What do you think

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Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/28/2006 11:24 AM (GMT -7)   
When doctors can't figure out what the problem is...does that mean its something big and scary and hasn't manifested yet or when they can't figure it out does that mean its nothing that big, just a little something throwing everything else off. Maybe not enough testing????????  
 
 
I cant take this anymore....i just wanna give up. I dont' feel good! It seems neurological but I've had an mri that came back normal.  They found a small hole in my heart (pfo) that one doctor is saying is causing my vision problems (aura) but no other doctors go for it. Please help me...Im ready to give up. I can't take this....it all came out of nowhere...what did i do wrong, was it something I ate...something I did...why me

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/28/2006 11:42 AM (GMT -7)   
Hey Neurogurl

Awww...don't beat u'rself up like this. It's nothing u did or didn't do or ate or anything else like that. It may be something or it may be nothing, but that will all be revealed in time. Unfortunately with ms and many other neurological probs, it just takes time to manifest. U are far from alone. I'm here with u as are many others here in limbo. The very best thing u can do for u'rself is to let the docs help u with the symptoms if needed. If u'r feeling bad and it's so bad as to be affecting u'r daily life, then by all means talk to u'r doc about it. Don't wait in pain or suffer needlessly. No, i'm not saying to get a pill for anything that comes up...but do care for u'rself if needed. Otherwise, the best thing u can do is to try to live u'r life along with this for now. Believe me, it's difficult to do at times, but other times u find u'r not even thinking of this ms stuff at all!! The more u focus on u'r own real life and u'r daily activities the less u focus on this. Don't give up...continue to see the docs as needed and to take u'r meds and keep up with u'r journal, but don't LIVE this. That's how u deal with not knowing and the anxiety that can build. I hope u'll feel better and this will pass for u. Don't feel alone or that u can't go on with this. U owe it to u'rself and u'r family to persue this and we'll be right here to help u along.

rhonda

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 12/28/2006 12:11 PM (GMT -7)   
Neurogirl,
I'm sorry you are miserable and don't know what's causing it!  The docs always say things will either get worst or they will get better, it's just a waiting game.  And it doesn't seem to get better once you get a diagnosis, symptoms come up that they scratch their heads about and don't know what to do for you either.....wouldn't it be nice to flip a switch and it would all go away?
 
Big hugs and I certainly hope all is better for you soon! :-)
Michelle ><>
 
The choices you make today will determine your tomorrow.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/28/2006 1:51 PM (GMT -7)   
Neurogurl said...
When doctors can't figure out what the problem is...does that mean its something big and scary and hasn't manifested yet or when they can't figure it out does that mean its nothing that big, just a little something throwing everything else off. Maybe not enough testing????????  
 
 
I cant take this anymore....i just wanna give up. I dont' feel good! It seems neurological but I've had an mri that came back normal.  They found a small hole in my heart (pfo) that one doctor is saying is causing my vision problems (aura) but no other doctors go for it. Please help me...Im ready to give up. I can't take this....it all came out of nowhere...what did i do wrong, was it something I ate...something I did...why me
If this is just a vent, well, then, I'm really sorry you're feeling so awful and down, and I wish there was something I could do to make it better...but there isn't.  Just know that we've all felt crummy like this.  I hope you feel better soon.
 
 
If you want something more, then here's this:  When doctors can't figure out what the problem is, that should not to be taken to mean that either "it's something big and scary", or "that it's nothing that's big and scary".  It only means this:  There is not enough evidence...yet...to give "it" a name, or a treatment plan. 
 
Tests are coming back negative for neurological problems, so maybe it's not neurological.  You say that "no other doctors go for (the hole in your heart causing vision problems)".  Have you seen more than one cardiologist? Was it a cardiologist that said you had the hole in your heart, and that it was causing vision problems?  You might go back to the doctor who told you that you had that hole, and that it was causing vision problems, and ask him this: "OK, so I have a hole in my heart and it's causing vision problems; what do I need to do about this, so they will go away, and the hole in my heart will be repaired?"
 
Other possibilities: The problem is metabolic...diabetes, thyroid problems, something like that. You'd need to be seeing a rheumatologist.  The link I've provide you has a whole host of diseases that "look like" (mimic) MS...you might spend some time reading up on all of those and see if there is anything that sounds familiar.
 
