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Multiple Sclerosis
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Posted 7/21/2006 3:34 PM (GMT 0)

Hey Everyone

Well no update from me for awhile because there's been nothing to tell. I had more tests done Tues and tho i haven't talked with the doc yet, his nurse told me all the results were fine. I had Visual Evoked Potentials, Auditory Evoked Potentials and an MRI of the blood vessels in my head. All is normal. I'm VERY happy to hear that...especially about the blood vessels...but that leaves me with no answers and ever evolving symptoms. I will have an appt set for me next week and should be able to address the symptoms that are still with me and the few new ones i've found. I guess the place i stand now is that i don't know what to do next. Seems that all the tests they can do (short of an LP) have been done....all normal. What else is there to do but sit and see these things continue on and wait for things to get so bad that they either have to give me some kind of treatment that will make it disappear for a time or cover it up. That sounds like a lose lose position to me. Nah, I'm not depressed or anything like that...i just don't know where to go from here. What more can be done or tried. I mean if there's no indication on any test of anything wrong...yet i have all these funky things happening and evolving, what else is there to do? Where do i go from here? I suppose this is much more a rambling vent than i intended it to be, but even still, if u have any suggestions of questions, next steps, etc, please let me know. At this point all i can think to do now is to ignore this unless it becomes something i can't ignore. Thanks for reading everyone.

rhonda

Posted 7/21/2006 10:51 PM (GMT 0)
Not sure if I can be of any help but what type of symptoms are you having?

I'm in the same boat as far as labs show nothing. I had abnormal MRI but negative LP. If this is something that you are determined that could possibly be caused from MS then by all means ask the doctor if you can get a spinal tap to rule this out completely.

If pain or joint problems seem to be the major issue then Rheumologist would be helpful.

PCP should be able to tell you what specialist to see based on some of the symptoms.
If you are this frustrated then obviously the symptoms cannot be ignored or forgotten, and if they can then it wasn't probably anything of concern usually. We all need to vent, I try to vent atleast once a day lol usually to a 8 year old that looks at me like I'm nuts and then asks when I will buy him the new gameboy that all his friends have.....

You know with all the stuff I've had done, I've never had a EEG or any type of vision test done.

From what doctors have told me is sometimes many autoimmune disorders do not show up in blood for years even though symptoms can be definitely bothersome. Even though this has to be the most frustrating thing about the "wait and see what it comes out to be" game.

Sorry, that I'm not much help but hopefully something will show abnormal as bad as that sounds. I know you are looking for validation for feeling like crap. My grandpa was told by several doctors he was healthy as a horse, He always said " I'm the sickest healthiest person" then several months later he passed away from cancer that was never detected. Of course, that is the extreme end I'm sure, and definitely not trying to scare anyone just trying to state that not everything gets detected or it may be detected several years after the first set of symptoms we have.....

Hope you do start feeling a little better!
Ginger
Posted 7/22/2006 1:10 AM (GMT 0)
Hey Ginger

Thanks for u'r support and help and Welcome to the board! No, this isn't something i can put to bed yet. I've had all (i think) the normal tests that are performed in effort to determine a yes or no on ms or other similar type diseases/disorders. MRI of cerv spine twice, one of brain. All normal. Of course the tests outlined above as well as the heel to toe walk, nose touching with eyes closed, standing with eyes closed. All sorts of taps and bangs on my parts and pieces...apparently normal. All sorts of blood work as well. Ruled out Lyme, B-12, yada, yada, yada... All these tests have been normal/neg.

As far as the symptoms go, pretty much a myriad of things. Starting with numbness all over in patches, dizziness like the room is spinning or light headedness at times, JERKING!!! Fingers/arms/hands/legs/feet/JAW/whole body!!! Vibration in the inside right leg, inside right foot, palms of hands, across stomach (most recently). This awful, painful “thing” in my chest where I felt it squeeze and hurt and it was hard to breath. This strange thing with my right eye that my eye doc declared was optic migraines…tho I wonder. I guess the list goes on and on here too. :(

To try to answer some of u'r questions, no i don't have any joint pain and no LP. The LP is still up in the air, but i'm not planning it unless my doc decides it's absolutely necessary...and i hope he doesn't since i've heard bad things about them. But...if it came down to that to determine what's goin on...i'd do it. I don't want to find anything on these tests, but, yes, to know what's goin on would certainly be a relief.

