Off to GP tomorrow - does this symptom list make sense folks?

New diagnosis and before diagnosis
1

Hello All,

Well, I’m off to see my GP tomorrow morning to see if he has my MRI results yet.

Since I have been feeling a little more human recently I have managed to think more coherently and have thus made up a list of what has been going on. 'Tis most unusual for me to make any sense - even at the best of times - so I wondered if you nice folks would just have a quick look and see if you think if

a) This list makes sense

b) It is going to help me in achieving some sort of diagnosis in the long run.

I don’t want to put him off with a long list or get some sort of ‘loony bin / hypochondriac label’. I shall have to explain that I have had time to think through things logically. I guess he’s going to wonder why I didn’t give him this list sooner but I hope he’ll understand that when you are feeling all this weird stuff going on, it is hard to get any sense of what it is you are experiencing from one day to the next. I can and have easily described each sensation previously, it’s just the order of things I haven’t been able to provide before.

Here goes…

April / May 2011 (First onset of any problems at all)

V sudden loss of sensation in feet (esp in mornings). Fizzing / crawling sensation in feet.

May 2011

Pain in hands starts v suddenly. (Have already described this pain to him)

June 2011

Fizzing/crawling loss of sensation in feet much better.

July 2011 to Early May 2012

Pain in hands continues - becomes increasingly worse, v.v.v.v painful at times

Dec 2011 / Jan 2012

Cramp, numbness in hands and arms. Localised to either right or left side but swaps from one side to other and back again. Stays on one side for days or up to a week then swaps to other side.

Feb 2012

Pain, crawling and fizzing sensation in feet returns gradually then goes after about 4 weeks

Early / Mid May 2012

Pain in hands and feet goes!

V sudden onset of Myoclonic jerks. Constantly all day and most of night for nearly 2 weeks, then lessens though still frequent for another 4 weeks then almost goes entirely (suddenly improves).

Legs become stiff and weak - hard to walk at times

Cramps in large areas of body (entire right side)

Crawling / fizzing sensation in feet / legs / arms almost throughout entire body at times.

Mid June 2012

All symptoms lessen quite suddenly, very few jerks, fizzing sensations better, not much in the way of cramps, still no hand pain.

V. v. v. v. fatigued - like never before - but feel loads better.

July 2012

Felling better.

Legs stiff and weak at times.

August 2012

Hand pain from June 2011 seems to be returning gradually, when pain strong brings on myoclonic jerks which it never used to do.

Legs stiff and weak at times still.

So what do you think then guys?

Will that be of use to the GP or do I sound like a loon?

Thanks for reading, you are all stars (very patient ones).

Snorkle x

2

Only a suggestion (it’s fine as it is I think):

April / May 2011 (First onset of any problems at all)

V sudden loss of sensation in feet (esp in mornings).

Fizzing / crawling sensation in feet; improves after about 6 weeks.

May - July 2011

Pain in hands starts v suddenly. (Have already described this pain to him)

Becomes increasingly worse, v.v.v.v painful at times, especially in July.

Dec 2011 / Jan 2012

Cramp, numbness in hands and arms. Localised to either right or left side but swaps from one side to other and back again. Stays on one side for days or up to a week then swaps to other side.

Feb 2012

Pain, crawling and fizzing in feet combined with gradually returning sensation.

Feet become numb again after about 4 weeks.

Early / Mid May 2012

V sudden onset of Myoclonic jerks. Constantly all day and most of night for nearly 2 weeks, then lessens though still frequent for another 4 weeks then almost goes entirely (suddenly improves).

Legs become stiff and weak - hard to walk at times

Cramps in large areas of body (entire right side)

Crawling / fizzing sensation in feet / legs / arms almost throughout entire body at times.

All symptoms improve within approximately 4 weeks.

Mid June 2012

V. v. v. v. fatigued - like never before.

July 2012

Felling better, but legs stiff and weak at times (ongoing).

August 2012

Hand pain from June 2011 seems to be returning gradually, when pain strong brings on myoclonic jerks which it never used to do.

