Let me start over. I had MRI's from 3 years ago and 1 year ago. The one 3 years ago showed ON and a ubo in my right frontal lobe., The radiologist said it was demyelination. The neurologist said it was not.
So I went to an MS specialist who said the UBO was demyelination and that along with my clinical exam he could dx me with MS. He started me on Avonex. He decided to retire last year so I had to find a new neuro. This new guy is not an "MS" doctor. We do not have any around now because two of them retired last year.
So I went to the new neurologist who wanted all new MRI's on HIS machines read by HIS radiologist. He totally ignored the previous MRI's and radiology reports. Hope that makes more sense than my other post.
New guy does not disagree with MS dx but does not think I should be having the symptoms I am having at this point. So what, I am faking it so I can give my self a shot?? And take these meds that have totally shot my bed room life and added to my weight gain issue?
You have got to be kidding!!!!!!
I am so sorry that your appointment went to "Hell In A Handbag"!
Can someone please answer..Is there really such a thing as "Mild MS"????
I mean either you have MS or you don't! Am I right Quix? Someone??
I feel for you. I really do!
Well you certainly need to LEAVE that neuro with a quickness!!!!!!
How long have you been on the DMD?
Quix, how can a doctor dx someone, start them on DMD w/ other drugs, then just say......"Oh never mind, you don't have it?"
Again, I am so sorry for you terrible, horrible, no good doctor appointment.
your in thought and prayer.
~Tonya
Hi Tonya,
Thank you. I have been on DMD's for 2 years now. In fact it was 2 year ago this coming Monday I was dx'd and have had steady progressing since.
There is NO SUCH THING as mild MS. Mild or benign MS is only determined after death. So this neuro is chock full of something... probably not goodness or knowledge.
I have only one 'clinical' lesion - in other words, although I had several areas of enhancement on my MRI, only one lesion was looked at by the neuro. Most of my white spots were ventricle enhancement, or UBOs. But I have, and have had, a lot of symptoms. It seems like people with a lot of lesions have few symptoms, while people with few lesions have more... but that's just my impression.
So you definitely have a dud. Why do neuros want to diagnose you with psychiatric problems when they're so unqualified?
I don'at know but I can tell you I am sick to my stomach and in tears. He told me to come home and hold onto something and walk on my heels and toes. I can't.
I told him I can not even get up on my toes. He just shrugged.
First, I'd file a complaint about this doctor and cc him. Second, I'd find a new doctor.
Well, maybe not in that order, but both of those things would be on the list.
In the complaint, I'd note the following
--this doctor is so behind on the data in his own profession that he's basically engaging in malpractice and endangering his patient's health, to wit: the incorrect assertion that lesions should correlate with symptoms in any way--been disproved repeatedly; the assertion that you have "mild" MS, which is not a clinical entity; his assertion that you need to get off of the meds that are helping you, based on faulty "reasoning"; his attempt to attribute your symptoms that are indicative of a disorder you HAVE to a disorder that you do not HAVE.
--this doctor is apparently incompetent to practice medicine, given the conclusion he has drawn that your MS symptoms are not attributable to MS but to "psychological" issues when you in fact have been evaluated by a professional and it has been determined otherwise
--this doctor needs to be sued for emotional damage and distress
I'm sorry this happened to you. But someone needs to know how poorly this man practices "medicine."
Bio
Iiiiiiiiiiiit's Fridaaaaaaaaay!! Time to ROAST this weenie - the coals are ready. Good 'n' hot!
I know this is a lousy time of year for a road trip or flying, but check out NYU.
Hoisting a foamy pint in your honor. Nobody should be treated as atrociously as you have!
Guitar_grrrl
Bio makes good sense to me. Of course, the hospital that told me they were going to pursue my complaint against neuro #3 hasn't returned a call for several months.
Roasting's too good for this one. Run him through the shredder on his way into the dumpster.
Horrible!!!! Sorry, you should definately report him!!! Sometimes I wonder????? Doctors are well schooled but that doesn't mean they are smart!!!! Think of it this way, even like me, I work hard even though most days I feel like poop, I am in the service idustry and I always treat everyone with respect, I really care about what people are getting for there money, I wouldn't expect anyone to buy anything I wouldn't sell to my own children, but then you have a coworker just doesn't share any of the same values you have and you just don't get it!!!! Some Doctors just have to be that way too!!! It's pure ignorance maybe!!! Or just incapable!!! It's just not right!!!! I can't see how you could trust that doctor ever!!! I wonder if it might have to do with the cost, maybe an insurance issue, anybody else any ideas on that???? Take care Hun!!!!
