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Can you just say to your GP 'Test me for MS'?

(23 Posts)
TabbyM Wed 03-Apr-13 15:24:32

I would ask for a neurology referral - you usually need 2 "episodes" to be diagnosed and a MRI scan. My symptoms were just pins and needles continuosly in one leg for a fortnight then nothing for 2 years before the same again however I've met people with all sorts of symptoms from temporary blindness to blackouts.

magso Thu 21-Mar-13 23:39:39

2boldlygo I had not heard the health trauma theory of CFS but it is exactly what started mine! Interesting. PoTs is postural othostatic tachycardia syndrome which is just when the control mechanisms that maintain blood pressure in all positions are faulty, so am not much use when upright. Inconvenient! it is often part of CFS. I blame it for my forgetfulness.
Loosing weight sounds worrying, although it is easy to overlook hunger when in pain. Hope your GP is able to help.

2BodlyGo Thu 21-Mar-13 21:36:04

oh, and one more thing, I have lost a LOT of weight. It is largely I suspect as my appetite has plummeted. I eat much less and skip meals as I forget to eat, don't feel hungry. When I do sit down to eat, or remember, I eat fine, it's not a problem with food, happy to eat a pile of donuts if they are around! But, I can't eat breakfast (never have really) and sometimes find I have gone all day without eating blush. I know when I took amitryptiline, my appetite disappeared completely and utterly, and only returned a bit when off it. I didn't think it noticed, but everyone i speak to comments on it. It's embarrassing as I'm already skinny!

I suspect that's probably a mix of everything, meds, pain, lack of exercise...

2BodlyGo Thu 21-Mar-13 21:32:08

And you are right that I have 'flare-ups' that seem to have a sort of pattern, in between those flare-ups I have some newer symptoms, and when I have a flare-up some of those symptoms increase, but it's hard to say how much so, as at the point of my flare-ups, that means epic back and sciatic pain, which in turn has me reaching for the highest level pain meds, and that all had it's own side effects which may mask/mislead any of the other things I experience, so I may well put dizziness and high level fatigue at that point as due to diazepam etc (which, it probably is at that point!).

The flare-ups seem to be roughly equal in measure. And, when I am feeling 'well' the things that trigger my back to go don't seem to trigger it so much, and when I am feeling the flare-up start, a tiny thing can cause my back muscles to spasm and my sciatic nerve to start hurting really badly.

2BodlyGo Thu 21-Mar-13 21:28:29

Thank you everyone for posting, and so sorry that you are all experiencing such rotten health problems sad.

I have taken my health for granted for so long. I have always suffered from throat infections, viral infections etc, and had a couple a few years ago which floored me including a few months of post viral fatigue, but looking back, nothing compared to how I feel now. I feel like I am sort of slowing down, like my body is protesting at the level of pain I have experienced with my back problems for a while and it's shutting down.

saltire funnily, fibromyalgia is something a friend mentioned to me, and which has also cropped up through my Dr Google and conversations with people. I have looked at the symptoms and a lot of my pain doesn't seem to match the 'pain spot' locations, but I also know that not everyone gets pain in all of the trigger points (not sure of the name). And yes! to forgetting things that I say mid-sentence, it's so embarrasing, especially at work! I look so stupid blush as I either forget the word, or forget the entire conversation 'er, what was I saying?' I forget people's names sometimes now too, colleagues that I worked closely for 10 years! blush.

And worse than all that. I actually forgot how old I was a couple of days ago. I was pretty certain I was 34. DD had written my birthday on the calendar and my age '36'. I am not 35! I said indignantly. 'aren't you mummy?' 'no! I am going to be 35! you cheeky little thing!' and DH piped up 'your 35 already!' FGS not you as well! Then I questioned myself, and even thinking about it, I seriously could not remember if I was 34/35. DH had to do the maths for me. And I am 35 blush. Those things happen a lot these days. Could easily be sleep deprivation. I shall blame that.

weegie I am going to google that, not because I think I have it, but because I have never heard of it before! Is it easily treatable? are you able to control the symptoms? It must be horrid having something that is not widely known about as it must be harder to manage the symptoms easily.

magso what is PoTS? I have read that CFS and ME can sometimes be a body's immune response to health trauma of some kind, as a result of chronic inflammation, such as arthritis or chronic back pain. Is that something you have heard of? Sort of like the body being overdosed with inflammatory chemicals and it doing some damage I guess? I often wonder what damage the continued inflammatory chemicals do to the body, it can't do nothing as they are toxic!

