Still waiting and wondering

[onedayatatime3]

Hi! I'm new to the forum and I have so many questions. I'd like to tell you a little about myself and my symptoms and maybe someone here can help me because no DR has been able to yet. It's been 5 years.
I'm 28 years old. About 5 years ago I began to experience the first symptoms which were numbness, weakness, trouble walking (had to use a cane and eventually a walker) falling and became bed bound for several months. More symptoms began to pop up over the coming months and years. I did begin to walk again on my own slowly although still falling periodically. The symptoms that I have to present are as follows : trouble with balance, some tripping at times, some falling (on occasion), heavy legs, numbness in hands, face and feet, heat intolerance, blurry vision, double vision, memory problems, speech problems, bladder and bowel trouble, joint/body aches, a shocking sensation that goes down my neck and sometimes down my back and other times down my arm, weakness in legs and arms, eyes hurt. Ok so I think that is everything. It's what I call my grocery list of symptoms.
My MRI's are normal. Of course that's good news, but at the same time very frustrating because I know and have friends with MS who look at me and say I think you have MS and I have a lot of the same symptoms as them. I have 3 children and to not know whether I am getting the right help or medical care is extremely irritating! The DR's look at me like I'm either A. Depressed B. Crazy or C. want to be sick. I am not an aggressive person but I have made up my mind that at my next appointment I'm going to go in and just lay it out on the table because these men and women need to know that we didn't one day wake up and ask to be sick or for our bodies to just stop working properly. I've really had some rude comments said to me.
I'd just like to have an answer. If one day I wake up and I'm "well" then I would only praise God because he would be the one to thank. Right now I just feel very stuck, very frustrated and very let down by the medical community for lack of help!
Thanks for reading!
~ taking it one day at a time~

[rendean]

Welcome to the forum! A great place to learn and ask any question you care to.
Sorry you've had to endure such a long string of symptoms with no answers.

I have one suggestion that helped me prepare for a visit to the latest neruo...the MS Tracker. It lists symptoms and lets you enter when they occur. Granted a lot of mine was done with  memory and that left a lot of blanks but if you  could tie certain events , such as a birthday or Valentine's Day to a set of symptoms, it would help give you some sort of timeline. The MS tracker is located on the right side of this page. Farther up ,near the top pf the page is a list of Health Pages (yellow icon) that contain a wealth of information.

Good luck,
Rendean

[saveone]

I would think not.  You need a doctor when you need them.  I don't think you should have to wait until your doctor gets over his surgery.  If your plumber was out and your pipes broke you wouldn't feel bad if you called another and your health is more important than your pipes.

terry

[onedayatatime3]

Thank you! Yes that is one fear I've had is that they will see me as just wanting the testing or wanting to be sick and that is so far from the truth. In fact I went the last 2-3 years and just went to my regular doctors and refused to go to anyone new no matter how things changed or got worse. I do not like the "labels" that have been placed on me. These people are not living with me nor are they me. It really is a very biased position for them to be in. I should also mention that I have extreme fatigue. I can (on a good night) sleep on an off and then will wake up and be still so exhausted which lasts all day. I have twin 3 year olds and they NEED ME, I also have an 8 year old son! So I just want to know what is going on and to me this is more than just Fibromyalgia!

I will do my best to get some of my results from whoever I can remember seeing, LOL. I have always been extremely shy and reserved once I enter into that room. I don't ask them for much just basically explain what is going on and take what they dish out. Then I leave! Most of the time more confused than when I got there.

Here is one question...If you are going to a Neurologist in a large practice and he is out because he himself is having surgery and several people have suggested a different Neuro is it wrong or unethical to switch within the practice? I just feel very awkward about it.

THANKS!!!
~taking it one day at a time~

[saveone]

First let me add my welcome.

Second I just want to say WOW that's some doctors you have ran into.  I bet their last name was RUDE.

Third I have only been at this a short while and I become frustrated.  I think of all of the ppl on here who have gone years, yourself included, not knowing and fighting for every answer they get and I cannot imagine the inner strength you must have.

Fourth  gather as much of your medical history as you can, tests, lab reports, anything and everything you can get your hands on.  Then find a new neuro and go in prepared.  Ask around.  Ask you friends who have MS, the doctors you see, anyone and everyone who they would recommend in your area.  Then spend your referrals with wisely.  It is too easy to be classified as a doctor shopper.

