How Long is Too long a time line?

[Udkas]

Hi Guys,
I have now typed up a summary of my two last "episodes" one that I feel was migraine and the latest.  I have tried to condense it but struggle.  I have tried to keep it with just info; of time I visited Dr, how long I was on antibiotics for etc. and pathology results etc. this is in relation to the UTI that I thought I had, also I have described my bladder probs, and I have separated it into easy read paragraphs but it still takes up almost two pages on A4.  I have tried not to get too descriptive of symptoms (figured if he wanted to know more he would ask), this is all I will be taking to my appointment, is this too much to expect him to read. It will only take a couple of minutes to read but I don't want to be seen as obsessive about things too.

I realised today when I looked back through my diary that I have been seeing this neurologist for two years now and he still has maintained it is Transverse Myelitis.

Udkas.

[HVAC]

The four Neurologists I have seen do not like time lines. I have a symptoms tracker I can refer to if they ask me.

The best appointments I have had were the ones where I did not even fill out the symptoms, problem form my Neurologist gives you and let him lead with the exam and asking questions.

Alex

[Erin0313]

Kathy,

   Sorry I am tuning in late (as usual, lol). I am SO happy that you are going to see the neuro!!!! I'm sure that your time line is fine. If they think something isn't important then they will pass over it but they might ask more questions and that will be good.

There is truth to not getting over emotional at the doctors office but there is a fine line. If you seem completely detached and "in control" they often think that things can't be that bad.

Years ago before I was dx I was told that if I was really hurting/suffering like I said then I wouldn't be able to act and talk the way that I was while recounting my experiences to the doctor.

Now after several years and lots of positive test results they compliment me on being strong and smiling even while I suffer. It sounds very messed up but sad & true.

I hope that they find answers and treat you well. I will be waiting to here the news.

Hugs,
Erin :)

[Udkas]

Thanks again for input, I have the final copy drafted, I do feel I have put almost as much effort into this as a resume, but it is important for me to make sure my neurologist is aware of my problems, but I didn't want to be seen as obsessive either but when your perineum burns and your bladder fails it sends you that way, desperate for relief and answers.

On a good note I have the last appointment of the day and I was told he will be able to spend as much time with me as I want! Yay.  I spoke to his nurse and she said bring my 'book" and that he would be happy to read it, I knew he would.  I have condensed it.  The nurse told me to include dates (which I hadn't done), so he knew how long I had been off antibiotics etc.  I feel good about going now, I think it's the right thing to do.

Thanks Guys,
Udkas

[supermum_ms]

Hi There,

For my first appt, id written a 2 page list of what i was dealing with, in bullet form and with brief emotionless descriptions. My neurologist read it all, said it was great and very thorough and quite helpfull, he asked many questions based on what id written. There is no way I would of been able to say everything and it was important for me to have what i wanted him to know, written in my words and not his interpretation of what he thought i was saying. In a lot of ways I treated my appt just like it was a job interview, my symptoms list was my resume and the exam was my demonstration of suitability, showing emotion can cloud the issue and its better left out of the room.  

At the time i knew nothing about time lines and didn't provide much although i did include the episode which started me loosing my legs. I have a follow up appt tomorrow, i will be taking with me the tracker ive filled out (located underneith the health page, top right of your screen) which lists the symptoms i've had going back to mid july which is when i started making notes. I have also written a time line of events that required emergency dept visits, these are also the only times i've been to emergency, they are related to my current condition, and none have ever been explained. Again in bullet form, Age, syptom, which hospital, suspected dx but no test provided dx, length of time it took to resolve. Its factual, precise and emotionless.

I havent written anything that would make this doctor think i was stressed or depressed, nothing to derail this train. I want answers and i expect to get it in detail. My brain is damaged and i dont really need a neurologist to tell me that, i know it already and if he knew me he'd know it too but i need his help and thats going to take patients and time.

Hope it helps

Cheers......JJ

[Karen99]

I think your hubby could very well be correct in that your "migraines" are a symptom.  

Little wonder you are having some leakage with all the burning.  That in itself is disjointing.  When you get relief from the burning, you'll feel so much better.

At some point ask your neuro if Transverse Myelitis adds additional symptoms over time and wouldn't it be prudent to MRI your neck and brain again.  Ask if your course of TM typical?  

Ask him what you want to know. (could the "migraines be a symptom? does TM add symptoms as time goes on? what can I do about my bladder?)   And ask him want you want.  (relief from pain, MRI, his thoughts on what is going on with you, a referral, medication suggestions, whatever is of concern to you.)

It is good to put info of your symptoms and timeline into the hands of your neuro.  Ask direct questions once he's done his stuff.  

I am fairly certain that you have a neurogenic bladder that is causing frequency, urgency and an infection that comes and goes along with your use of antibiotics.
Migraines DO NOT cause burning as you describe, electrical shock pains or banding sensations.  TM probably could.  I know MS does.

I am so glad you are going to see him.  Hoorah!



  

  

[Udkas]

Guess what I am glad I am going too.  I think I am excited about going as my bladder is not working properly!!!  I am back to not urinating properly I feel like I need to go but when I get there nothing much comes out, but I don't think this is the old urge thing, I actually do feel like I might be retaining urine.  My perineum still burns and I am still convinced that there is some sort of underlying infection, surly this burning can't be neurological (I guess it can be) I know I am getting other neuro symptoms as well but I still feel there might be some other cause that is flaring my symptoms.

In my time line thing I have only put the dates and the results of all this urine testing, like how long I was on anibiotics for etc. and that there was the protien, leucocytes etc. find in urine.. I have kept symptoms thing brief but I have also included that episode of tongue numbness in the time line as well as Quix thought it sounded like MS more than migraine and so did my GP.

I also described the burning in my back because that is new. I will try to condense again...

I am feeling positive about going as I want help for my problems, I don't think I have MS but there is something wrong!  I have gone too many years now with normal tests I would be surprised if it was MS.  I do think most of my problems are migraine related (aura without the headache), but he always says he doesn't think so.... but I know it brings on my symptoms, hubby reckons the migraine is one of my symptoms, I don't think migraine would affect the bladder.  I don't think it is anxiety related and nor do any of my doctors.. but who knows.. I don't think I will get an answer on Monday but maybe a referral for the bladder or some idea on his thoughts.

Sorry if this sounds disjointed I am trying to justify myself going!! Will let you know how I go. Oh and on the bladder I had the other problems of some leakage as well yesterday... mmmmmmmmmm yep glad I am going .

Udkas

[Karen99]

Hi.  Keep in mind that as the neuro is walking in with your chart, he is doing a quick refresher in his mind about you.  On top of that he is then going to have to juggle new info with what you give him.  

See if you can shorten it but don't leave symptoms out.  If it can't be shortened then he'll have to deal with it.

I am so glad you are going to your neurologist !!!!!!!!!!!!!!!!!!!!!!!!!!!  

[essdipity]

As you already know, these things should be as brief as possible. Two pages max, but one is much better psychologically. Don't use too many adjectives, and don't speculate on what might have caused what. Just the time period involved, what the symptoms were, what you did about them, and what happened (e.g., symptoms resolved, or remain).

Our Health Pages have good info on timelines.

ess

[diemyn]

If you went to all that trouble then I'd get another doctor if he won't read it.