MS specialist appointment didnt go so well

[torikat32]

well I went to the ms specialist yesterday and met with the nurse for an hour after she took a through history and symptoms the doctor came in looked at my mri and did a brief exam and said i do not have ms that my problems are from depression. I said yep I am depressed but not to the point that is causing my illness I see a counselor and she said i am sick and when they find out whats wrong and treat then my depression will go away. so I said depression can cause my walking balance problems he said well no and didnt offer any thing else except that I do not have a neurological condition and I should be happy. well wtf all the dam neuro's I have seen  none have ever said depression they just give up last appointment at lahey clinic she said she cant rule in or rule out MS and now this doc did with a wave of a finger. So I give up I am done searching for answers I will continue with my physical therapy and then proceed from there. I see my pcp on monday she wont be happy at all with what this doc said.

thanks everyone
Kat

[jensequitur]

I had speech problems for some time after my flare in 2007, but they resolved on their own.

It looks to me as if there's a lot of neurological diseases out there that we can't identify.  We call certain diseases MS because they have all the signs, but what if there's actually several different diseases?  Fibro and CFS and MS may actually be five or six diseases, manifesting in different ways!

So I'm glad you've got the PCP on your side.

[torikat32]

I went to pcp this morning she said he is a jerk and she was sorry I ever went there. It looks like we may put ms on hold for a bit no change in MRI in 8 months so we are investigating chronic fatigue syndrome now from what I understand my symproms fit cognitive problems ,fatigue,balance isssues ,muscle pain so she will look into it and even though there is no treatment for it I am going to physical therapy already but its a diagnosis that may help me for ssdi . In the mean time I am taking a break from the neuro's and going to investigate csf further on my own I ave read it can be just as debilitating as MS or Lupus and so forth and it is not related to depression. As far as the other jerk saying I am depressed she said I am not and I dont feel like I am. I am just down because of all this **** going on but we will figure tings out. I am very grateful for my primary doctor she hasnt given up on me and will do anything that I feel I need. Also I have been stuttering for quite awhile now cant hold a decent conversation she asked if I want to go to a speach therapist and I said I dont know has anybody had this problem and have they gone to speech therapy and has it helped?

Thanks everyone I really do value everyone's help
Kat

[grannyhotwheels]

Hi Kat,

I sure do remember when they told me mine was all in my head... He then went on to say that my biggest problem was that I was lazy and was trying to get out of work... This was after he had done a nerve conduction study to see if I had carpel tunnel syndrome... Needless to say this was a Workman's comp doctor that the place I worked for had sent me too...

I told that doctor that I had worked since I was 15 years old and actually enjoyed working... There is a reason that my wrist is numb and tingly but it's not from my head... He told me to go back to work with no restrictions... My job was stacking greeting cards and when your hand doesn't work it's kinda hard to do...

The next day I went to my family doctor and he put it in a brace and put me on light duty... He said we will do this until we can figure out what's wrong with you... My employer didn't like it much but there wasn't much they could do about it... A week later the numbness and tingling was in my foot on the same side... My doctor said right then that he would almost bet I had MS..

I went through another 4 or 5 Neurologists and even spent 10 days at the Mayo Clinic in Minnesota with only getting a probable MS DX... Like you I had had enough... I told my doctor I wanted to give up and what ever happened would just happen... By the way I was in and out of a wheelchair by this time... My doctor was the one that wouldn't let me give up...

He said you have to go in there and be your own advocate... Take your test results and MRIs into his office and tell him what you just told me about being at your end and wanting to quit... My doctor sent me to one more Neurologist and I did just what he told me to do... After spending almost 2 1/2 hours with me and my test results I got my diagnosis... It took 3 1/2 years.

I'm leaving out a million other things that happened along the way but please don't give up... There is a doctor out there that will spend that 2 hrs with you... One that will believe you when you tell him it's not in your head... A doctor that will give you a DX  weather it's good or bad... I know there are some that will never be diagnosed but they are the ones that gave up...

Hang in there and keep your chin up... Please keep us posted when you go back to the doctor..

I'll be praying,
Carol

[Willowwoman777]

Hi Kat,

I was diagnosed at 50 with MS and told I have had it since my 20's. Why? Because very stinking doctor I went to told me it was all in my head - well, I guess with the amount of lesions up there, I guess they were right..lol. I gave up, too. It gets so tiring when  you are being told it's psychological and your family calls you a hypochondriac. I agree..it is depressing when you know something is wrong with you and nobody can tell you what it is. For me? It was such an incredible relief to find out I had MS because I felt vindicated. After being the brunt of a family that patronized me and made me feel mentally defective, and lazy - even at 50 I just wanted to stick my tongue out at them and say "nanananana". The problem is, though, the more you stress about what is wrong, the worse the symptoms can be..believe me, I sure know how stress messes with all this stuff.