2 years is a long time to be on DMD's, and my wondering mind is roaming.....
1) can injecting these DMD's in to one who does NOT have MS be dangerous?
2) This guy a total idiot and so uncaring! I'm sorry to say that and I probably
should not say that but this is your health at stake!
3) Would he treat one of his own family members like this?
Jensequitur and bio; That is just what I though....there is NO such thing as
MILD ms! Either you have it or you don't!
I'm sending BIG hugs your way. Please believe that you will find another neuro
that will be of great value to you (and has a brain) and will get you back on the
right road in treating your MS.
Take Care,
~Tonya
WTF? That is not the news I ever want anyone to hear.
What he has said to you shows:
1. his sorry lack of knowledge of MS
2. his lack of understanding the significance of dmd's and what we hope they will do for us. I just saw my neuro for the review of my annual MRI and we were both pleased that I had no new lesions and my brain is quiet. He didn't tell me I don't have MS anymore, we were happy the dmd did what it was suposed to do.
3. his total lack of compassion and bed side manner.
The posts above make some excellent points and I hope you will take the time to write a letter about this care.
Changing doctors is never fun and not something to be done lightly, but in this case it is necessary. It sounds like you will need to travel to see an MS specialist - it is well worth the effort.
Please take a deep breath and then regroup. At the very least you need a second opinion.
we're with you on this one,
Lulu
Lulu you must of heard me from over here, WTF indeed!!! :(
LA: so you have MS but because the neuro can't associate your symptoms to the number of lessions you have, he's summised you must also have a mental illness. Now did i get that right, really am I not totally confused here, this really didn't happen surely, what an utter w_a_n_k_e_r!
From what i can work out, this neuro is under the impression he knows more than all the research, he's got the head up their butt syndrome, hard to believe in this day and age but unfortunately it does still happen. lol
Mistake 1: lessions have not been able to be mapped to symptoms, some yes, all no.
Mistake 2: lack of insight that the 2 years of DMD could be doing their job.
Mistake 3: Attributing YOUR DX MS to a mental illness, even dispite a professional in that field giving you a clean bill of mental health. Oh and your reaction to your consult is perfectly NORMAL!!!
Mistake 4: Dismissing objectionable and therfore REAL sx because the MRI doesn't show it, in the places he is expecting because he thinks he knows more than all the studies todate.
Mistake 5: Removing DMD's so the lesions will show up enough for him and then he can justify the cost or dx to whom ever it is, thats a nausty thought and i hope its wrong.
Oh hex, i could go on all blooming day, please dont stop the dmd's, it just doesn't make any sense, twilight zone music playing in the back ground, to loopy to be logical.
Cheers......JJ
JJ you got it!!! Even though my muffled attempt to tell you all what happened. I was just so so upset and could not help myself. I just needed a good sleep and some advice from friends.
He said I DO have MS but it is "mild". He told me I have too many clinical symptoms for having just one lesion and ON. I've had ON twice.
My main issues are my vision and my walking. The other major one is aspiration.
He was so weird yesterday. He said if I were aspirating I would have pneumonia all of the time.
I happen to be an expert in that area having had two children with aspiration problems and one on a feeding tube.
Aspiration does NOT mean it is traveling all the way into the lungs although it is getting into the airway. Now if there were PENETRATION also that is the biggie.
That would mean it is getting down into the lungs and pneumonia would be a real issue. However even with my little one who had aspiration with penetration she never developed pneumonia. She was eventually placed on a feeding tube. So he was dreadfully wrong with this issue. I wanted to educate him but decided he was not worth my energy.
It is so confusing that he wants to take me off DMD's when I have a stable MRI just to see if it starts to show something in 6 months.
So if it does show something in 6 months what kind of disability will I be left with?
My pshyc report says I have a mild adjustment disorder related to making life adjustments to my MS diagnosis. It says I am not depressed and have no other mental issues and no history of them. Which is TRUE.
It states that DMD's can cause depression so an antidepressant is being used prophylactically.
The psyc I saw said adjustment disorder does not cause the type of physical symptoms I have.
This doctor wanted me to walk on my heels and toes to exercise. I can NOT even get up on my heels or toes. He had a stupid smirk on his face. My husband was there and he was getting angry.
I think I am going to make an appointment with my PCP to see what he suggests at this point since he is the one who found this doctor for me. My PCP has known me for 20 years now and he knows I am stable. I am not an attention seeker. He knows I am really bad about going to the doc when I really should and that I have always been reluctant to take medications.
