A few days away from first Neurologist appointment"

New diagnosis and before diagnosis
1

Hi there everyone. I’m new to this site and this is my first post, so please bare with me and apologies if this goes on a bit!

As the topic title states, I have my first appointment with a neurologist this coming week after finally being sent to one by my GP. I’ve basically had 7 years of feeling unwell, to varying degrees. Good days, good weeks, good months to poor days, poor weeks, poor months. You get the idea. It all started with a really bad cold and to be honest, I’ve never felt 100% from that moment on. What followed were eye sight problems (white dots, flashes, blurred vision), bowel and stomach problems (recently been diagnosed with GERD with a sliding hernia), bladder problems (needing to go to the toilet very often to hardly going at all), depression (mood swings), weakness and numbness (legs and arms), extreme fatigue (to the point where I’m struggling to get out of bed), a recent development of motion sickness (has happened on 4 occasions in two years after long journeys. I’d never suffered before this), heat intolerance (get warm and start burning up very easily and then take ages to get back to a normal body temp), a strange feeling in my legs like they’re getting covered in running water and just generally feeling unwell. Another thing I’ve noticed is that I appear to get extremely drunk, very quickly. I’m talking falling over, down stairs, being very unsteady on my feet etc. This is not me at all and has only started happening in the past 12 months or so. My symptoms are always 10 x worse the following day too. Due to all this, I’ve stopped heavy drinking altogether as it’s just too scary the days after and embarrassing on the actual night.

The main problem has been that I only ever suffer from 2 or 3 of these symptoms at any one time, so my GP has just been sending me to various specialists who’ve found virtually nothing wrong with me. Very frustrating when you know there is something wrong, as I’m sure all of you can relate to. I’ve had so many blood tests that have all come back normal or negative (HIV, full immune system check, CBC etc etc) along with endescopys, CT scans, xrays, ultrasounds, stool samples, sputum samples, breathing tests…again all normal.

At the moment I’m regularly suffering from respiritory problems (shallow breathing, fast breathing, heavy chest, coughing up phlegm) along with dizzyness, numbness in legs and feet and feeling like I’m going to fall over or collapse… I was sent to a chest specialist in August who, after sending me for chest xrays, CT chest scan and a whole load of blood tests again (full immune system check), could find nothing at all wrong. He said there wasn’t even anything worth exploring further. So back to my GP i went and she decided to send me to a neurologist to explore “possible Multiple Sclerosis”.

So this is the stage I’m at now. After finding this website, I thought it would be worth posting to see if anyone else has had to go through a similar thing to me and what to maybe expect when seeing the neurologist? Am I likely to be waiting more months to get a diagnosis, or will it be a bit quicker due to the amount of things they’ve already ruled out?

Anyway, thanks for taking the time to read this and please fire away any questions or info you might think are relevant. It’s also good to know this forum exists as it’s very difficult to talk about this to family and friends, before getting a confirmed diagnosis.

2

hello and welcome to the forum,

the first visit to see the neuro is always daunting but nothing to worry about. they will possibly examine you and ask you about your past medical history. the best way to do this is to make a short list of your symptoms stating the worst first. do not give your list to the neuro as they will glance at it and you will forget what you had put on it. make it a short and concise, then they will order any tests they feel need doing. try talking to your family and/or friends as it’s good to have support even though you haven’t yet got a dx. i wish you the best and do let us know how you get on.

janet

x

3

Hi Janet. Thanks for the reply! Yeah it’s daunting. This will now be my 5th specialist in recent years so I’m well used to it I guess. I’m now at the stage where I just need to find out what’s wrong with me. It’s the not knowing and the fact I can’t explain to people why I’m not well. That’s causing a lot of stress and anxiety. It sounds odd, but I’ve been getting dissapointed when certain test results have been coming back normal/negative. I’m worried people think I’m making this all up.

Thankyou for the advice. I had done a symptom list, but will change it and put the symptoms in order of severity. I will be back and let you know the outcome.

