Possible MS with existing Chronic Illness

New diagnosis and before diagnosis
1

Hi, I’m quite new to this as my GP only suggested MS in the last week or so.
I have a neurologist appointment booked (not until Feb) which will be my first proper conversation about MS as I’ve had no MRIs or anything previously.
I’ve been advised to make a list of all my symptoms but I’m struggling to work out what counts! I have previously been diagnosed with a myriad of other chronic conditions including fibromyalgia, IBS, GERD, Inappropriate Sinus Tachycardia, Vestibular Migraine, and Raynaud’s. It’s a bit of a mess.

My real question is how I can tell the difference between my symptoms and how do I stop the neurologist from blaming my previous diagnoses?
This is an issue I’ve had before when trying to seek help and it’s so down-hearting to be brushed off.

2

Absolutely refuse to get into a discussion about previous diagnoses. A Doctor should make a diagnosis based on the symptoms you present.

I got misdiagnosed for 10 years by being “helpful” and giving whichever Doctor I was in front of, my account of what I’d being told previously. It let each one of them off the hook of making a fresh evaluation. If necessary and to be polite, explain why you are not going to provide background.

3

Hello

What a connunudrum. Not only for the neuro, but for you too.

The problem is that when you first see a neurologist, you’re asked to detail what symptoms you have that ‘have brought you to them’. The time you have for an appointment is relatively limited, so it’s a case of not reeling off a list of 50 possibly connected symptoms because s/he just won’t be able to take them all in (and I’m sure you could detail many many possibly related symptoms). Nor can you just hand a neurologist a nicely typed out list of symptoms in order of body part or ranked in importance! They want to hear it from you. (Omg I wish I’d been able to write a list of symptoms, add to it as time passes and just give the list to each new doctor, they’ve been so many over the years!)

I think you need to think about each of the diagnoses you’ve been given over time and consider what symptoms have given rise to those diagnoses (if in fact you know). Assuming there’s been overlaps of symptoms, then they’re important to put on your list. Consider what could be attributed to your neurological system (again assuming you know) and add these to your list.

Think about what made your GP refer you to the neurologist this time (assuming you know again). Add these things to your list.

Lastly, have a think about what really bothers you, symptom wise. Add those to your list.

Then review your list, see if you can group symptoms together, consider what might be of primary importance. See if you can bring your list down to maybe 10 items. Perhaps in relation to body parts (eg, migraine and other brain related symptoms, Reynauds and other symptoms of numbness & tingling type sensations of your limbs, weakness, pain etc).

Perhaps you could think about how best to present yourself to the neurologist in order to demonstrate what you’ve been experiencing. Your main emphasis should be on making it simple for the neurologist to understand your collective symptoms, without reference to prior diagnoses.

The neurologist should then conduct a thorough physical examination to establish exactly what neurological signs you display that may lead him/her to make some preliminary judgement call on what may be affecting you. Subsequently, I’d expect you to be referred for tests (again with an assumption that s/he finds cause) to establish a neurological diagnosis if that is the result of the tests.

I hope I’ve made what I’m suggesting clear, what with the large number of assumptions (!). Hopefully too, you can come up with a good list of symptoms to bring to the neurologists attention. I think asking a trusted friend or family member to look over your list and help you to clarify problem areas would be a good plan.

Sue

4

Good advice from Sue, as always.

The pattern of the symptoms is also important - i.e how long they persisted, and if they gradually improved, or worsened over time.

Fleeting sensory symptoms are probably the least important to mention, but if you’ve had sensory symptoms that have lasted a while - a few days to weeks, months then include them.

And if a group of symptoms came on at about the same time, treat that as an episode.

So really you need a simple date-line history of events of symptoms.

5

I’ve kept on computer my lists that I made for when seeing a neurologist (there are not many, that has to be said, so just covers the really big events), and it is interesting how inaccurate my memory turns out to be! Things I’d completely forgotten about, but which did cause significant problems at the time. My neurological symptom history goes back 40 years, and the first 25 years of that were just stored in my memory) so saving the info that I started to draw up about 15 years ago, (when I made my first list on computer) has turned out to be useful - I think has kept it fairly accurate!

6

@Ziola makes really important points about a timeline and groups of symptoms.

I’ve got an online diary that I’ve been keeping for 10 years. Just like Ziola, my memory is extremely faulty. Writing things down is vital for me. Even things that happened a few months ago vanish from my consciousness. I discovered yesterday that I’d completely forgotten a colorectal test I’d had in June (a sigmoidoscopy). It was only through searching for the term ‘sigmoidoscopy’ in my diary that I realised, then dredged up a memory. I knew it seemed familiar and thought maybe it was a test I’d had about 4 or so years ago! (I only looked for the word because I was being called for another such test.)

Sue

7

Hi

I just had my first appointment with a neurologist after being referred by my doctor who suspected ms.
He asked me to give him a time line of symptoms and how long they lasted. I literally kept a record of everything odd I had experienced and thought it was upto him to determine if it was important or relevant. I kept a we note book with me and wrote stuff down as soon as any symptoms happened, i even wrote it down on scraps of paper when i didn’t have my note book to add it in later. I just didn’t want to leave out something because I thought it didn’t matter when it could end up mattering. There was a few things that I listed that he thought weren’t connected but he was really nice about it and said its always best to be as thorough as you can be.
Hope this helps x

8

Well done! Sounds like you found a good one whom worked up a diagnosis from first principles :+1: