GP - time to be straight and logical

New diagnosis and before diagnosis
1

Am going to my GP tomorrow to ask for her to consider my list and assess me logically. I have ordered a book ‘Overcoming Functional Neurological Disorder’; asked questions on a FND support group; thoroughly read the neurosymptoms site; read neurologists papers and am only even more convinced I am not suffering a functional illness. It just doesn’t add up. I’d actually like it to be true but my gut says not.

Here’s my (long) list I want the GP to go through. Not sure how it will look as I’ve cut and pasted and can’t formate it in the best way but it you’ve the patience please have a glance and see what you think. My GP has known me for 22 years through thick and thin, good and bad. She’s also about to retire so I have to get in quick!

Symptoms

· Buzzing in both feet and legs – constant since 8th March

· Buzzing higher up body (pelvic area particularly) – becoming more regular

· Sharp, prickly pins & needles – regularly since March, on top of the buzzing

· Burning feeling in both feet and lower legs – regularly since January

· Myoclonic jerks – several every day, particularly in bed/at rest; all limbs and neck can be involved but not all each time; leg jerks can be violent

· Tight, achy leg, arm and hand muscles – constant, becoming painful

· Strange tight feeling in small left toe and mid right toes – new

· Visible muscle twitches, mainly legs but sometimes arms – since November

· Waxy feeling of skin both hands, left side of head – since November

· Electrical pinging sound through head – scary but only happens occasionally

· Subtle burning pain mid-spinal area between shoulder blades

· Sharp pain in ribs – left side, occasional

· Sensation of tourniquet top of left arm affecting sensation in the arm lower down

· Totally numb patch on right breast – always for over a year

· Unable to feel cold in tips of index and middle fingers on right hand – constant since January

Previously

· Left knee buckles – since November, commonly when most ill; otherwise when overtired

· Sensation of warm water running down back of right leg

· Whooshing, roaring sound pulsating in left ear triggered by rumbling noises such as lorries, xbox games, weir water (from June-November 2011) still threatens occasionally

· Line of pain behind left ear and into temple

· Immense fatigue

Reasons against FND

· Symptoms came on and went away gradually not suddenly

· Symptoms are not one sided

· Buzzing is continuous, not fleeting

· Have never had a seizure – non-epileptic or otherwise

· No dissociative episodes (which are the most common functional symptom)

· Jerks are second or two – not prolonged

· Jerks are spontaneous and not triggered by noise etc – was the Bereitshaftpotential wave present in my EEG??

· I don’t drag my foot behind me or have an altered gait

· There was no ‘trigger’ for the illness

· No sleep problems (which are very common in FND)

· No anxiety or panic attacks (also very common in FND)

· No fixed posture (functional dystonia, common in FND)

· The pain in my back (if this is related to symptoms)

· Ping through head

· Surely it would have happened years before now when I was actually under real stress?

· Comment from optician some years ago re “pale nerve endings” then asking “do you get any numbness or pins and needles?”

Reasons supporting FND

· Clear MRI scans

· Reflexes are normal

· Normal EP

· Functional weakness on exam

2

I don’t know very much about FND, but I know a bit about the brain and that, when it wants to, it can cause literally anything. What’s more, an awful lot of the brain is not under conscious control (in fact, there is a rather good argument that none of it is!). So, although you have all these, no doubt debilitating, symptoms, the fact that your clinical exam, MRI and EPs are normal strongly suggests that there is nothing organic wrong with your nervous system. Of course, this kind of conclusion is based on current levels of understanding about neurology - and that’s good, but far from brilliant! Maybe we’ll know better in the future, but for now, the neuro’s hands are tied :frowning:

One thing: have you had a spinal MRI? (Sorry, can’t remember.) If your GP is supportive and you haven’t, then perhaps she would refer you for a high resolution spinal scan? (She needs to ask for saggital and axial scans with a maximum of 3mm slices.)

Good luck.

Karen x

3

I’ll jot that down , thanks Karen. Just a little more if you don’t mind…

Do you think it’s irrelevant that I can barely feel pinprick in my lower legs; can’t touch my nose with eyes closed in finger to nose (I touch the right eye instead each and every time); can’t do the finger to his finger then to my nose when he moves his finger about (I undershoot and get confused so forget to go to my nose or something); I can’t do heel to toe walking without stumbling; I can’t hop at all; my toes barely move at all in babinski - big toes are stock still, little toes bend really slightly and also spread- is this still downturning?

Sorry so many questions but I was so ill in my first attack and fairly ill in my other two that I want to be sure of what’s going on. If this is indeed functional then I still need to understand it in order to accept it.

Thanks!