Anyway, should I stop my Betaseron or keep taking the shots? Should I really try to work off of the medications that are helping my symptoms? He told me I am on too much for not having the lesions I "should" have.
Here is my list
Betaseron every other day
Gabapentin - total 2100 per day
Flomax
Clonazepam (klonoptin) 10 mg per day
Oxcarbazepin 300 mg twice a day
Baclofen 40 mg per day
Lexapro 10 mg
Is that a lot?
They are helping me. Doctor said I still do have MS even with the stable MRI. What does he WANT???
My husband said he notice on the wall of the room that the doctor had started a new study with MS patients and he thought maybe I did not fit into the right typical MSer.
My husband said he felt like we were basically being shown the door and he really did not want me back.
The only thing I can think of is maybe his nurse was upset with me. Back in October when the doc talked to me about my MRI, when he thought he saw lesions in my brain stem, he talked with me about PPMS because I fit the bill.
So I called the nurse and talked to her several times trying to find out if the doc had talked to the radiologist and come to a conclusion. She got upset with me. I suppose I was being to bothersome to her. You know it was only an MRI and PPMS we were talking about, why would I be calling her about that?! Not a nice lady.
Well, if you made it to the end of all of this thank you so much for the support and suggestions.
I do have MS. Mild according to the doctor. Too many clinical symptoms to all be related to MS according to the doctor. So, now I have to start another doctor search.
LA
I have 10 lesions. I was dx with 7 or 8 lesions 10 years ago, and my Neuro told me that it was benign – benign not it the way that you would think normally, just that is was going to be a slow process – follow?
Fast forward to now……..I now have another 3 lesions on my spine. The major one being on the T10 – hence the reason I am hardly able to walk at all. Totally numb from the waist down, burning sensations 24/7, and really very painful.
My second opinion back in October with another Neuro was wondering if I had MS at all because of the lack of lesions!!! Needless to say I gave him a right rollocking for this:))))) and so he back tracked a bit quick:/
So in a nut shell, I have benign MS – because of the lack of lesions – even though I have constant double vision, unable to walk and urinary retention etc.
My Professer (first Neuro in France) wants me Tysabri ASAP, BUT the local Neuro is wondering if it’s MS or not. My premier neuro in the UK is now retired, but he dx me within a month even though I didn’t have the required ‘X’ amount of lesions.
It just goes to show how these Neuros have so many differences of opinions.
Can you not insist on remaining on DMD’s??
Debs xxx
If you weren't next door in Indiana I would guess you are wrapped up with the NHS quagmire in the UK. I didin't think we have benign MS over here! LOL
I still say WTF!?!?
No, please do not stop your drugs. He provided you no plan to come off of them - I am not an expert on any of these but I know enough though that you may have to titrate down your doses to safely avoid withdrawal. I don't see anything out of the ordinary on your drug list or any large amounts. The baclofen is a relatively small dose. Rebif and flomax are ordinary doses. I don't know enough about the other 4 to speak about them. Someone else here I am sure can help.
Do talk to your PCP and find another neurologist. Go in prepared with the information on treating ms, even if it is *benign* and help your PCP to understand the significance of this approach. The odds are your PCP will not be educated on this topic and you will have to provide the schooling.
I am still shaking my head over this one ....
feel better,
Lu
Why are you on a Atypicle psychotropic drug? Lexopra is FDA approved for sitzaphrenia(sp) or bipolar 1, its used off label without any science behind it. Have you read the horror story i posted about serequel and the issues with the prescribed replasement drug lexopra? Have you by any change been putting on some weight?
Just from my own research it apears that these types of drugs can them selves cause movement disorders, it might be worth checking out if you really need such a strong drug, especially if there are other alternatives. I'm no dr as you know, but if you google Lexopra you'll see why i'm saying this, it alone should be food for thought!
Its now 3am here, slept hours today so thats why i'm up, but i'm not sleeping right, my clock is wonkey lol I'll do some research tomorrow (oops later today) and get back to you. Your on a pretty low dose of lexopra but i still cant work out why you'd get put on this drug, its definetly off label usage and over perscribed. leave it with me and i'll find out if the meds could be causing you more problems, well i'll try anyway.
Cheers......JJ
Thank you JJ. Lexapro is what I was put on by the MS doctor. I started to clinically progress and he changed me to Prozac. Not good.
So the psychitrist I saw said no to Prozac and put me on Welbutrin. That made me too anxious so this new neuro had me go back on Lexapro. Big weight gain after starting medications 2 years ago. :-(
LA
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
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
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.
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.
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
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