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cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 8/8/2007 6:37 PM (GMT -6)   
Hi all,
Well went to the Neuro showdown yesterday and I have been just so disgusted with him and myself that I couldn't get motivated to log in here and tell you guys what happened. Here it is, this week's latest version....
"NOW" and to quote him "Um, well, there are no new lesions, and um, well, the lesions already there could be because of your high blood pressure, and I am not totally sure. Your spinal tap was normal, and all the other tests we did to rule out diabetes, thyroid and a host of other blood tests came back negative. So all these symptoms that you have like numbness and tingling, burning in your feet, fatigue, blurred vision, double vision, memory problems, difficulty walking, stiffness in your legs, intolerance to heat, dropping things, loss of sensation, facial pain, depression, well, nothing screams out to me that you have MS. Therefore I would think that your lesions must be from your blood pressure. (Last week he told my Doctor on the phone it WAS MS).......now it is my blood pressure." (I could have just cried my eyes out after hearing that.)
"BUT"...........he continues......
"I can't rule out MS as you could still have it so we will just have to wait and see what happens"
NEXT APPOINTMENT 9TH MAY 2008!
My GP has put me on diazapam a fair while ago because I asked her for them only for when I can't sleep and I don't take them every night. When he asked me I said oh yes, 1 at night, wasn't thinking and I couldn't remember, then later I remembered that I didn't. He said I don't like this medication and you should stop taking it. I only take it when I can't sleep.
He can go jump. The old 5mg diazapam takes away my anxiety restlessness and sleeplessness and I am not going to stop. I will talk to my GP, she knows I am not addicted to it and I only take it every now and again. A script of 50 lasts me 3 months. I would hardly call that being addicted and it doesn't cause me to have any "weird symptoms". Nothing has changed since I started taking them.

I think I just lost all hope at tackling him right there. Sorry guys, I whimped out! All I wanted to do was get the hell out of his office. He didn't test me, make me walk the plank, nothing! However he has decided to do the Evoked Potential Study in October, well I think it is that test. There is some other sensation test that he wants to do but now I can't remember whether he is doing that or I am being sent to another place........I CAN'T REMEMBER WHAT HE SAID! Anyway he mumbled something about having to send a referral somewhere so I guess they will just let me know or I will get a letter. He kept asking me if I had any other symptoms..do you think I could remember? Nope, I had all the info in my hand to show him and I was just so gob smacked that he had changed his darn mind yet again that I forgot to show him. Anyway, I think he is the sort of Specialist who thinks he knows everything so what would be the use?
Come on September so I can go to the 2nd opinion appointment. Oh, and the other thing.........Do I drink alcohol. Yes I do, he already knows that.
I have a glass of wonderful Australian chardonnay with my meal every night and on Sunday I have 2 glasses of champagne. If he thinks I am giving up the one enjoyment I have left he is dead wrong. I did stop all together about 6 months ago, not one drop for 2 months at least or longer, can't remember exactly how long. It made absolutely no difference what so ever to my symptoms. So what next, is he going to blame my problems on alcohol? Good grief!

Has ANYONE been diagnosed with MS having the above symptoms, multiple scattered lesions in the brain, a clear spinal tap? I feel like I am going crazy.
When I asked him what is causing the numbness, pins and needles in feet and legs, arms and hands, and burning..... Answer: "I don't know."
When I asked him why I am dropping things especially small things like tablets....... Answer:"I don't know"
When I asked him about my chronic facial pain and fatigue..... Answer: "I don't know"
What is causing my wild mood swings.........Answer: "I don't know"
Does he know ANYTHING?????
He said it is just one of those things that can't be diagnosed. Give me strength, I just don't know how much more I can take of this.

Sorry guys, I am real down today, I just feel like I am getting nowhere fast.
I feel like I let you guys down as I was all powered up to tackle him head on, then I dropped my bundle.
I go to my GP on Monday so will have a whinge in her ear. I hope you guys are having a better day than me....I will be ok in a few days and back to my usual self.