Because of a friend, I'm finding there are several different diseases that can share symptoms of MS and even cause brain lesions. I'm behind on things, but do you have any lesions? Have you also been worked up by a rheumatologist? I was told that lupus and MS share many of the same symptoms. For me? I have classic MS lesions. Lucky aren't I? (NOT)

[ArtistLike]

I can relate, Kat.  I haven't seen an MS specialist.  In my mid-20s, I had frequent numbness in my feet and sometimes my right hand and strangely blurry vision, but I never saw a doctor about it.  Last year, the feet started burning to the point I couldn't walk (in addition to terribe vertigo, etc.) and finally went to a doctor, had a litany of tests including brain and lumbar MRIs and an EMG, and all were normal, so I was told it all probably stems from anxiety.  I am anxious.  And depressed.  Even suicidal a lot of the time until I started seeing a psychiatrist about four months ago.

I am now on two antidepressants and an anti-panic medication--and a month ago, all my symptoms came back, plus occasional double vision, numbness in my hands and face, and a left leg that sometimes just doesn't do its job.  I went back to the doctor and asked for MRIs of my C and T spine...she didn't understand why, but I had read that hearing problems are rare with MS but usually associated with a cervical lesion, and I've got big-time hearing issues in my left ear.  So my brain MRI report came back today: normal.  My c-spine report came out last Thursday: increased focal signal intensity in C2-C3, and so they're going to re-scan me on Tuesday to make sure it wasn't a machine fluke.

I definitely have mental health (depression/anxiety) issues, but now I am convinced that these symptoms are not all psychogenic.  So I'm taking the advice of the wonderful people here and being my own best advocate and insisting that the doctors consider my case as not just a sad, whiny person.  We'll see what happens.

I wish you luck.  Try every solution to make things better, and if you think the doctors are wrong, then tell them and then get more opinions.  Just bear in mind (as I do) that you may be wrong, too.  But one way or another, this is not a fun way to go through life.

[doni54]

I can relate though I wasn't told I'm depressed.  My first appt with my current MS neuro wasn't great.......no ON just an eye infection........could be Lupus, low B12.......then shows me all my brain lesions and c spine lesions and still discounts MS.

Then I have the Evoked Potentials where the doc there asks me if I can even see out of my right eye and HE says MS!!

LP with no O bands, then the MS neuro calls and goes through this long talk with me and finally when he's finished I just say.....can I ask you one question?  He agrees and I just ask if this is MS and he says yes, but I'm not comfortable with giving you your dx yet, lets wait another 6 months!!!!

All this is after approx 10 yrs of symptoms and many PCP's, this is the second neuro, the first one told me I wouldn't still be walking if I had MS!!

It sounds like you have an understanding PCP and that's a good thing.  If it weren't for my PCP I wouldn't have gotten this far and he promises me that he will get me through this and make sure I get my dx.  He isn't too happy with my MS neuro either...haha

If it's one thing I know, and other's on here can attest to, it takes persistence for some of us to get our dx, but we can't give up (though sometimes we really want to), we just have to believe that one day we will find the right dr who will listen to us and help us.

I do understand now why so many with MS end up in wheel chairs and in bad physical and mental conditions before dx, as it takes years for some to get to their dx.  

I pray that some day there is a better and faster way to dx MS, I think it would greatly improve the outcome for many.  A cure would be even better!!!

So don't give up!!  Take care of yourself, you aren't alone in the fight for a dx.

doni

[Dee5112]

Doctors just don't listen to their patients. After 10 years with problems I finally have a doctor who is listening to me. He promised me he would fine out why I am having so many problems. Each test gets me closer to a dx. I don't want MS, but just want to know why and slow done progession if possible.

Don' t give up. I know it's hard, but hang in there. Hopefully you will find a doc that will find out why you are having problems.

[jujuminx]

You have been in limbo a very long time.  It's time you had a bit of luck with a firm dx.  Depression is way too easy for these dr's to throw around when they cannot come up with the brains to figure something out.

Just b/c he said from depression (and admittedly said probably not all from depression), doesn't make it so.  Regroup and refocus.  Hopefully your pcp will give you some direction. Sorry for another dead end.

Julie

[HVAC]

Sorry. May be your PCP will find another Neurologist or lead you to another specialist. For me it took a long time. They said the depression thing to me. I said does Depression cause Neurological problems on one side of your body? My PCP said no. With that my PCP referred me to yet another Neurologist. Many times I gave up. I hated Specialists for many years.

Alex