Wishing you strength and patience and praying you find your answers.

terry

[onedayatatime3]

Hi there! Actually the latest MRI was done last week and it was of the brain and spine. I had actually had a friend (who has MS) to tell me that she was certain I had lesions on my spine. When I called and told her that it was normal she said "oh what do they know". I had a Spinal Tap years ago, but I think if I understand correctly that the one for MS is different than just a regular spinal tap? Is that right? They thought I had Pseudo Tumor and so I had a spinal done about 9 years ago and I think another one maybe 4-5 years ago. Both negative. I'm not sure what labs, other than CBC, Lupus test, ANA, but I'm not sure what else has been tested. I do have a Low Vitamin D and Low B-12.

Any other questions feel free to ask because I consistently FORGET! :)

~taking it one day at a time~

[Wobbly]

my goodness..what kind of Dr do we have out there...that's horrible.. I know alot of us here have had dealing with horrible Drs and have seen numerous Neuro before we found or (still looking) a good one that will listen to us... and actually not just write things off and tell us to take a pill... if you know what I mean..

hang in there...you are not alone with this...
wobbly
undx

[Wobbly]

welcome to the forum... you have come to the right place for what you are going through... there are many here in Limboland...waiting for any answers and a Dx to get some help with all the symptoms that we are going through..

have you had a Full Spine MRI... and more then one brain MRI... when did you have the last one... have you had a Lumbar Puncture?  Blood tests... what results did you have with them if you had them?  

so many questions for you...
let us know more about yourself...and welcome again

take care
wobbly
undx

[onedayatatime3]

Hello to you both! THANK you so much for replying to me! Of course trying to remember everything is part of my problem. So some things you mentioned helped me to remember. I am seeing a Neurologist who is actually the one that did the latest MRI. I should back up and say that I have seen a Rheumatologist for the last 3+ years and he was the first one to tell me that he thought I had MS (about a year ago) however he specifically said to me that because he didn't deal with that he didn't feel he could diagnose it. He is a wonderful DR! He told me to mindful of the symptoms and of MS and to be careful when driving, walking, lifting, etc.
This Neuro that I have seen once and will see in April told me that he thought it was not MS and perhaps Fibromyalgia and I explained to him that I had been dx with that about 3 years ago but that several new symptoms had come up in the last year and told him what my other Dr had said. He was the one I mentioned earlier about sort of looking at me well more thru me. My husband insists that we go back in April because he wants to talk to him this time. I just wanted to cancel the appointment and say I'm done.

On a side note to just say how frustrating the last 5 years have been. I actually had a Dr to tell me that I was just fat and depressed so I left his office and for a year lost weight. I lost 115 lbs. I went to a new Dr and told him what the other had said and said now you can't say I'm fat and I'm definitely not depressed so what's wrong? I've also had another "DR" to look at me and tell me that because the lab work came back negative perhaps they should take me behind a barn and shoot me?!!

Thanks for reading!
~taking it one day at the time~

[goofysmom1]

Welcome to the forum!  You will find that this is a wonderful place for support and information.  There are a lot of us like you, including myself, who have symptoms (I have a lot of the same symptoms you do), but are not diagnosed and feel stuck and frustrated!  

This forum also has A LOT of very smart, educated and compassionate people who are very willing to share their knowledge, so ask questions!  You might also check out the Health Pages - they are so incredibly helpful.

Opie made a great suggestion in getting a neurologist on board (if you haven't already) - if you don't feel that the doctors that you are seeing are helping you, then find one who will.  

Keep trying to find the answers(I know how hard it is, I have to keep telling myself to keep trying too).

Hugs,
Chrisy

[opie74]

Hi!

WOW what a list of problems.  I know that you know there are many diseases that mimic MS.  I have 2 cousins with MS symptoms that turned out to be another autoimmune diesase.  You hav4e got to keep trying!  Find another Dr, prefferable a neuro, and give him a timeline of what has been going on.  They can rule out many things by doing  blood work.

There are prople here who know alot more than I do, but I wanted to say welcome, you are in the right place!

OPIE