The fact that your symptoms are mainly in your extremities and that your symptoms switch sides strongly suggests that this is not MS. It sounds more vascular to me, but I’m not a medic. Please listen to your GP’s recommendations, keep an open mind and don’t set your heart on a neurology appointment; it may not be a neurological problem.

Good luck!

Karen x

3

Hi Snorkle,

I honestly think you should treat the list mainly as an aide memoire for YOU, and not as something you’re simply going to hand over to the doctor.

So the main person it needs to make sense to is YOU: use it as a reminder of all the things you’re meant to talk about. If any of it doesn’t make sense to your doctor, he or she should ask for clarification or elaboration at the time. That’s the whole point of you being there in person - you can explain if there’s a misunderstanding - otherwise you might as well just shove it in the post.

Ideally, the list should just help you to talk about your symptoms, not serve instead of talking. If you do want the doc to have a copy, it might be better to hand it over at the end, after you’ve already gone through it with him or her. Then they’ll have a reminder of the topics you covered.

But definitely don’t just hand it over, and say: “It’s all in there!” You risk it’ll get shoved in the file and forgotten about. The doctor will have much better recall if you talk through each item in your own words, allowing him or her to ask questions.

Tina

4

May not be necessary in this case, but if seeing a doctor about a number of symptoms it is sometimes advisable to book a double length appointment slot so there is time to do it properly.

5

Think I’m too late to comment but please let us know how you got on at the appointment x

6

Hope your appointment went well

xx

7

Thanks for all the replies and comments folks. I’m hiding this from everyone and only confiding in you lovely lot

Well, not really sure about how the appointment went to be honest.

My MRI results had only just been sent to him that morning and he hadn’t seen them so had to go hunting through the system to find them. Neuro dept said they had sent it last Tuesday grrr…

I didn’t ask for a copy of the letter - was feeling miserable at the time so didn’t bother asking for a copy, now I am thinking maybe I should have asked as it would have helped me tell you folks what was on it. Doc read it out to me fairly quickly - doh! I should have asked for a copy!!! The gist of it was that the MRI showed several white blob things (I think the neuro used the correct term for these…well I hope he did!) and some lesions or plaques but that it was all within expected levels for my age (36) and that the results were ‘encouraging’ and that I was being sent for nerve conductivity tests.

Doc then explained to me that that effectively means that I definitely don’t have MS or a brain tumour or vascular disease. He then went on to say he was pretty sure if not certain that I had a functional issue and that I should not expect to find out what the problem is because it was just ‘functional’ like a software problem instead of a hardware one.

So off I went thinking yay…I don’t have anything badly wrong then and that it is ‘sort of in my mind’ as my doc said and that I should pull myself together (that last bit is my words not his). Then I thought that if I do have symptoms from now on that I should just work through it, ignore it and carry on because it isn’t anything serious. About two hours later I had some pretty nasty pains down my left arm and lost the feeling in my thumb and first two fingers on both hands and I thought ‘how the heck do I just ignore this and carry on’ but I guess that is what it looks like I’m going to have to do - especially if my conductivity tests come through fine.

I’m not going to see my neuro for a while now I think - until my conductivity test results are through and I haven’t even had the appointment yet.

I should feel happy but I don’t. It looks like I’m heading for the functional file where it appears you just get dumped and have to get on with it. Is that right? Thing is, this pain is really beginning to affect me and my legs definitely aren’t right. Painkillers don’t make it any better.

So I guess I should feel positive in that I have further tests to go through yet but for some reason I don’t feel positive at all - far from it.

Moan over…off to boil head now…ARRGGHHHHHH!

8

I absolutely HATE this “appropriate for age” thing. It is NOT normal for a 36 year old to have lesions. And while they may not have been caused by MS, they have been caused by something.

There is a rule of thumb that is sometimes used (by some people) in radiology that one lesion per decade is “OK”. When you consider that you only need 2 lesions to be diagnosed with MS and that the majority of old age pensioners have NO lesions, it is not on (in my opinion) to write off 3 or 4 lesions as “age-related” in a young patient with neurological symptoms unless you are 1000% confident that they are unrelated / couldn’t cause symptoms.

