No hope

[CaroleL]

I'm so discouraged! Not only am I physically disabled, bedridden and dealing with tons of symptoms, I am so emotionally drained. I feel like I've been kicked when I was (am) down.

I saw my new doctor for the second time today. After waiting over an hour in the waiting room (and I don't handle sitting for very long), hubby ABD I went into docs office.

We were informed that he received a call from Dr. Monster, the Neuro I saw in emergency last week, and this doctor told him that the problem is in my head and is not MS. This is the same Neuro I have an appt with in 2 days.

This new doctor has not yet received my files from my consulting doctors over the last 5 years, so he has no clue about my medical history. I had given him a list of my symptoms over the last 25 years, all textbook MS. He never read it.

Dr. Monster spent a total of 5minutes with me in the ER and witched the whole time.

Neither of them has yet received the results of my MRI. Automatically, because the word "depression" is on my file, everything is in my head. But treatable I am told.

The doctor didn't listen to any of my new symptoms, I didn't get a chance to ask any questions... Nothing! I was given 3 new prescriptions to take and another appt. in two weeks. My 5 minutes were over.

Hubby and I were in shock by the treatment we received. We're both so angry. I feel like I want to retreat from the world. I don't want any more appointments, no more doctors. I just want to be left alone.

At the same time, I so much want to walk again. I want to be healthy.

I want a doctor I can talk to!!! I've lost all faith in doctors and I don't have much faith in myself now either.

Without treatment to stop this from progressing, I have no hope of ever walking again. Being bedridden for the rest of my life!

I feel like ill ever stop crying. No wonder I'm depressed!

[bree2013]

Carole, I'm so sorry for what you are / have been going through.

My prayers go out to you for physical and mental comfort AND answers. How frustrating to not have answers.

Bree

[suziq38]

Carole,
Go see the patient advocacy representative at the hospital.
See if he or she can help you get a doctor that will listen to you and treat you.

[mlissa67]

Carole,

I'm so sorry to read about your struggles, it's just not right. I agree, you should seek out a patient advocate or other similar type person who can help you find a doctor who will listen to you, read your records, etc. I don't understand how they can get away with treating patients this way.

[ghostgirl]

Aww Carole. I hate hearing this. Hold on hun, I feel the next doctor is the winner. It's just the waiting that beyond sucks. Sending you and {hugs}.

[22cyclist]

Carole: If your MRI was done on Sunday, how could they have read it on the weekend? Or, if you were there after the MRI, how do you know they didn't read it? That may be why they spent so little time with you if the MRI was normal. Just guessing. No matter, they will definitely have read it by your next appointment, so just give them time, ask about it at your next appointment specifically. You have the right to know. If your head MRI is normal, ask for a spinal MRI.

Take care
Lisa
Moderation Team

[October22]

Hang in there!

Carole,
I just wanted to say there is ALWAYS hope and everyone is here for you! I've seen some of those uncaring, dismissive "doctors" that have no business being in the profession and it is horrible being treated that way. All I can say is they're not all like that and you will find a good one!
Do something special for yourself and your husband and let it go for now. One step at a time.
Take care,
Tiffany

[CaroleL]

Thank you all!

I'm just not quite over this yet. Hubby and I just sat in silence today, each with our own thoughts.

22Cyclist: my MRI was done at a Children's Hospital. Neither if these doctors have yet received results. And neither of them has yet received my previous doctors files. They don't know me.

I had one report in my hand to give the doctor, as as for the other report, the nurse had forgotten to give me the request to sign to release to my files. I only signed it yesterday, and she sent the request while I was there.

Dr. Monsters has nothing on which to base her opinion. She saw me a few minutes in the ER. She came in with an attitude (described in another post). She's just a mean person.

My appointment with her is scheduled tomorrow. I'm not going. They can can me on the phone when they receive my MRI results. I'm anxious to see what they find.

In the meantime, I can't stop thinking and feeling horrible. I've been searching for answers since I stopped walking two years ago. It's really hard to keep busy when I'm bedridden.

I didn't mean to go on for so long, sorry! Hopefully I'll be back to my regular cheerful self soon.

Again, thank you all for your love and support!

[lstrl]

Wow, that's disgusting. What kind of dr goes and makes such an assumption when they don't know a thing about the patient! There are so many things that can cause neuro symptoms, and for them to just say it's all in your head is complete laziness!

I really hope your MRI shows promising results so that you can take those and see a decent dr for once.

I'm sorry you have to go through this. Don't give up just yet. Hopefully better things (including answers) are right around the corner for you.

[Cat Mom]

Aww Carole, I'm so sorry this appointment was yet another nightmare for you. I don't blame you one bit for not going to your appt with Dr. Monster, especially since your MRI results weren't available.

What really blows me away is that you obviously have something pretty serious that caused you to lose the use of your legs, resulting in full-time wheelchair and being bedridden. How can they say that this is all in your head! Grrrrrrrrrrrr!

Sit tight and hopefully the MRI results will arrive shortly. I sure hope things will improve for you soon!

