This is so frustrating!

[LATW]

Went to the neuro for a 3 month check up today.   He comes in and asks how things are going.  I pretty much tell him the same things I told him 3 months ago. Not much change.

He gets my MRI out and looks at it.  We had already gone over it 3 months ago.  He though he saw new  lesions but then the radiologist told him no.  

I thought this time would just be a check up but NO.  He came in and told me that my symptoms do not line up with the MRI.  I have ON, one 3mm lesion in my right frontal lobe white matter and some areas in my periventricular region that were not there 2 years ago.  

They did not call them lesions in the periventricular area but ubos.  That was what my 3 mm lesion was 2 years ago.  It has become larger.  But none of this is acknowledged by the doctor or his radiologist because, and I am only assuming because they have my previous films and reports, they were not done at THEIR center.  

I can't figure out any other reason why they would totally disregard the MRI's I have had in the past at another center.

So he starts in with your MRI is not bad enough to be causing your symptoms.  You can go off of your meds including the DMD.  "You do have MS BUT it is very mild and I think your symptoms are cause by a deep seeded psychological issue".  

He told me my clinical exam did not mean much.  He totally disregarded my swallow study that showed aspiration.  Told me that I should have no physical restrictions and that I should be doing everything every other normal healthy person is doing.

He told me to work off all of my medications and come back in 6 months and we will see what the MRI looks like.  Yet he still said I have MS.  

I told him I had been to a psychiatrist and he should have received a letter from him saying that I am perfectly fine mentally.  He said they could not find the letter.

I checked and the letter actually had not been sent to him....it HAS NOW!!  I have it too and not only does the letter say that I am not depressed and do NOT have underlying issues the doctor went on to say that there was nothing mentally causing the physical symptoms I am having.

I am so upset.  Now I have to find another doctor.  Why do doctors disregard tests that are done at other hospitals other than their own?  I decided I need to find a doctor close to home even if he is not an MS doctor.  

I need to use their hospitals and labs I guess.  This is just awful.  Glad my husband was there with me.

This doctor told me last time that I was one of the few people with very few lesions but a lot of symptoms.  He talked to me about PPMS.  I agree, I do have VERY few lesions right now but I have been on DMD's for two years!!  I started them about 7 months after my first bout of ON.  

Could they be WORKING?!?!?  Wonder why we are made to take these awful shots if they are not going to keep us from forming new lesions?

I am just a mess about this.  I still have a diagnosis but feel pretty chewed out and like an idiot.  He made me feel like I was faking.  I asked him how a person would fake aspiration during a swallow study.  I am sure he did not like that and I am not one to read a symptom and then develop it all of a sudden

I don't have every symptom.  He told me swallowing troubles only occur in advanced stages but it says right on the MS society web site that swallowing studies can occur at any point in MS.  I have a dud don't I............shoot!!!!.  I thought this was a good doctor.

I know what I need to do, I just need an ear to listen and understand and tell me I am right.  

LA

[LATW]

Hi Tonya,
The weird thing is he titrated me up to 2100 on the klonoptin just in the past 3 weeks.  I was on 1200 per day.

I have been waking up with a lot of back and leg pain and klonoptin is what they decided to increase.  It has helped!  

He said to take it at meal times and bed time but I forget my 6pm dose most  of the time.  So I am not going to worry about taking that one.  I am going to start taking one Klonoptin at noon  because it makes me so tired.  I take Baclofen at that time also.

That guy had a bad day or something yesterday.  I am feeling much better about the situation this evening.  

I am going to contact my speech therapist and see if she can tell me who her other MS patients see.

LA

[tonyad]

Hey there, Me again :)

  The Klonopin you are taking is .5 mg 2 times a day which adds up to 1.0 mg (1 mg)
I do know that the Gabapentin is something that you really have to be careful with when coming off of it. It will take a while for you to eventually be completely off of that particular drug.   2100 mg per day is quite a nice size dose. So please be careful if you do decide to stop that one.
  
  That's not to say that you should slowly wheene (sp) off the others too. The Klonopin is in the benzodiazapine family (same as Xanax) so for that be care ful also.
Oh HELL!!!!   This converstaion should not even have to be taking place!  Your Neuro is a freaking QUACK!

   I agree with the others that you should stay on your meds until you see another neuro and get this all sorted out.....I feel for you!  What a STRESS!  Hopefully this will not throw you in to a flare.....Then would that make him happy??

~Tonya
  

[LATW]

Ess- My husband said the doctor is taking me off of the meds because he does not believe the symptoms I am having are caused by MS because I do not have enough lesions.  Ok, 0.5mg of Klonoptin twice a day.  Is that 10 mg?  Or 0.10?  I don't know. I would like to get off of the anti-depressant however I will say I do get some of that seasonal depression I guess.  Not enough sun or light, too much snow.  But I have never felt it was bad enough for meds.  I am not sure I should even go off of the meds.  I need a new neuro fast!

Dennis - I am so sorry you are having problems too.  It really stinks!

Supo-You are right and I have not thought about it in those terms.  Not a good neuro is he.  

[supo_uk]

Hi LATW

So sorry to hear about this very frustrating and all too common scenario.

Tell that sorry excuse for a neurologist that if he doesn't treat the PATIENT raather than the MRI you will sue him for negligence. Perhaps this will sort out his lousy attitude.

[Sailorsong]

Are you sure you are not going to the VA for treatment? This sounds like something they would pull. At my VA the doctors are not allowed to Rx aids to stop smoking. You have to get them through the stop smoking clinic. But when you finally get your PCP to referr you to the stop smoking clinic you find out that there is no one in the clinic that can Rx them unless you happen to be a cancer patient of the LPN there. Of course you don't find this out until the third trip to the clinic as you have to go the first 2 times where they promote the use of stop smoking aids in order to get into the session where you are suppose to be able to get them. Oh the first 2 sessions are reffered to as the stop smoking treatment clinic and where you are suppose to be able to actually get the treaments is reffered to as the stop smoking return clinic.


Sorry about the degress into the VA. I am just so ticked off at them right now. Anyway I hope that you will be able to get someone good with you next Neuro.

Dennis

[essdipity]

This situation is maddening. Even if there were such a thing as mild or benign MS, you don't have it! The crazy doctor is counting lesions, saying you don't have enough for all the symptoms you have, and then saying MS is not your main problem??

You definitely need a new neuro. I agree that starting ASAP with your pcp is a good idea, since he knows you and knows you are emotionally stable. See if he can help with another referral, and be sure to tell him all the details of why you need one.

As to your meds, yes, you're on a lot. Don't try to go off them alone. Are you really on 10 mg/day of klonopin? That's a huge dose. Maybe 1 mg?

Lexapro has helped lots of people and has a relatively mild side effects profile. Of course, some will experience bad effects, but as you know, there are lots of meds on the market, so if you need an anti-depressant, there are others to try. I don't think anyone should be on an anti-depressant just as a preventative, unless that person has a history of depression, which you don't.

But once again, don't go off any meds on your own. You have enough on your plate now.

Sending good wishes,
ess