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cindys601 11-01-2007 05:44 PM

Getting Anxious~ Help With Talking To Doctors Of Sx
Nikki, you had suggested we start a thread on helping people discuss they're sx and addressing issues with they're doctors and the best way to go about this. I need some help and support so I figure this might be a good time to start this. LOL

My neuro appointment that I've waited 3 months for is getting close and I am trying not to work myself up too much in antisipation but after my last neuro from hell appointment, I am worrying that my explanations of my sx are not good.

As you all know, sx come and go. I liked Nikki's ideas on this in a past thread and hoped we could all offer support here and help people that are struggling with a dx communicate better with the doctors they see.

Here I am, gotton through the summer, and it was BAD!! The cooler air is helping me almost feel a bit normal again. The tingling has settled down some what , thankfully. The fatigue is lessened and the brain seems a bit clearer with cooler days but I have learned to slow down and not overdue things and tire out. I still do get to a point that I just have to close my eyes NOW because I'm so tired when I overdue at work.

My biggest complaits at this point is fatique and weakness in my legs. Today I had to go downstairs to my moms (I live on the 3rd floor) When I got down, I realized I had the wrong keys and had to go back up. Then down again. By the time I got 1/2 way back up, I was on my hands crawling!! Thats just not me!!

My newest aggravation is my left face and ear stings like I was slapped really hard. And I have these weird feelings in my legs and other parts of my body (feet arms stomach) that I don't know how to explain. It feel like something is flicking me from the inside. I explained this to a nurse that I know and she called this perculating legs. Can anyone tell me what this is??

Of course theres also my loss for words and saying them all wrong. I Know what I'm thinking but it won't come out. I'll point to things or describe things so my family can guess what I'm tring to say. Sometimes, I feel tongue tied and slurred. Almost a drunk feeling. I feel like I'm living in a different body (maybe a turtles LOL), I'm so much slower moving, like my legs feel heavy. If I stand for too long, my thighs get very shaky and I have to sit.

See, theres just so much going on, I just want to know how to break it down to the most important things so I can get this doctors attention.

Hopefully I can get some advice on how I word this and with that, help others too!!

Thanks so much~


MSNik 11-01-2007 06:13 PM

Re: Getting Anxious~ Help With Talking To Doctors Of Sx
Hi Cindy...nice to be remembered. Im glad that my original post to you helped inspire you to think harder on this! Reading what you wrote tonight, I dont think you are going to have a hard time telling your doctor what you told us- but this is what I would do:

(using your post as a guide)
Fatigue- especially noticable when overworked mentally/physically at work, or when trying to do normal physical activity such as walking up/down stairs. Overall feeling of sluggishness.
Tingling- noticed since the cooler weather has improved, but spent all summer dealing with it. (note: does hot showers also do this to you?)
Facial Buzzing like a stinging sensation, mostly on left side
Some intermittent cognitive difficulties especially with finding the right word at times.

This is of course a very brief list, and NO DOCTOR is going to read it, however by listing things this simply for yourself to use as a reference, when they are taking your history, you can refer to it. You dont want to overwhelm a doctor with every single symtom you have ever had...but you do want to touch on the most recent, most bothersome and most unexplainable....this will give him or her a place to start asking questions. YOU should have the answers to : when did this start? Does anything make it worse, better? Have you taken any meds/supplements for this and did they help or hurt ? You should also have every single test, result and film you can get your hands on with you...

I think, and this is my own personal belief, that people get more overwhelmed when they walk into a doctors office EXPECTING to get answers or worse yet, being SURE of what they are going to hear, but not hearing it. Its a doctors place to both dx, but [B]also[/B] rule out everything, and MS being so hard to dx, not everyone hears what they want/expect to hear each time...
Keep it simple Cindy. Keep your list short and to the point- be able to answer questions about who you have seen, why, able to say what you are feeling, for how long and what aggravates it or helps it..but DO NOT think that any doctor is going to read this list....
Also, knowing that we as MSers and Potential MSers tend to forget things, write things down. What vitamins/supplements and the quantity you take- what smaller things are bothering you such as have you had eye pain or back pain- anything that you want to remember to mention..but the key is DONT MENTION everything until the doctor has had a chance to evaluate you...then, ASK QUESTIONS! I think this is going to help you by giving the doctor a chance to do their job, and to make sure that when you hear what he has to say, you get a chance to also clarify things bothering you.
I hope this helps you and doesnt sound like I know it all...I dont know it all, but I do know from my own GOOD experiences, that this is what has helped and worked for me!
Good luck. Dont be nervous..this is your chance to try again...sometimes, in this world, it takes more then one try!

cindys601 11-01-2007 06:28 PM

Re: Getting Anxious~ Help With Talking To Doctors Of Sx
Hi Nikki~

I knew your words would help put this into perspective. You always have a way of putting things into place. This is one of the reasons I wanted to start this thread.

We do go to a dr's, anxious and looking for answers. I know, myself, we spit out everthing thats been going on and it sounds overwhelming to us, never mind the dr.

For myself, I don't expect to find an answer on the 6th. I just want to be taken seriously and I want the proper tests to be ordered to rule out everthing and anything. Knowing this is something, I just want to start my journey and start to figure this out. Whatever the outcome, I'm prepared. But I definately will not settle if i'm told this is nothing. Because I know my body and this just isn't normal. I am a firm believer in standing up for myself and following my gut!!

Thanks, Nikki, once again~ Cindy

MSNik 11-01-2007 06:41 PM

Re: Getting Anxious~ Help With Talking To Doctors Of Sx
You have the right attitude. Go in there hoping for answers, and respecting what you are told...but at the same time, also go in there calm, cool and collected. The list will help you to do that. Its true that we tend to go in and spit out everything which has happend and is frustrating us. Lets face it, this is a most frustrating time in our lives, and an even more frustrating disease. Its never the same for too long. Symtoms come and go daily. Some last way too long and when we finally get to see that doctor, they dissapear! None of it is fun. Kind of like the car which stops making 'that noise" when we take it to the mechanic...

But whats important is staying focused and being able to speak and say what you mean. Its horrible that some doctors refuse to believe that patients can have so much going on and be on the verge of "losing" it when they are in the presence of the very person they are counting on to help them....but (and again in my opinion) this is usually due to how the patient presents themself. By presenting yourself as organized, and yet being honest and saying you are scared- you are then giving the physician the ability to be the authority...and lets face it, they did go to school a heck of a long time, they do deserve that credit. Giving them a chance to do what they DO, is the only way we as patients will ever get anywhere....but honestly, presentation is key. Go in there prepared for anything...remember that you have the support of all of us here and PLEASE let us know how it goes!
and, youre very welcome.

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