Again, welcome and thanks for u'r input and help!

rhonda

Post Edited (rhondab) : 7/22/2006 8:27:22 AM (GMT-6)

Posted 7/22/2006 3:15 AM (GMT 0)
Hi Rhonda,

I was wondering how your evoked potentials tests turned out and while I'm happy that everything is ok, I'm sure it's frustrating for you not to have any answers yet.

When you go in next week for your appointment you could ask the doc where do we go from here since all tests were normal. They may want to continue to wait and see and rerun the tests after a period of time to see if anything does show up or refer you to a different specialist.

I totally understand how you feel, being in limbo really isn't much fun sad After five years I got to the point where I really didn't care what the dx was just make me feel better! While it's nice to have validation and get a dx if you can treat the symptoms at this point and start to feel better the waiting might be more tolerable.

Good luck at your appointment and I hope you get some of your symptoms addressed, let us know what happens.

Kimber
Posted 7/22/2006 4:56 AM (GMT 0)

Hi Rhonda,

Yours is the first post I have read and replied to on this site.  I just wanted you to know that you are not alone in what you are going through. In fact, if I didn't know better, I could have sworn that I wrote your post myself. 

I've had ever worsening symptoms similar to yours for years, including extreme fatigue and tingling and numbness in my arms, hands, legs, feet, face, and lower lip and chin.  I've had severe headaches, cognitive problems such as slow word recall and substituting the wrong word totally, forgetfulness, and confusion.  I've also had ringing in both ears, vision problems, and hot spots on my legs. about two months ago, I suddenly developed tremors, along with even more extreme fatigue, painful muscle spasms, slurred speech, and then noticed that I no longer sweat, even in the most extreme heat.

I consulted a neurologist several weeks ago, and during the neuro exam, the doctor noted lateral nystagmus, dysarthria, slow reflex response in my ankles, and a present Babinski reflex in my left foot.  The doctor strongly suspected MS and sent me for testing.

I've had the usual blood tests ruling out RA, B12 deficiency, Lyme disease, diabetes, etc.  I had three evoked potential tests, and an MRI to try to diagnose whatever is going on with me.  All except one of the sensory evoked potentials tests came back normal.  When the results came back, the neurologist had the nurse call me and tell me that everything was normal, I didn't have MS, and there was nothing else he could do and I didn't need to see him again. End of conversation.  No mention as to any follow-up for my symptoms, no mention of the abnormal evoked potential in my left leg or present Babinski reflex or what they might mean, no help at all.

Meanwhile, I feel horrible most of the time, can barely function enough to go to work or even get out of bed.  I sent my primary care physician a list of these and other symptoms and asked for help, but he didn't even respond other than to schedule me a second opinion with another neurologist.  And just what good is that going to do?

I'm about at the end of my rope!  I just want to feel better so I can live my life.

So, while I can't help you or give you any answers, I can suffer along with you and pray that we both get help and answers soon.

Big hugs,

Lisa

Post Edited (Shashi) : 7/22/2006 10:29:56 AM (GMT-6)

Posted 7/22/2006 6:30 AM (GMT 0)
Hey Kimber!

Yes, the tests took a long time to happen. It was scheduled in May and only just happened! That was so all could be done in one day since i live a few hours away from the hospital. That was very nice of them to consider for my sake.

I do plan to follow u'r advice and see if he can map out his plan of care for me. I'm hoping he's planning on me continueing to see him periodically as i've seen many posts here where the doc's simply say 'that's all i can do'. However; with this doc i suspect that won't be the case. I'm also taking my mri films and following some very good advice from shellypoo. I'm gonna ask him to look at them and see what he thinks. U see, my local neuro has never looked at them...he relied on the radiologists report that had been faxed to him...per that doc during a discussion of the mri report! I'm not about to let this go...tho it'd be nice to do...i simply intend to paddle along and try to navigate this with as much control as i can maintain.

On the symptoms and treatment...my local neuro dx me sometime back with restless leg symdrome (tho it should be called restless BODY symdrome!) and i'm using klonopin (as i HAVE to) for that and i'm also on cymbalta for the other junk, which is helping, but somehow also seems worse. Make sense? I guess i'm saying that the cymbalta helped to settle them down, but i've seen them worsen at times (flare??) while on it. It makes me wonder how much worse they'd all be if not on that.  A long time ago i was dx with ibs and of course thought the doc was nuts. Now i suspect that may have been a beginning to this. Funny how u put pieces together long after u recieve those pieces. Thanks so much for following and helping me!! As i've always found, u'r a great support and help.

Hey Lisa!

So nice to see u here and Welcome! I'm glad u decided to post. I'm goin to paste some of u'r comments here so i can address them and remember them as i do!

"I've had ever worsening symptoms similar to yours for years, including extreme fatigue and tingling and numbness in my arms, hands, legs, feet, face, and lower lip and chin. I've had severe headaches, cognitive problems such as slow word recall and substituting the wrong word totally, forgetfulness, and confusion. I've also had ringing in both ears, vision problems, and hot spots on my legs. about two months ago, I suddenly developed tremors, along with even more extreme fatigue, painful muscle spasms, slurred speech, and then noticed that I no longer sweat, even in the most extreme heat."

I too have HUGE probs with my memory...hence the copy/paste thing...and have seen it getting worse and worse in the last few months. The probs with my speech are that i can't get the word out or i think of the correct word and say another word. Lately i even say one of the words in the sentence, but in the wrong place. Gets really frustrating. Also, i'm with u on the jerking in the face! My lips, chin and cheeks and even eyes jump and jerk. The other day i sneared at a curb store clerk...but was actually only looking at her...my face did it without me!! The kind of headache i have is only in my right eye...the optic migraine eye! LOTS of pain in my legs..some days really bad, other days nothing at all. Wobbly legs...like jello. They feel soft in the knees. I too have the muscle spasms...i think. It feels like a tightness and hurts..and in my arms and hands it feels like it's pulling and hurts! Unfortunately i still sweat! haha

Seems as tho we are in the same boat as many here and other places...all these similar symptoms and no answers. Forutely i have been able to find two good neuro's...one local and one a few hours away who i'll be seeing next week. I'm really sorry u've had such a rotten experience with all this...as u said...u'r not alone. I feel u'r pain as well. I hope u'r pcp can get u some relief for u'r symptoms and u'll be much better soon. I"m glad u found us and posted...and hope to hear more from u in the future. I'd love to know how u'r pcp deals with all the info u've provided him/her. Take good care and thank u for posting!

rhonda

Post Edited (rhondab) : 7/22/2006 8:57:47 AM (GMT-6)

Posted 7/23/2006 5:23 PM (GMT 0)
My mom is on cymbalta...she actually said the exact same thing as you stated. She said it does help with the achniess and fatigue somewhat but also thinks for some reason she is getting worse....I know that doesn't make a lot of sense but I can understand what ya'll mean by that. She tried to get off of it once and I begged her to get back on it because she was a tiger....she had dizzy spells after just missing the first dose and was going numb in parts. She had no choice but to continue, even when the doctor gradually took her off, she did the same thing.
I also take Klonipin---good stuff for RLS or any type of pain in legs.

I agree with Shellypoo, your doctor should most defintely look at your MRI results himself. People have different views on differen't things. I wonder if most of the doctors go by just what the radiologist says.

Everyone will have horror stories about some type of procedure, and if you continue to read about it. It would stay you out of everything, I promise. I had a problem with my LP but I don't think that's typical. I wasn't told that I needed to lay flat on my back after the test or needed to rest for atleast 24-48 hours so I was at the mall the next morning :) That's when the problem started, but it wasn't life threatening at all and the actual procedure didn't bother me at all. Just the freaking headaches which again probably wouldn't have been so severe if I was told what to do afterwards.

This is your life, your body. You have to be your best advocate. You want to know what's going on with it and that's the least that you should get from the doctors. I recommend getting that done to rule this out. You have went this far, finish it!

Good luck girl!
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