Very Frustrated!!

How was your diagnosing experience?
2
Diagnosed right away! - 100.0%
0
Some issues,but great doc and neuro,understanding! - 0.0%
0
I felt uncomfortable and judged. - 0.0%
0
Went through several docs before I found the right one. - 0.0%
0
Blah,horrible experience! - 0.0%

 
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dalillady_24
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 3/2/2007 1:03 PM (GMT -6)   
I went to the doc about six years ago for symptoms,which included:lowering of my chin to my chest caused a low voltage electric shock to shoot through my body to the tips of my fingers and toes,my skin had like dull feeling,not numb,but dull sensation of feeling,vertigo would onset so fast when I was cooking or get out of the shower that I would fall down,the shower made me so weak I thought I would die and could take a nap and sleep for hrs after just getting up from an 8 hr sleep,always tired,vision blurriness would come and go very fast.He ran some tests,ekg,eeg,mri,blood tests,the visual thing with the lights and clicks(which made me feel the electric pulse through my body when I looked at it).He said he found no problems,to come back and see him if the symptoms persisted.So I did just that,when I went back,he put me on a depression med,and told me to see a counselor.I was so angry I threw the samples away and tried to forget it.At this time I also started working a very physical job and was tons more physically active than I had ever been,I seemed to lose the symptoms and didnt think about it anymore.I recently changed jobs,to a very non-physically active job,and the symptoms have been back around now for about 3 months,but different ones.I get constipated so badly it hurts and sometimes to the point of my food wanting to come back up because there's not enough room in there for anything else,I have to take a laxitive once a week,numbness (dull sensation) started in my hands first,the left one was worse,then the itching in the palm of my left hand,it was terrible itching,that stopped for a few weeks,and then my feet started feeling this same way,with the worst numbness in the left foot and the itching in the bottom of the left foot,I cant hardly walk sometimes,my balance is way off wack,I have to hold onto something to stay upright sometimes,it feels like I'm walking on knots on the bottom of my feet,I have no arch,I'm extremely flat footed,so this feeling causes severe dificulty walking,been getting bad UTIs lately.I went to the doc,and he  gave me a referral to the same neuro nut that said I was depressed!! I am certainly not going back there,I may not have MS but I have something,I have not been depressed for 6 yrs!I spoke with my doc,and he says hes the only MS "specialist" he can refer me to,so basiclly I'm jut gona have to live with this.That is depressing!I have a really hard time remembering things since the first onset,and sometimes I just cant think,no matter how hard I try,I cant concentrate.I hear that MS is caused by trauma either pysical or emotional,I had both around the time,my husband and I seperated,and I fell off of a diving board and landed all crooked,my neck hurt for a few days,but a pinched nerve doesnt cause all this junk to go on.My hubby and I worked things out,and then I got pregnant with my baby daughter,the symptoms were worse during pregnancy,the skin on my stretching tummy was so numb,I couldnt feel the ultrasound thing,or the coldness from the gel they put on it.But after the birth of my daughter,I had my tubes tied,thats when the symptoms seemed to go away.I guess I want to know if anyone else went through this,being diagnosed as a depressive when you know good and well somethings wrong,but no one will listen.

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 3/2/2007 2:11 PM (GMT -6)   
Hi dalilady.
welcome I'm new too. I am so sorry that you are experiencing this. If I were you, I would get real proactive and go see another neuro whether they are an MS specialist or not. I am just in the process of being diagnosed now but I kind of always assumed alot of my symptoms might be stress related. I was diagnosed with Bi-Polar disorder about 12 years ago and have been on every medication under the sun for depression, anxiety, mood stabilizers etc. I turned 31 yesterday and am now starting to finally realize that I really may have some of these mood disorders but I believe alot of this really may have been my MS cropping up a long time ago. I have a fairly high tolerance for pain and discomfort, so it really took me until this last year when I started limping and my toes went completely numb to get in to the doctor. I had ended up in ER last summer with what we thought was a stroke at the time but now I know it was a "flare." The doctor that I saw a few weeks ago ordered an MRI right away. I saw the neuro a few weeks later and today I'm having a nurse come to my house to administer i.v. steroids. It's gone really fast, but apparently I had lesions on my MRI and I think you said yours came back normal. That was also 6 years ago, alot may have changed by now. I've had many MRI's over the years for various things that have come back normal. Just get as proactive as you can and go see another doc. They don't have to be a specialist. Good Luck.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/2/2007 4:23 PM (GMT -6)   

6 years is a long time to carry a grudge against a doctor.