I cannot bear the idea of giving up my job. I have worked hard to get where I am and am just embarking on a new phase of my work. It pays well, ok, so I am not rich, but manage fine. Luckily I have excellent support at work relating to my back condition which is regarded officially as a disability and they have accommodated my condition brilliantly. But, they won't be able to do that forever and especially if my what seem to be 'side effects of medication but may not be' continue as the standard of my work will deteriorate.

magso Wed 20-Mar-13 08:39:12

I agree the neurologist is best person to consult, however it might be worth discussing your symptoms with your GP in case it is worth seeing a rheumatologist (am going from my own experience) as you seem to be having a flare up and new symtoms. The GP might want to check for inflammatory markers and deficiencies in blood tests (ESR, ANA, CRP, -serumD, etc again I only know from my own longwinded experience). I have similar symtoms (yes including that one) with disabling heavy fatigue like the flu', and have CFS with PoTS and a dodgy back. Again not saying you have CFS - just that there are many conditions that give similar symptoms.

yellowhousewithareddoor Wed 20-Mar-13 07:52:28

I have cfs-ME and a lot of symptoms overlap. Sadly I had to give up work as I just could not stay awake or concentrate enough.

weegiemum Wed 20-Mar-13 07:52:03

It certainly sounds like you need to be seen, probably by a neurologist rather than neurosurgeon though.

I'm (sadly) very much into this now. I have the crushing fatigue, memory loss, tingling and numbness in my hands, lower legs and face, shooting pain in my feet (despite the numbness, though luckily I'm tolerating amytriptaline fairly well). I lose my balance a lot, especially if it's dark or I have a dark top over my head! Also if I can't actually see my hands and feet my brain can't find them - a good example is that I can't actually clap my hands with my eyes closed, I keep missing!

I've got a vanishingly rare neurological condition called CIDP, Chronic Inflammatory Demyelinating Polyradiculoneuropathy. It's a bit like ms, I had all the tests.

I think that's why you need to see a consultant ASAP. I got diagnosed after I fell down the stairs (I'd been hidin my symptoms from dh, who is a GP, as I hate hospital) but it took several weeks, nerve testing, lumbar puncture, CT and MRI scanning etc.

It could be ms but there are a huge amount of other weird neuro things you've never heard of (my dh has been a doc for 18 years and hadn't ever heard of my thing until I got it!!).

Saltire Wed 20-Mar-13 07:33:08

Some of the symptoms that you list I have,a nd I got diagnosed with Fibromyalgia about 9 years ago.
I get
widespread muscle pain
hellish fatigue
forgetting words,
stopping mid sentence as i forget what I am saying
eye problems - inclusing occasional blurriness and sensititvity to light
migraines
numbness.

now i don't get all of them all the time. I have the pain and fatigue pretty much 24/7, but the others vary depending on the level of flare up i am enduring.

not saying it is this BTW, just worth bearing in mind

2BodlyGo Tue 19-Mar-13 22:03:30

go thank you for posting. I have yet to see my neurosurgeon, I have been referred, onto a lengthy waiting list and am about 2/3 through the wait! I will give it a little while I think before talking to GP, as it seems it could well be medication related.

I don't get all of these symptoms at once, some I get more than others, but I get all them at some point. If that makes sense. Some for quite a while. and others more recently. I am notorious for Dr Google, just out of curiosity and to help me find ways of managing symptoms more than expectation of diagnosis, and MS keeps coming up. It seems to fit how I am presenting. but, as said, it's more likely medication.

TBH I am not panicking as I have felt unwell for such a long time I am not expecting to feel better any time soon even with my back problem, and I think I have already done my panicking and accepted some level if disability probably forever. If there is something going on that is not related to the meds, then sobeit, and I will deal with whatever that is, because right now, I feel like poop most of the time and am just thankful for a day when I don't feel walloped in some way.

GoAndAskDaddy Tue 19-Mar-13 14:34:54

I have MS & have to admit some of your symptoms sound typical in MS. However, I think it's unlikely you would get all of these things....

