Forum

update

Have now managed to get a nureo app for 29th aug , iam getting scared as i have started to get problems with my fingers hardly able to hold a cup, problems with speech and back pain .

It seems harder and harder to function and as soon as i get used to having symptoms more appear , the nuro secretary called to give me app it got too much and i started crying uncontrollably on the phone ,i feel so embarrassed for crying to her but it just came out .

Not even sure how to begin with talking to nuro .

Hi Destiny, sorry you are having such a hard time and awful symptoms. Thankfully you have a neuro appointment quite soon (although I know it seems like ages) and will hopefully get some help.

Don’t worry about crying on the phone to neuro secretary. Unless it was a very first day on the job (which I doubt!) she will be used to it. So will the neuro. It’s a very emotional time for people either waiting for dx or just been dx… and tears are a very normal response. It’s part of their job. I know what you mean about uncontrollable… the times I’ve done it! Nothing comes out except sobs… terrible… but loads of us have done it so please don’t feel embarrassed.

Take a list of symptoms to neuro… it’s so easy to forget things when you’re there… and if you are unable to speak you can just hand him/her the list. Is there someone who can go with you? That always helps and again, if you can’t speak they can speak for you.

Good luck with the appointment. I really hope it goes well for you. Try not to stress out about the appointment. Remember, tears are normal for anyone in your situation and health professionals are used to it. They see it every day.

(((((((((((((((((hugs)))))))))))))))))

Pat x

Hi pat ty for replying ,as its my first nuro app iam not expecting a dx as i know it can take months or even years to get one ,i know i have been very lucky to have a nuro app so quickly , although its only the start of my journey trying to get some sort of diagnoses ,its been years of symptoms and being ignored so it seems longer if that makes sense . will let you know what nuro says .

ty so much to everyone on here for giving me info and helping me by giving me to outlet x

There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam (where he/she checks your reflexes, etc). The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.

Here’s my standard answer to how to get the most out of a first consultation:

No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)

  • Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009: optic neuritis (recovered); September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.

  • Take a (short) list of questions if you have any.

  • Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.

No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.

No.3: Be honest. Do not exaggerate and do not play things down.

No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.

No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.

I’m sure it will be fine. Try not to worry.

Karen x