4

Hello and welcome :slight_smile:

Focusing on the main symptoms is good advice, but not at the risk of missing any patterns which, given how long this seems to have been going on for in your case, may be very important. So, personally, I would say what you need is a concise summary of your relevant medical history, in date order and focusing on the main symptoms. It’s also important to say what symptoms got better, improved but you still have them or have been ongoing.

I’ll copy an old post of mine at the bottom of this - it might help.

From what you’ve written here, I would say that your symptoms don’t sound very MS-like, but I’m not a neuro and MS is a highly variable condition so I could be wrong. Let’s hope that the neuro can work it out!

Karen x

These are the things that I think help at 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 (recovered): optic neuritis; 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.

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. 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.

5

Hi Karen,

Thanks for the advice. It’s much appreciated. I’ll update after I’ve seen the Neuro this week and see if he can put a finger on what could be the cause of this.

Thanks again. x

6

Hello guys.

Just an update after my appointment today.

Firstly, nice specialist. Took the time to listen to everything I had to say and also read through a copy of my “symptom check list” and “brief medical history”. Thanks to Janet and Karen for reccomending this, it helped him out a lot and also helped me remember everything! A good thing with a memory this bad :slight_smile:

After writing everything down,he performed a neurological examination. I’m guessing this is standard where they check reflexes and eye movement. His conclusion was that the left side of my body was reacting differently to my right side. He said it was more abrupt?

After reading through all my recent tests and the results, he said this could be MS, but he’s not 100% sure. He pointed out it wasn’t worth doing any further blood tests due to the amount and specific type I’ve had done recently. Instead he’s ordered an MRI scan of my brain and spine with another appointment to follow.

So, I guess that’s it for the next few of weeks. If anyone would like to comment on any of the above, then please go ahead. I’ve got a bit more waiting time before I find anything concrete out - which was to be expected.

Thanks for reading,

x

7

Sounds like a good appointment :slight_smile:

Hopefully the MRI appointment comes through soon and provides some answers.

Kx

8

hi, so pleased it went well for and you will now be having a neck and spine mri. once that’s done answers should follow. wishing you the best. you’re now in the right hands.

janet

x

9

Hi everyone.

Just a quick update:

I had my MRI yesterday. I was quite impressed that the appointment came so quickly as I was expecting to be waiting a good while longer. Anyway, I had no idea it would be that claustrophobic! It was quite a shock actually and it took a few minutes to compose myself after it started. I was in for just under an hour as they had to re-take some of the images. Hopefully I’ll get the results back soon.

Also, I was sent a copy of the neurologists report (that was also sent to my GP) and he’s said that I should also have a VEP test to check for optic neuritis. He did check my eyes, briefly, at the initial consultation, but didn’t mention anything about this test at the time. I’m guessing a fair few people on here will have had this test, who could perhaps shed some light on what it involves? I’m wondering whether the neuro has maybe seen something when checking my eyes or is this simply another standard test at this stage?

Thanks again for reading and any comments :slight_smile:

x

10

It’s a pretty standard test and often shows a problem in MSers with no apparent vision problems so can be a useful. It’s very straightforward. They stick electrodes to your scalp (be prepared for a bad hair day afterwards!) and then you have to sit and stare at some very boring black and white images on a monitor. Nothing to worry about at all. Karen x

11

Thanks again Karen. Much appreciated. My VEP is booked for the 9th April so again, not too long to wait. Staying on the ‘waiting’ subject, what’s the typical waiting time for receiving the results from the MRI? Is it likely my neuro will be waiting for the outcome of the VEP so he can determine a possible diagnosis and then talk to me about both results, at the same time?

12

No such thing as a typical waiting time, sorry. The images are available immediately, but the report takes as long as the radiologist’s in tray takes to clear and the secretary takes to type it up and send it, and then it has to go through the neuro’s in tray too. It might take a week, but it might take a month or even more.

