New appt - please encourage

[swingingwillow]

Hi,

I’m in limbo. My PCP thinks I’ve had MS sx for years. He's r/o a whole bunch of stuff and has currently referred me to a cardiologist to r/o my irregular heartbeat as a cause for my MS type sx.

I’m seeing a new neuro this week who specializes in movement disorders to r/o psychogenic dystonia. I have been referred by my last neuro who thinks it’s all in my head. I’ve waited more than a year.

My dystonic movements are history. However, since last fall I have had poor walk/gait and two incidents of bowel incontinence right before onset and right after. I have had headaches that are unusual for me and an opthalmologist insists that I tell the neuro about these also.

I have dx mental health issues that my psychiatric team believes to be separate from my physical sx.

I am bringing my:
MRIs, the first showing lesion, the second showing none.
CT report which talks about a benign growth in my head.
Report from psychiatrist that talks about my sx looking musculoskeletal or it seems like it could be MS as my symptoms come and go and have been absent for as long as four years.

I probably should remember to tell neuro that my one parent has tremors when holding things like paperwork. Other parent and one sibling used to have restless legs syndrome.

I’m bringing my husband with me as he lends credibility to me and my health concerns.

My neighbours, doctors, nurses are all alarmed that I have not seen a neuro yet as it has been months that I have had poor walk/gait. They would have the same wait time as me.

Please help me know how to act in my appointment. If I get emotional I get judged. If I go in and remain pleasant with little or no emotion I get judged.

If I bring in paperwork listing sx I get judged, but if I don’t I forget and bring up something that’s not important to the appointment like a tremor that lasted for less than one minute. I’m either nervous or have cog fog.

Now here’s a trick question. Should I rest so as to continue to keep my gait/walk sx quiet or should I try and resume the activities that I could do at the end of last summer as this will certainly trigger all of my sx. Sorry if this is an odd question buy I don’t know which way to go - ethics vs reality?

I have a camp of neuros who have said it’s all in my head, I have had a couple of neuros who specialized in research and could only do specific testing and then passed me along when they couldn’t figure me out. I have a psychiatric team that says that my mental and physical issues happen to be separate.

I’m very nervous about this whole in your head thing. And I’m nervous about how to better prepare for a more successful appointment where I am taken seriously.

Advice, support, any comments are welcome.

[22cyclist]

Just be yourself. Don't try to act one way or the other. They will pick up on it. If you cry- just tell them it is just that you have been going through symptoms so long. Don't try to hide it. It is hard to say about exacerbating your symptoms as these will naturally make you more emotional. I would say no and tell them it happens with lots of waking or activity. They will know what that means,

As opposed to this happens all the time. Just be honest with them and you will get the desired results.

When you bring in a list of symptoms, what they are looking for are patterns of exacerbations. This means symptoms that are continuous for >24 hours and last at least two days to three weeks or longer. This can involve numbness, tingling, but most commonly involves weakness to be considered a true exacerbation.

Myoclonic jerks may or may not be considered as an exacerbation. They may be a part of a seizure disorder, but as a group tend to last > 2 minutes - all day. I don't know how long yours lasts, mine, all day, and is brought on by nothing. You need to tell the neuros about it.

Good luck in your appt. Just go in, be yourself, be honest, and you will get answers you will like.

Lisa
Moderation Team

[HellsBells1]

My myoclonic jerks happen throughout the day (and apparently night according to DH) and have been steady and daily for over three months. This is my most recent sx that brought me back to a neurologist again in my long history of trying to find a dx.

I agree that you should just be honest. When I went to see the neuro, I didn't take my anti-epilectic medication that morning just so that he could get a better visual and see the "signs" rather than taking my word for it. But that was only because my family GP told me it was all in my head, and when I started crying, he said he would only treat me for depression. I explained I was not depressed, but frustrated that I can't be taken seriously.

My last neuro appt. went well. I stayed calm. I had my list of sx (and thank god he was willing to listen to any that I wanted to discuss). I tried to be as brief as possible when talking about history (i.e. episodes of weakness, 6 months of foot drop, regular sensory issues, etc.) but as detailed as possible about my current sx.

Don't worry if you get emotional. A specialist should understand that if you have been having sx for a long time without any real answers, that it causes stress, anxiety and emotion.

Good luck. Prepare yourself for anything.

[CaroleL]

Good luck with your appointment! Just be you, and tell the doctor about your concerns.

