    You would also want to get on one of the disease modifying drugs asap.

Best wishes & do let us know how your appoiintment goes.

Sally

[gollie]

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