Take care all,
Cocoa

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 8/8/2007 9:50 PM (GMT -6)   
Hey Rhonda, are you still there? Miss hearing from you. Guess you are real busy being a moderator. Hope you are doing ok
cocoa

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/8/2007 10:30 PM (GMT -6)   

Hey Cocoa,

Wow that is reallly rough.  I am sorry you are so unhappy with your doctor.  You can absolutely have MS with lesions and a "clear" spinal tap.  The oligoclonal bands are not a hundred percent thing otherwise they could use that as a surefire way to diagnose MS.  I am so glad you are going for a second opinion.  You could call the doctor's office back and ask for the name of the test he orderd so you can be sure that it is the evoked potentials.  That would also remind them to get on that.  Ask for a timeline for that, or when you can expect that test to be ordered and when that date comes, make sure you have been contacted and if not call the offfice back and start leaning on them so this gets done. 

Don't every worry about your threads or posts sounding down.  We want to hear how are doing.  You have every reason to be frustrated.  Good luck with your second opinion and the evoked potentials.  I truly hope you get some answers that leads to treatment.

Love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 8/8/2007 10:46 PM (GMT -6)   
Thanks Gretchen, hugs to you!
I will follow up on him next week.
Tomorrow is Endoscopy day for my GERD so I am trying to organise myself to get through the procedure with out cracking right up! I am a bit nervous about it, I have had one before but I guess everyone gets apprehensive! It will be a long day, nil by mouth from 7am and I don't have to be at the hospital until 12.30. It will take me around an hour to get there by train. I will just try and keep myself busy until it is time to go. I won't be able to go home until between 4 and 6pm and I have to lean on my flatmate to pick me up, they won't let me go home by myself. I will take your advice though and double check with the clinic on Monday to see exactly what is what.

Thanks again for your concern, this is such a great forum!

Cocoa

anniebooboo
Regular Member


Date Joined Jun 2007
Total Posts : 53
   Posted 8/8/2007 11:29 PM (GMT -6)   
Gday Cocoa,
Please, please, please don't say you have whimped out or let anybody down. We are proud that you had the nerve to even ask any questions. These guys can be truly intimidating! They have our health and our futures in their hands. To me it sound as though this neuro has commitment phobia - fear of committing to a diagnosis. It also sounds as though it is endemic throughout the profession. Chin up. Who knows what answer you will get from the 2nd opinion or what the evoked potentials will show. You may be counselling me for a very similar scenario come October. It sounds like a large percentage of people have to get way worse before a doctor will diagnose and treat. Maybe its because the drug regime is so tough. I'm sending you positive thoughts through the computer. Rest, relax, enjoy your pm vino and I'll have a red for you tonight too!
Annie

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 8/9/2007 1:37 AM (GMT -6)   
Thanks Annie for the encouragement, I really needed a bit of a lift.

I've felt very flat today.....just really drained. Could be cause tomorrow is hospital day, don't know really, I don't usually get myself knotted up especially if I know what they are going to be doing and know that I will be floating around out there somewhere and couldn't care less. I decided I am going to have a couple of drinks tonight, to hell with it. I don't think that it will do me any harm. I will have to get up early and have a good brekky so that it will last me until they let me out.
I hope you enjoy your red and I will enjoy my 2 whites so........
Here's Cheers to us!

Catch you after I am home again,

Cocoa

karma292
Regular Member


Date Joined Jul 2007
Total Posts : 20
   Posted 8/9/2007 10:32 AM (GMT -6)   

Hey, cocoa, sorry to hear about the neuro, but it sounds like my story.  Remember my 8 years until diagnosis.  I've heard it also.  Well, they weren't sure about all the symptoms and I was sent to specialists for Lupus and Jorgens syndrome (spelling wrong on that one) and a whole lot of other things including vasculitis etc.  So be patient, it is hard sometimes but stress is not helpful.  So have that glass of wine and try to relax. 

I will be thinking about you on Friday when I know you have the test at the hospital.  Ugh.  but at least you are being proactive and getting to the bottom, pardon the pun, of that problem. ha ha.  And I agree with Annie, you did not wimp out with the neuro, sometimes they can be intimidating, as I am with mine, very intimidated at times,  they are supposed to know more than we do and there fore an authority figure.  It is hard to stand up and oppose their way of thinking or to bring up things that my upset them in case we get bad care.