If you get a copy of the letter, I will interpret it for you. I would also be interested in just how much your GP was ad-libbing versus the neuro’s letter. (For example, why is your neuro sending you for nerve conduction tests if he’s already decided that you have a functional disorder?)

Have you been offered any neuropathic painkillers for your symptoms btw? Amitriptyline is often used for both neuropathic and functional pain so I can’t see any reason why your GP wouldn’t prescribe them for you to try. So there is no need to try and ignore it and carry on without any help - please ask!

It may well be that there is a perfectly valid explanation for your lesions in the letter and that it is a software problem causing your symptoms, but I would think that it is too early to write everything off as functional: at the very least you need an explanation for those lesions first.

Karen x

9

Hello Snorkle. My heart goes out to you.

It is awful when stuff goes on and no one seems to know why. I have been in limbo now for 3 years this comming November…I am now being told I am a medical mystery…Oh Yeah!!..

The last GP I saw asked me if anyone had mentioned MS…I got really excited…as you do when you think someone is actually sitting up. I said yes the opthomologist, but she said she cannot give the dx because she is not a neuro…she strongly advised me to go private and see an MS neuro but im affraid i cannot afford it. My regular GP also voiced it untill the Neuro got hold of him and now he just reads off the notes she has sent him and says it is all way over his head and in the hands of the expert. And the expert keeps saying …your a medical mystery.

I dont want to have anything wrong with me but you get fed up of dragging yourself around as though you are a ton weight with a wild imagination…

.I am pretty much at crawling point for the most part nowerdays. I cannot go far or wide. however I still work full time because I can make it from A to B. In fact I dont really chat about it much anymore appart from in my 1-1 at work …in all fairness they are being good as gold at the moment…Fingers crossed…

.And, the same as I dont want anything wrong with me I also dont really want to go off work…I have grerat plans for my travells in the future and want to keep earning the money to fulfill my dreams ( Well, hope is always a good thing to have hey)

So hang on in there, try and keep your chin up and dont let it all get to you…(say’s me) haha.

Take care and keep us all updated.

xx Maria.

10

Hey there Rizzo!

Surprisingly I have been copied into the report, unsurprisingly the postie delivered it to the wrong address and I have only just had it handed to me by my neighbour.

I’ve had a read through and from what I can read it says I DON"T have lesions - I’m sure the GP read out that I had lesions, I even asked him “did you say it says I have LESIONS” and he said “yes, but nothing abnormal for your age”.

Anyhoo here it is…

“The MRI scan of the head and cervical spine has been undertaken and has shown some degree of small white matter change but in the absence of any other clear cut pathology such as ventricular system, dilation or space occupying lesion. Mild degenerative changes were noted in the spine. There is no clear cut spinal stenosis. On balance therefore this is a very reassuring scan and would be considered normal for her age. As a result of this I shall make forward referral for nerve conduction studies…”

So that is OK isn’t it?

I will go and ask for some amytriptyline - felt rough as anything earlier today and was in a fair bit of pain last evening and last night.

11

If I were you, the only bits of the report that I would want to know more about is “some degree of small white matter change” and just what the degree of spinal degeneration is versus what proportion of 36yo’s have it (“no clear cut” means that it’s debatable / borderline surely?).

White matter is the stuff in the brain that links together the gray matter (which is where all the processing, storage, encoding, etc is actually done by the brain). It’s a bit like cables linking phones: you need both to make anything work, but the cables just transmit, they don’t add any information. There are a number of different conditions that target white matter so it is important to make sure that the changes in your white matter really are normal and not early signs of one of these conditions.

I have absolutely no idea where your GP got the functional diagnosis stuff from. This report gives no indication that the neuro is thinking along those lines. Very strange behaviour indeed, unless perhaps he thought it would be reassuring?

I’d keep an open mind if I were you.

Karen x