But basically, if I were you, and I'd seen a doctor who told me I had a hole in my heart, and that was causing vision problems, I'd be camping out on his doorstep until he told me more about my condition, it's risks, its treatments, what outcomes I could expect, etc.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/28/2006 2:02 PM (GMT -7)   
Hi Guys...thanks so much for your support.

Rhonda..I can't tell you how scared I am. I am now realizing that I'm not the only one going thru this but I can't stop thinking about it. I try hard not to focus on it...especially the vision disturbances. But its sooo hard. The doctors they scare me. I just want to be normal. To feel normal. And healthy. I just started my career. Im so scared to die. I don't want to die.

And Michelle, Thank you also for caring. I wish there was a switch to make it all go away. Just the blink of an eye. If we get a second chance at life after this one, I pray to God i'm healthy. Before I developed these symptoms I never realized how good I really had it. How much I took things for granted. I would do anything to go back to those days. Before all of this started


Can't stop crying

Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 12/28/2006 2:25 PM (GMT -7)   
Neurogurl,  Yes, don't beat yourself up over this, its hard to say, but I do beat myself up too.  I have had weird crawling, tingling, and cold sensations throughout my entire body for 6 years now.
 
I had a normal brain MRI in April, and a c-spine in Sept, which the only thing found was a bulging disk.  I just went Friday to see a new neuro, she sent me for bloodwork, I had it done Tuesday, Wednesday, the lab called and said that they needed more blood, they took 9 tubes on Tuesday, and yesterday 3 more.
 
She is testing me for connective tissue disease, and re-doing my EBV titres because when this all started 6 years ago the only thing that came back was a reactivated EBV infection.
 
I am scared to death, and my PCP isn't coming in til the Jan 2, the neuro won't be in until Jan 8th.  Hopefully I can get the results from my PCP on Tuesday.
 
If all the bloodwork comes back normal she wants to do a LP.  So, your not alone.  I am bothered everyday by these strange, weird sensations, it drives me NUTS!!!!
 
I started taking an antidepressant and it made everything worse.  The neuro gave me Metanx to take, she said that she's going to make these sensations go away, well, its been 6 days of taking it, and it has lessened a bit, but she said it can take weeks.
 
The Metanx is supposed to be better than B-12 injections, she said alot of people have these feelings and she gave them this to take and it has helped.
 
I will say a prayer for you also, I know how frustrating it can be.
 
Take care!!!  Jen yeah

Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 12/28/2006 2:49 PM (GMT -7)   
NeuroGurl -
I'm just starting this rollercoaster ride, but I just want to say, I see you are posting all over on the boards here hoping to find some answers somewhere and I can't say I don't blame you, but I think maybe you should do what uppity suggests and call that dern dr and get an answer from him/her and if he/she doesn't give you something ask for a second opinion. I made a list of everything that was funky going on with me and I mean EVERYTHING, I faxed it over to my dr's office and told the office girls that I know the dr is busy, but I would really appreciate any advice on the issues when she got a free minute. Bless my dr's heart, it took her a couple days to get back with me, but she addressed each concern and that's when we came to the conclusion of going ahead with the LP.
If you feel something is wrong and if you're paying his/her bill, you more than have a right to have some type of answer to your concern OR be referred to talk to someone else and if he/she won't do it, call your local hospital and talk to a patient representative for a referral to one. Tell the dr EVERYTHING and say, OK where do I go from here? Start from square one and see what happens. Yes, it will be alot of the same 'ol, same 'ol, but maybe not, maybe this dr will have your answers whether they be good or not so good, but at least you will have answers.

You're in my prayers.

Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 12/28/2006 7:26 PM (GMT -7)   
Hugs to you, Neurogirl. I'm right there with you. I've been going through this since June. I've seen three neuros, the last one an MS specialist. I've had four MRIs which all came back normal. I had bloodwork which came back normal. I had EVPs, most of all of which came back normal. I had an LP which came back normal.

My family all think this is all in my head. Even my oldest son told me that just the other day. In the meantime, I have muscle cramps and spasticity, shooting nerve pains, balance problems, tremors, buzzing sensations, numbness and pain, and difficulty walking. And now, just lately, my hands are in such bad shape that I can barely type anymore.  My doctors don't know what is going on. Neither do I.

It's frustrating, isn't it. I told my husband the other day that three words which should never be in any doctor's vocabulary are "I don't know." To me, that is not an acceptable answer. We pay them to know, and if they don't know, they should keep searching until they find the answers.

Hang in there. Hopefully all of us Limbolanders will find answers soon.


Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!

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