I can’t tell you what the neuro will do about the two sets of results either, sorry. Some would send a letter after each, some would wait.

As you say, not too long now at least.

Kx

13

Cheers Karen.

I had a feeling that would be the case. I do have a scheduled follow up appointment, with the neuro (in the middle of May). But I’m unsure if he’s just going to wait until that appointment to go through everything with me, or contact me earlier with various results etc. I would have asked him at the time but the unexpected VEP test has thrown me. Sit and wait time :slight_smile:

I will update as and when.

14

Letter arrived today from the hospital. Just confirming that an appointment has been made for me to see the neuro (a different one to the Dr I originally saw). No mention of mri results but I did notice this appointment is nearly 3 weeks earlier than originally scheduled (20th May changed to 1st May). Doesn’t mean much I imagine, but thought I’d mention it. Had the old ‘water on legs’ symptom today . It’s as if a water bomb has exploded in my pocket and the water starts running down my leg(s). It’s a weird one as I don’t find it particularly unpleasant. It’s just a bizarre feeling. Anyone else had this?

15

I haven’t had that one, but I’ve heard of it on here. Weird indeed!

No point in reading anything into the appointment change I don’t think. At least it moved closer and not further away :slight_smile:

I once had an appointment moved from August to January! Oooooo, the phone calls that ensued after I heard about THAT! :slight_smile:

Kx

16

I use tofeel like my shoe had water in it like it had rain and my foot was squelching in it!

Good luck with the next review

Reemz

X

17

Im also expecting my first vist to a neuro in the nest few weeks… Im going to take up tje suggestion of writing a list, thats a great idea, Ive had similar symptoms to yourself (except the eye problems) over the last 5 years but like you say because they dont all happen at once I also keep being told ive just got a virus as my numerous blood tests come back fine!

I just hope they decide on some plan of action as at the moment I feel like im being told possible MS because basically they cant think of anything else it could be :S and im fed up of being off work (never thought id say that!)

18

L011ip0p, it sounds like we’re on a similar path. A list is definitely worth taking to your first appointment. Make sure you take a copy for yourself and another copy for them to look at (and keep). I also did a list of every test I’d had done with the results of each. My neuro found that useful and included it in his summary that was sent to me, via my GP and Neurophysiologist. Good luck and let us know how it goes!

Thanks Karen and Reemz.

19

I have my first neuro appointment on 4th April too. Rizzo’s post above about what to expect/do for the first appointment is excellent, thank you for posting!

I’ve not suffered for as long as a lot of you and to be honest, most of my symptoms seem to have resolved at the moment. Whether I’m better or whether the 25mg of Amitriptylline are doing the job I’m not sure. In brief, my symptoms are almost entirely isolated to my left side. It started with numbness in the left side of my back accompanied by very frequent pins and needles. That was approx 16 months ago. Over the course of a year, it spread down the whole of the left side of my back, into my left arm and hand, with increasing pain and weakness. I even suffered with weakness in my left foot for a while (after I’d started on the Ami). But, touch wood, everything seems to have improved in the last few weeks.

I am intrigued to see what the neuro has to say and what tests he wants doing. I had an MRI cervical and thoracic spine done in December which was reviewed by a musculoskeletal specialist who saw there was no evidence of cord compression, but I wonder whether the neuro will review it differently or just order a whole new scan.

I’ll write my own post after my appointment but for now, thank you for all the info I’ve been able to read in this one.

Nat xXx

20

right list of tests… thats another thing i’ll do!

It still baffles me how bad the communication can be in the NHS lol… having to keep explaining over and over who I am and whats going on and yet large companies eg sky, you can ring up and they know where you live, and all your previous addresses and dates of moving, your DOB, nationality and practically everything else about you at the click of a button.

Maybe im just grumpy (another symptom?!) but things like that really annoy me!

Thanks folks, id be interested in hearing how your appointments go, mine has now been delayed untill the 1st af March! Which is also the day im due to start back at work, great…

Lauren x