4

Hi Deb

Did you see this link that mrbobowen pasted onto one of his replies regarding functional symptoms, and how neuro’s approach them?

http://jnnp.bmj.com/content/76/suppl_1/i2.longIt

It makes interesting reading!

It must be incredibly hard for you to deal with, not knowing what the f*** is going on, but I suppose without any hard evidence (positive scans/lp’s etc) it must also be hard for a nuero to diagnose anything, and maybe they are also stumped.

I think the problem with the ‘functional’ label is that it seems so wrong if you are experiencing real symptoms, and the suggestion to the patient that it’s all in the mind, or being actively made up! I think its something to do with a kind of neuro linguistic programming which actually makes the symptoms real, they do exist, you (or whomever) are not imagining them, your body/brain has re-programmed itself to feel them for real for some bizarre reason. Its why the lightning process (M.E therapy) or CBT works for some people, it re-programmes the brain to react differently, properly, to whats happening, conciously or subconciously. I think!

I’m not suggesting yours is functional, and I’d certainly be pursuing some further info and advice from your GP, there’s new stories on here every week about someone who’s been mis-diagnosed/waited years for diagnosis/even had positive diagnosis overturned, and some then reinstated, so it seems to be the minority that get an early, straightforward definate diagnosis.

Good luck Debs, hope you get some resolution soon xx

5

Thanks hunni - I’ve just read that article through, there are some utterly bizarre symptoms in functional- I said that to the neurologist and he said “you’re symptoms are bizarre in the ordinary world!” Hmm I had to agree but cheeky b*gger. I’ve read very similar articles and I can see the neurologists approach/attitude/point of view etc. I’m not arguing that this is MS cos the tests are negative but there’s something going on no one can put their finger on yet I’m sure of it.

I think it’s only fair to question when you’re left feeling so ill with such strange things happening. I can cope on weeks like this when it’s just a bunch of weird symptoms and I can go about a normal(ish) life but not when I’m ill with it and have immense fatigue. I’ll ask for repeat scans as they were done very early on without contrast and it only needs one lesion to cause a minefield of symptoms doesn’t it?

Or maybe I’ll just go away, tail between legs and accept my brain is f*ked for no known reason!

6

Hi was the actual diagnosis made by the neurologist or did you have to return home and read up about the symptoms on the neurosymptoms website?

The reason I ask this is I had to confirm with my neurologist if indeed he had made the correct diagnosis, I did not agree with his diagnosis and did not get back to him.

Unfortunately the diagnosis ended up on my medical records which I had removed.

If it was diagnosed by the neurologist at your appointment the only thing that you have against you is the normal tests, this does not mean you are making up your symptoms. I would have the additional tests mentioned already by the posters maybe the results will show up something is actually going on which you can then use in your favour and push for answers.

7

Hi - thanks for replying fjear - the neurologist showed me the website whilst we were there and said “this is what I think you have, go home, take a look and see what you think” he also wants me to go for CBT so, as much as it is helpful in everyday life for anyone, I’m presuming they’ll not find anything in my way of thinking/acting to hook this onto. It’s honestly baffling me completely, I can’t relate to it at all. To be fair to him he did say “I do hear you, I know this is hard and you want answers” he also referred me to a friend for a second opinion - the second one barely looked at me, certainly didn’t take time to know symptoms, how it came about etc, just looked in my eyes, asked me to stand on my toes, pinpricked me (which I couldn’t feel properly in the lower half of my legs), did reflexes and said he found no reason to disagree with Dr X. That might be a diagnosis, I’m not sure. I’m not discharged yet anyway.

fjear - are you diagnosed? Do you know anything about those tests I asked about above which are ignored? Why do they do them if failing them doesn’t matter?

I’ve more questions now than ever!

8

“This is what I think you have” is a good enough reason to dispute the diagnosis. He was not competent enough to make the diagnosis

I am currently undiagnosed and don’t care about a diagnosis because I am finally going to receive treatment for my various symptoms. I am also on an extesive amount of medication which helps with the symptoms unless they flare up.

I would recommend having a Visual Evoked Potentials test which is a painless test, they will attach three wires to your scalp sit you in front of a TV with what looks like a chess board. They will run alternate flashing tests which will stimulate some of your nerves and the response will be recorded. They usually do the test a few times on both eyes. If you have an abnormal result it means something is going on and not necessarily ms.

The other test I would recommend is NCS studies which some people find painful. They attach wires to your limbs and stimulate the nerves in the limbs to see how long it takes to obtain a response. If you are brave enough you can also ask them to perform the test using needles. Again if this test is abnormal then something definitely is going on.