I know it must be nerve racking but you seem well prepared and hubby will be with you.

[swingingwillow]

Just be yourself. Don't try to act one way or the other. They will pick up on it. If you cry- just tell them it is just that you have been going through symptoms so long. Don't try to hide it. It is hard to say about exacerbating your symptoms as these will naturally make you more emotional. I would say no and tell them it happens with lots of waking or activity. They will know what that means,

As opposed to this happens all the time. Just be honest with them and you will get the desired results.

When you bring in a list of symptoms, what they are looking for are patterns of exacerbations. This means symptoms that are continuous for >24 hours and last at least two days to three weeks or longer. This can involve numbness, tingling, but most commonly involves weakness to be considered a true exacerbation.

Myoclonic jerks may or may not be considered as an exacerbation. They may be a part of a seizure disorder, but as a group tend to last > 2 minutes - all day. I don't know how long yours lasts, mine, all day, and is brought on by nothing. You need to tell the neuros about it.

Good luck in your appt. Just go in, be yourself, be honest, and you will get answers you will like.

Lisa
Moderation Team

Thank you for your encouraging comments.

I'm glad that you could tell me what symptoms to focus on as well. The info on how long things last is very helpful in narrowing down what to bring up so that I'm not talking about everything under the sun.

I feel good about your suggestion to just be myself and to not make my symptoms worse - I was so confused about showing vs telling - it's kind of an ugly question but I was just so confused.

Ironically between a birthday party at our place on the weekend followed by the news that one child had lice when at our house so we are cleaning like crazy so that we can prevent anything that may be in our home, just means that I ended up overdoing it and my walk has worsened.

However, I will tell the doctor that I overdid it over a few days and so I am not like this all of the time so as to give her a solid idea and picture of what I'm currently like because of too much activity.

I am going to bed early, will meditate and rest legs as much as possible and may have warmish bath with epsom salts, plus take pain meds as I want to work on how I feel going regardless of my appointment tomorrow. Then I can tell her what I do to feel better - what works for me in this situation.

Thanks again.

[swingingwillow]

My myoclonic jerks happen throughout the day (and apparently night according to DH) and have been steady and daily for over three months. This is my most recent sx that brought me back to a neurologist again in my long history of trying to find a dx.

I agree that you should just be honest. When I went to see the neuro, I didn't take my anti-epilectic medication that morning just so that he could get a better visual and see the "signs" rather than taking my word for it. But that was only because my family GP told me it was all in my head, and when I started crying, he said he would only treat me for depression. I explained I was not depressed, but frustrated that I can't be taken seriously.

My last neuro appt. went well. I stayed calm. I had my list of sx (and thank god he was willing to listen to any that I wanted to discuss). I tried to be as brief as possible when talking about history (i.e. episodes of weakness, 6 months of foot drop, regular sensory issues, etc.) but as detailed as possible about my current sx.

Don't worry if you get emotional. A specialist should understand that if you have been having sx for a long time without any real answers, that it causes stress, anxiety and emotion.

Good luck. Prepare yourself for anything.

I hear you "prepare yourself for anything" *sigh*. Welcome to our fab country.

[swingingwillow]

Good luck with your appointment! Just be you, and tell the doctor about your concerns.

I know it must be nerve racking but you seem well prepared and hubby will be with you.

Thanks - I know, I'm glad my husband will be with me. He has his own perspective that he hopes to speak up about because he says that I haven't walked normal in ages and that I don't even look well when I'm resting or sitting and he's tired of me not getting the help I need.

Gotta love him for his support.

[swingingwillow]

Hi, had my appt with the neuro and some things were OK and some things not so much.

Went to teaching/research hospital so I got the doctor who is still learning see me first.

She took a history, I gave her a copy of my sx notes which I told her she was welcome to have as I need them as I often forget when I’m in an appt what and when stuff has happened to me. While taking my history she asked me when a certain sx happened and I said that I couldn’t remember and then I blanked.

She snapped at me when I said I needed to get my notes out. I faced her and bluntly stated that right now my mind is blank and I explained three possible reasons why my mind may be blank. I then took the time to take out my notes and reviewed them so I could tell her when a certain symptom started.

She also asked me what I thought was wrong with me and I started to say that my GP has always thought it was MS and then she snapped at me again and said, no I want you to tell me what you think is wrong with you. So I said that I have clearly been living with neurological problems that come and go for many years.