MS, and a ton of other neurological problems, take a long time to diagnose.  If all of your tests came back "negative" 6 years ago -- all that indicated was that whatever was ailing you then, and apparently now, wasn't significant enough to show up on MRI's.  You didn't mention if you had a spinal tap then -- it might have shown something that the MRI missed.

At any rate, you clearly need to see a neuro. And now is a good time to do that, with so many different symptoms going on.  You should sit down and carefully note when symptoms started, when they seemed to go away, and when they've come back.  Do it as simply and plainly as possible, then go to the neuor that your doctor referred you to, try to remain calm and matter-of-fact. Say something like:

I was here 6 years ago, you told me I was suffering from depression.  However now it is six years later, I have many more symptoms, and I would like to be tested to find out what is going on with my body.  Here are my symptoms and when they occurred, and what is going on now: (and list your current symptoms, starting with the most troublesome and working your way back to the "minor annoyances", if any.)

Then be prepared to undergo testing again.  A 6 year old MRI is way outdated. A new one may show something.  Ask about "evoked potentials", and blood work to rule out other things (there is no blood test that will diagnose MS).

(And it's helpful for us with vision problems if you do like I did with this response -- type just a few lines, then a space or two, then continue with a few more lines.  It's much easier to read. Thanks!)

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


dalillady_24
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 3/2/2007 6:01 PM (GMT -6)   
I am so sorry, I didnt think about the vision problems, I actually have them myself, mild, but I do. I didnt think that may be a problem. I did have the evoked potentials test, that was the light and noise test I was talking about that gave me like an electric shock feeling in my legs on certain frequencies.

Thats very weird, and the doc said he had never heard of the test producing a "physical response" like what I described. It was at this point he became condescending. I realized then that he thought I was making this up, of course he would never say this, but its the feeling I got.

I didnt have a spinal tap, I wanted one because I wanted to see what was going on with me, these things, at the time, didnt really interfere with my life, they were just annoying. But he said that the other tests came back negative,there was no point in putting myself through a spinal tap.

I disagreed, but of course, I cant have it done if the doc wont order it. And he did do blood tests, all negative. So at the last appointment,he seemed very annoyed with me, and like he wanted me out of his office. He started out very sympathetic, and caring, but then when the tests came back negative, and I said I was still having these problems, he changed his tune.

You are right that 6 years is way too long to hold a grudge for a doctor, I agree. I just dont like to be looked at as someone who wants attention, and thats the feeling I got from him. I felt he was unprofessional with it. But the closest specialist is 150 miles away, so I cant be too picky. I will try him again. I started keeping a log of my symptoms yesterday actually, it is a very good friend to have, because often you forget symptoms when you are talking with your doc.

Thanks for the replies!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/2/2007 7:41 PM (GMT -6)   
Hey Dalillady

Welcome to the board!! I'm glad to see u've found us and hope u'll feel u can ask any questions or post any helpful info u may have. We have live chats on Mondays at 6:00pm (cst) and would love to have u join us!

I'm so sorry to see u'r going thru all this and for such a long time too! Six years is quite a long time to deal with these symptoms, but unfortunately sometimes it takes a long time to pin point things enuf to dx. If u'r not feeling comfortable going back to the same doc u saw before, then do as Angie suggeste and see a new neuro. He doesn't have to be an MS specialist, but of course some experience dealing with ms would be preferrable. But before u do that, do something helpful for u'rself. Go back to u'r first doc and u'r first neuro and get copies of all the tests and results of those tests. That includes mri films and reports. Everything they did to determine what's going on with u ... u should have copies of. Take those results to u'r new neuro. It won't mean u can use them in lue of new testing, but will give u'r doc a starting place to compare u'r new results to. Also, do just as Uppity suggested...write all this down. Make it clear...easily read by u'r doc and eliminate noting what u think is wrong. That's his/her job and they should come to their own conclusions. Lastly, get copies of all the NEW tests results. In most cases u can ask for those copies when the test is performed, but if not, by all means request them after u'r sure the doc's office has them in. That way there can be no real delay and therefore no 'forgetting'. I do hope u get some clear answers very soon. I'm in limbo with u...only a year now tho...and can certainly understand u'r frustration and pain. Take care and let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

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