You certainly didn't let anyone down so relax.  You are getting a second opinion and that is what you need to do.  Keep going and trying to find answers and one day there will be the answers to what is happening in your body.

Keep posting and keep in touch and remember we care and so enjoy communicating with you, no matter how you are feeling, we need to keep in touch.  I care about you and want to help any way I can.

Karen


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/9/2007 3:24 PM (GMT -6)   
Hi Cocoa,
 
   I think you deserve a nice big gentle ((HUG)).  The limbo road is rough and frustrating, but please hang in there and we will all help you along the way!  You doctor sounds a bit on the conservative side from what you are saying.  It doesn't sound like he is totally dismissing MS at this point since he is ordering the EVP test.  I do believe we have several people here who have had clear spinal taps.  It's not totally necessary to have it positive according to the criteria. 
 
   I'll be thinking about you.  Good luck with your test tomorrow, and please keep us updated.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 8/9/2007 5:50 PM (GMT -6)   
Hey all, just here for a couple of minutes to get the numbers for Powerball to see if I'm a millionaire. They don't look good.

It is 9.48am here Friday so this is it! I catch the bus at 10.47 then get the train up to the hospital.
Thanks for all your concern for me big hugs to you all!
I will let you know what happens tomorrow which will be Friday in the States.
I am a bit nervous and I would give anything for a glass of water right now!!!

Catch you

Cocoa

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/9/2007 6:17 PM (GMT -6)   
Hey Cocoa!!

I"m so sorry!! Yes, real busy, but with children! They went back to school yesterday, so much more of 'me' time now...i'm hoping anyway!

Wow lady, u'r having a real go of it, huh? I'm sorry! I've been thru all the tests that i'm aware of them doing, short of the lumbar puncture, and all are normal. No lesions or other 'signs' they can certainly attribute to ms, but my doc says he won't rule it in or out. Lucky me. Seems u'r in the same boat, but geesh, u DO have lesions!! Try not to let these docs bother u. Hang in there and get the job at hand done...getting care for urself. U are so worth it and u so deserve to know something friend. Don't worry that u didn't clobber that guy either! He wasn't worth u'r efforts! Save u'r strength for that doc appt today and get some answers. I will be here waiting to hear and hoping for the best for u. Take good care of ur'self friend. ;)
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 8/9/2007 9:13 PM (GMT -6)   
Hi cocoa,
Your story hit home with me. Geez, i feel for you. I went though 1 and a 1/2 years of that. I hope you find the right doc to help you. It is so frustrating, i know. It seems as though there is never any sense of urgency with heathcare professionals. I know it seems hard right now, but try to keep your chin up. Dont stop till you find a doc to help you, and you will. You are in my thoughts and prayers, just wanted you to know that. Good Luck!
Love,
Lynn
Dx Dec 06, Rebif,44mcgs 3 x wk, Baclofen,Neurontin,Celexa


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 8/9/2007 10:15 PM (GMT -6)   

Hi Cocoa,

 

I hope your endoscopy went well, and you are feeling better. Hang in there, I do know how incredibly frustrating it is to be sick and feel like your symptoms are just being dismissed. I have found that not all docs see things the same way, and with MS being a clinical diagnosis in the end, there can be a good deal of variation in how docs interpret findings and diagnose.

 

For example, within the space of a few weeks, I had two different neuros examine both me and my test results, and give me totally different and conflicting information. I have to say that this huge difference of opinion was not very comforting, but one neuro was very clearly the more reputable, and he got me headed in the right direction. So, don’t give up hope that your second opinion doc and the evoked potentials can lead to some answers.

 

Take care, and let us know how you are doing,

Sunny

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/10/2007 7:22 PM (GMT -6)   
Hey Cocoa!!

How'd it all go?? Come back and fill us in! I was recently dx'd with GERD and Barrett's Esophagus and had nearly zero symptoms! I'm anxious to hear what u'r doc had to say. Take care and hurry back here!
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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