I have always been against the idea of having a lumbar puncture but I was talked in to one by a neuro and despite having matching oligo bands in both the CSF and Serum I was dismissed with a diagnosis of multiple neurological symptoms no cause identified. If any of the tests above are normal and you are confident of having a lumbar puncture then that choice is yours. I would not recommend it at all.

Regardless of whether the tests are normal or abnormal and you can’t get any answers from neurologists, then I think it would be worth asking for a referral to a rheumatologist to rule out any systemic causes.

If you are clear from rheumatology and you have some abnormal tests then a second opinion is worth asking for.

I hope the above information is helpful if you need any clarification, just private message me I’ll be more than happy to elaborate as much as I can. If you message me I’ll be notified by email, where as if you just reply to this post I wont know until I visit the forum again

I am not a medical professional just learnt about stuff over the past couple of months. There are people on here who will be able to give you a better and thorough explanation than me. rizzo aka Karen usually has some great threads and is very helpful if she has the time I’m sure you will provide you with a better explanation.

Hope the above was helpful

9

Hi Deb

I would certainly go back to your GP and question. It’s horrible not being believed - I’m not saying functional disorders can’t cause strange symptoms. I know as I’ve certainly seen quiet a few patients with functional disorders and anxiety. Personally I think if you take the time to get to know your patient and understand whats happening with them and their life and the type of person they are you will have an idea as to whether they are that type of person. I think too many doctors give us too little time and when scans or bloods come back negative its the only answer they have. They forget that there are some MS patients that have negative MRI’s or some patients that can initially have ‘essentially’ normal MRI’s but go on to develop lesions.

I really hope you get somewhere with this.

Good luck

Reemz

X

10

hey…really hope you get the answers you seek…yes go back to gp. I don’t know much about FND either but it is common sense that is should not be dx until all other avenues have been pursued…and if your neuro just asked you to look at the website that does not equate to a dx!! I would go and see the CBT person and they are the experts and if they feel you do not need to see them then they can refer you back to your neuro and write to your gp. At least then you will know you were sent down the wrong road! Then it’s the neuros responsibity to do their job and find out what’s gong on and if that means more test so be it…it’s good you are still under his care. let us know how you get on. em

11

[quote=“debc”]

I’ll jot that down , thanks Karen. Just a little more if you don’t mind…

Do you think it’s irrelevant that I can barely feel pinprick in my lower legs; can’t touch my nose with eyes closed in finger to nose (I touch the right eye instead each and every time); can’t do the finger to his finger then to my nose when he moves his finger about (I undershoot and get confused so forget to go to my nose or something); I can’t do heel to toe walking without stumbling; I can’t hop at all; my toes barely move at all in babinski - big toes are stock still, little toes bend really slightly and also spread- is this still downturning?

Sorry so many questions but I was so ill in my first attack and fairly ill in my other two that I want to be sure of what’s going on. If this is indeed functional then I still need to understand it in order to accept it.

Thanks!

[/quote] Been on a train most of the day (visiting family in Scotland :-)) so sorry I didn’t see this earlier. Tbh, I can’t really tell you much. What I know of this kind of thing is from books so it’s far from perfect and completely lacking hands on experience). An abnormal plantar reflex is either a lack of response or when the sole of the foot is pushed towards the sharp object (which usually means the toes curling away = Babinski’s). So I’m not sure where yours fits. The rest of it does sound like it needs properly investigated, and I think this means a spinal scan - I think everything you mention could be caused by a spinal problem. So, if I were you, this is what I would be pushing for. If that is clear, then it could be something that doesn’t show up on MRI - there are plenty of things like this - if your neuro has considered them and ruled them out, then perhaps rheumy?? Sorry I can’t help more/better. Kx

12

Hi all - my GP is fab! Shame she’s retiring. She went through everything with me, has prescribed gabapentin and suggested I put my name down for neurological research at the London Neurology and rehab Institute (or wherever, yet to look it up) . First she wants to get the symptoms under control.

She said it may yet prove to be MS but my symptoms are quite diverse to be a usual presentation. It may even be viral since I had a month or two with minimal white blood count and platelets back in March 2011. She said “you don’t fit in any box and the neurologists just don’t know yet so, knowing you, research may be a good way forward.” I’m quite excited at that prospect! When my son was incredibly ill with food allergies I researched allergy and wrote a book for other parents in the same boat - my GP wrote a page from a GP’s perspective for it too - so she knows I like this approach.

I’m off to look up research programmes!

13

Brilliant news Deb. Enjoy your research, and hope you get some answers soon. There’s still so much nobody knows about, you never know, you could be the one to make a breakthrough! Good luck xx

14

This is awesome news Deb. Fantastic you have your GP on side and supporting you.

I’m so pleased.

Reemz

X