If you are still under your neurosurgeon I think you're better discussing it with him/her rather than GP. (My GP is lovely but clueless when it comes to MS.....I would never consult him about any MS-related symptoms but ask my MS nurse/consultant).

Good luck & try not to panic.
xx

2BodlyGo Mon 18-Mar-13 21:13:33

oh, there is one more symptom, which is probably side effect of meds <whispers> sex drive has disappeared completely blush

silverstaresatnight Mon 18-Mar-13 21:08:47

Good idea titrating down the meds
I'm not saying you can't ask about it, just that you have a likely other explanation and I would try to deal with that first maybe

2BodlyGo Mon 18-Mar-13 21:05:20

maybe i should do a pain diary to monitor my symptoms and see if they fit a pattern relating to certain times or when taking certain meds/or coming off them. I keep meaning to do this anyway, but I am so lazy, I forget to keep it up.

2BodlyGo Mon 18-Mar-13 21:02:10

mirry I think that's why I am worried, lost of little symptoms that can be explained away but all building up and not going away. I haven't spoken to my GP about all of these symptoms as on their own they seem quite irrelevant some of them I have, like the vision (not the bright lights and not about last week) as I thought it was to do with meds and I have spoken to her before about tiredness (you have two children and a job, you're gonna be tired! is what she said!) But, I just feel so unwell with it all. I am sorry to hear about your diagnosis.

2BodlyGo Mon 18-Mar-13 20:59:01

silver yes I have thought meds. But, I have had breaks in them (yes, tramadol, have tried gabapentin, amytriptiline and more recently pregabalin).

But, some of these symptoms I had before I started tramadol, when I had been using codiene, but more intermittent before the pain increased and codiene is not great long term is it? and I have been on tramadol modified release for 7-8 months with no break and these symptoms come and go.

I have more recently tried pregabalin and put the return of some of the symptoms down to that, as I suffered horrendously with amitryptiline side effects (worse was loss of appetite shock lost 1.5st in 5wks!) but I have stopped it now (about 2weeks). I did think that maybe some of the symptoms are due to stopping it though? it worked a treat for nerve pain, but it made me feel very negative and have panic attacks, my mood plummetted so I stopped it. Shame.

So, at the moment I am taking tramadol modified release 100mg and nothing else. I even stopped NSAIDs to give my stomach a break. I have titrated down from 200mg daily (am and pm) to 100mg daily and am trying to space it out a bit more. I would love to come off it completely then see how I feel but that's quite daunting, so not sure!

RE; vision, I forgot to say that when I had severe fatigue to the point of leaving work last week, I had vision problems - I couldn't focus on the computer screen, and when I went out for a walk I stopped for hot chocolate and sarnie and tried to read the paper and I couldn't read as I couldn't focus. It was that episode that triggered me thinking of MS not for the first time. It has happened a couple of times again, but nowhere near as severe as that day last week, which did frighten me a little as I couldn't explain why I felt like it.

It's probably all medication related, as you say.

mirry2 Mon 18-Mar-13 20:55:32

Tell your GP that you are worried that it could be MS. In my experience they will take your worries seriously and either explain why they don't think it is or suggest a referral. If the GP doesn't give a convincing explanation, insist on a referral. MS does produce lot of vague symtoms, some more unpleasant than others but you need to have your mind put at rest. (I have MS)

silverstaresatnight Mon 18-Mar-13 20:47:12

Sounds as if a lot of it could be explained by pain meds ( such as gabapentin or tramadol? ) and your back problems.
If you get visual disturbance or weakness in arms or legs or difficulty speaking it is more worrying.
Keep your eye on it and maybe try to reduce the meds / have them reviewed properly by the Dr in case they are interacting.
If you don't improve you can always ask for a neuro referral later on

2BodlyGo Mon 18-Mar-13 20:36:55

weeg I guess that is what I meant, start the process. silver oh it sounds so silly to write them down blush I will give it a try.

I have nerve pain, pins and needles in one leg, into foot that has been diagnosed as being as a result of sciatic nerve irritation/damage and this is being assessed further by a neurosurgeon to consider a partial lumbar disc removal. I have intermittent periods of back problems which start with a flu like feeling and within a few hours my back muscles spasm. This happens around every 4-8 weeks (more and more frequently). I can recognise the signs of what is about to happen by a feeling of flu pain (don't know how else to describe it) beforehand. Most people go hmm when I tell them about this.