Jen

[22cyclist]

Carole: You need to go to that appointment. The hospital sends the results and MRI itself to the neurologist. There has been plenty of time to do that. I am sure she has the results by now. If you don't go, you won't know the results. They obviously are not going to call you with the results or they would have already done it. Go to the appointment. If she is mean, just politely remind her that you are there for her help not her denigration. Ask her questions and if she doesn't answer ask her for a referral to another neurologist. But most of all ask her to explain your MRI, and ask if you need a spinal MRI since you are unable to walk. Be calm and by all means do not leave, just keep asking questions until you get your answers. Remind her that you know her time is important but you have been dealing with this for 2 years and need some answers.

Most likely the history is not going to help in this case. Only MRI results that are positive will help. If your MRI had been positive someone would have called you by now. Your results are called in the next day to the doctor that ordered them. I believe this was her. But still go to the appointment just to find out. Also call the MRI center and ask for a copy of the report. You can read it yourself. But never skip an appointment just because she was mean. You pay her. Just stand up to her. Most times they will fold once you remind them of this. I have seen a lot of mean and bipolar neuros in my time. Just stand up to them. Don't cry, they like that. Just push back.

By all means go to the appointment.
Lisa
Moderation Team

[Seasha]

Carole - ditto to what Lisa says above!!!!!

[polopuppy]

Hi Carole,

I am sorry for what you are going through but I also agree that you should keep the appointment with the neurologist. I had a terrible experience with my neurologist the first few times I saw him. He implied that I was embellishing my symptoms and was quite rude. I decided not to go back to him unless something changed.

Less than six months later, I developed severe double vision and non-stop headaches. Back I went and he took me seriously that time. I had an emergent MRI and LP done that very day and was given a MS diagnosis before I left his office that evening. He was man enough to admit he had made a mistake and apologized. Even though my MS diagnosis was reversed a year later, he has been a wonderful neurologist for the last 8 years. He treats my symptoms, listens to me carefully and works hard to try to figure out what is really wrong.

I think if you don't go back to the monster neuro, she may think that she has scared you off by calling your bluff. Go back, stay calm and collected. Don't mention MS to her or imply that you are convinced you have it. They hate that. You may have MS but you may not. Let her lead the appointment and see where it goes.

Do you have friend or family member that works in healthcare or law that could go with you as a patient advocate? I took a friend with me to all my neuro appointments for almost a year. She always dressed very professionally and carried a pad where she wrote down everything that was said. She would ask him direct but polite questions. The whole tone of the appointments changed as he was never sure who she was and what she did for a living. He was far more attentive and spent more time with me. Could the physical therapist or someone else form community access accompany you on the visit? It would be hard for her to be so rude in front of another medical professional since they could file a formal complaint against her.

I think everyone else has given you some great advice but they need to remember that you are in Canada. Medicine and the patient-doctor relationship is very different than it is in the US. I speak from experience since I am a Canadian citizen, living in the US that happens to have worked in healthcare in both countries. Due to socialized medicine, the patient is not "paying" the doctor for their time. There is a extreme shortage of primary care and specialist physicians in all provinces but especially Ontario, so popping around from doctor to doctor is not an option.

It is very possible that the MRI is not read yet and may not be available for some time, despite what would be normal here. Patients in Canada do not have the same rights to their medical records or test results as we do here. There were laws passed, in 2004, to give patients access but actually getting that access is almost impossible. My mother is not even allowed to have her blood work results. She asked her doctor for them, at my urging and was told they were not for her to see. She happens to live in Vancouver.

I hope your MRI explains what is causing your symptoms and that it will be the catalyst to better care from both of your physicians.

I think you mentioned in a previous post that you had had a spinal MRI ordered by another physician. Did that MRI show anything that would be consistent with MS? Do these doctors have the results of that previous MRI? Have you had any other MRI's since your symptoms started? It would be important to let the neuro know of these studies.

Good luck and please go tomorrow. I hope it will be a better appointment than the last one.

[Jrasted79]

Carol,

Just wanted to let you know its not you, I have been treated the exact same way by many doctors during my journey, I am not yet diagnosed either and have a neuro appointment soon. They can be so mean. I had one doctor literally laugh in my face, I finally stood up for myself and filed a complaint that time. I don't think anything came of it.

I once had a doctor put malingering in my file, here is the full description of that word

Malingering - V65.2 - Product of false or
grossly exaggerated physical or
psychological symptoms, motivated by
external incentives such as avoiding
military duty, avoiding work, obtaining
financial compensation, evading criminal
prosecution, or obtaining drugs. These
may represent adaptive behavior

One my therapist heard this she about fell out of her chair, this is a term for the mental health side of things, not for a medical doctor to use, and to put that in someones record can create many problems like it has for me. I suffer many symptoms and they are aggressive and progressive.

It angers me when I hear about all of us being treated badly. Hang in there and you will be in my prayers!!!!

[MSer102]

Carole that's terrible! You said your psychic - can't you use your powers to find a good doctor?