She did some neuro testing. I couldn’t lift my thigh muscles off the examination table to push up her hands. She said push up. My husband finally said “she is!” And the doctor said oh.

She also had me try and track an object or light (sorry can’t remember) and it was painful using my left eye and so I kept rolling my head and pulling my head away. I had to pretend to open a doorknob and my left hand was all weird. I said to my husband what the heck is this?

Then she left for a while and returned with the specialist. The neuro told me that what I have is not degenerative.

She didn’t look at my MRIs and she said you have no lesions. I corrected her and said that my second last one had lesions. She decided to just take what she called the bias of the person who originally read it on my more recent report.

She had notes on the computer from my last neuro who said it was all in my head.

I had to stop her at one point and ask her for confirmation if she was just looking at me from a movement disorders point of view or if she was looking at my whole history. She was basically focussing on my gait/walk and so my headaches and all other stuff was not being considered.

She asked if she could keep the copy of my video of me walking and using stairs as she wanted to get the opinion of some other doctors and those that are in training and I agreed as she said that someone else may have an idea of what was going on with my walk/gait.

She said that she is going to consider genetic testing for something that she didn’t name but would think about it first.

She also said I could have a rare form of a disorder that is brought on by exercise. However, she was not happy with my walk/gait and said that I need to start exercising. She doesn’t want me to walk.

She wants me to do yoga or use those stair climbing things and I balked because I told her that exercise is one of my triggers.

She was concerned that if I don’t exercise that I wouldn’t be able to walk more than two block again or I could get worse. But I had to pry the reason why she wanted me to exercise out of her.

I told her that exercise can leave me with deep bone pain for three weeks and without adequate pain control leaving me in agony and crying for weeks on end.

I said I wasn’t adverse to exercise I just needed her to understand that I was physically fit and slender when I first went to the doctor about my legs hurting many years ago. I’ve tried exercising since and I even used a stationary bike but because I leaned forward on it while pedalling I ended up in a recliner for seven weeks with TMJ or TN - they’re not sure which.

I listened to her tell me that she’s seen psychogenic illness similar to how I present in many people before me. So once again it could be the neuros vs the psychs.

I told her that I had overdone it on the weekend and so I was a bit worse than usual. She had me walk. She had me walk backwards and much to my surprise I walk with a wide, weird backwards movement.

She had me run and my arms did the bionic man thing, my feet were trying to get going and my legs weren’t getting the message. I can’t run.

She tried to pull me backwards by standing behind me and pulling me from the front of my shoulders. I stepped back a couple of times and got a bit shaky the second and third time because it’s like having someone say Boo! behind you. Didn’t like that feeling.

I’m to see her again in a few months. I’m to see a neuro PT to help figure out what exercise will work for me but need to discuss my problems with my GP about this because he knows my history of exercise and pain.

The next day my company said they’re cancelling my benefits and so now I can’t afford a neuro PT. Great.

[CaroleL]

That sucks swingingwillow, I'm so sorry. Don't stand for this, there's got to be something that can be done.

Appeal to get your disability reinstated! Can the MS society help you with any of this.

I'd never go back to that doctor. Get another Neurologist. Maybe friends or family can help you with the cost?

Whatever energy you are spending at being angry and sad, with reason, use that energy to fight this. Anyone with MS is a fighter, you've got it in you. Don't ever let anyone disrespect you like this woman did. Maybe you can file a complaint.

I'm so sorry you have to go through all of this. It must have been an awful experience.

Huge HUGS!!!!!!

[Whimpurr]

Just be honest .... don't worry about your emotions! My best advice though is to see an MS Specialist! I am sure they have "heard it all"!

Good luck!

[SaraL]

swingingwillow....I am sooo sorry this happened to you...''big hug" to you

I makes me really mad to hear stories like this...I would like to go to the dr and ask them if this is how they would like their family to be treated.

the other posts are right...you have to keep up the fight and stand up for what you know you deservice.

Hang in there!!!

[swingingwillow]

Sorry, wrote a nice detailed thank you note and then was told to log out.

So will keep it short and sweet.

Taking a wee break. My co cancelled my benefits knowing that I have mentla health dx and my ins co has never given me disability for my mental stuff so the physical stuff is just an extra fight.

Thank you all for your words of encouragement but will see tou on the boards.