I have increasing fatigue. And as it increases it is not just 'a bit tired'. An example is that last week, I struggled to keep awake at work. I got up to walk in the bitter wind and rain (by the sea, harsh!) to wake me up and as I walked I struggled to keep my eyes open. I have been very sleep deprived with a non-sleeping baby (now 3.5yrs) and even on 2 hours sleep never walked with my eyes closed due to tiredness! I had to leave work early as it was so bad. It's started increasing at a rate of knots. I had put it down to pain meds side effects.

I have muscle pain and tightness which is not going away and not caused by anything obvious, it's in one leg and one arm in particular, feels like I have walked a long distance or run too far and the muscle is sore and tight in my leg. In my arm it feels like I have lifted something to heavy and pulled a muscle, the pain goes down into my wrist. I also have muscle and joint back around my back, but this has been ongoing and linked to my lumbar disc, however I wonder if this is all connected as lumbar disc problems are sometimes diagnosed as the cause of a problem when not actually a problem (even if present).

These symptoms feel connected, they seem to increase/decrease together, and come in waves or cycles almost every few weeks to a couple of months at the moment. Right now I can feel the flu symptoms returning, along with horrendous fatigue and muscle pain and know my back pain will increase any moment.

Along with this I have:
Increasing periods of dizziness/feeling faint. To the point of being in a supermarket or shop and having to hold onto something to stop me falling over. The world spins around me and my head feels pressured. I have not actually fainted and it goes away (often leaving a headache). I am having these up to 2-3 times a day, but then I will have some days when it doesn't happen. Not always/usually coinciding with standing too fast, or hunger.

hand tremors when trying to pick things up - have been blaming medication. Not a problem when I hold my hands out straight.

Eye problems - some minor problems with peripheral vision, had that checked and it seemed ok, was put down to being on amytripline for nerve pain and a side effect of that. Eased when I stopped it but not gone completely. I occasionally walk into things, but less so now. I had a period about 4 months ago when I walked into everything on just one side. Also had a weird experience a few months ago where my eyes became extremely sensitive to light and hurt very badly if I even opened the blinds. Going outside was painful and I had to cover my eyes to be able to walk. It was not a particularly sunny day and it actually disabled me for 24 hours. But then it passed and nothing since.

Constipation. Big problem. Blaming medication as it's a side effect of some of the meds so maybe that is the reason.

Speech/forgetting words - this happens more often, like a brain fart. But, again put this down to nerve blocking meds.

Stinking stinking headache which is quite hard to shift and not linked to over-tiredness, hunger etc.

I am sure there are more things. Like I said, probably a hypochondriac.

weegiemum Mon 18-Mar-13 20:13:55

A diagnosis of MS is usually made after a whole load of tests by a neurological consultant, some tests your GP might not access for a year or more! (I'm thinking emg nerve testing).

You can ask for a neurological referral though.

silverstaresatnight Mon 18-Mar-13 20:13:21

What symptoms do you have?

2BodlyGo Mon 18-Mar-13 20:10:48

But I also don't have many many of the 'usual' or more common symptoms of MS which makes me think it probably isn't and just get back in my box of self pity.

2BodlyGo Mon 18-Mar-13 20:09:57

and give some symptoms that cause concern? Or, is it that you have to wait, but present symptoms from time to time and hope/wait that they might make a connection with the symptoms presented over time and come to the conclusion themselves/if they don't it means you don't have it?

Am I just being overly dramatic? probably

I don't to go hugely into symptoms for fear of outing myself, but some things over the last few months keep pointing to it as a possible.

Some of the meds I have been put on are used for people with MS to manage some of the symptoms (the ones that are similar but have been attributed to another cause) and so DH said unusually for him, rather than 'don't be so stupid' that he had thought similar. He also said that he wondered if there was any point in a diagnosis if the meds I am on are managing things ok, does it matter what the official 'diagnosis' is? I agreed with him to an extent at first, as it didn't really matter, it probably wouldn't at that stage change the treatment much, but, some symptoms are 'breaking through' the meds and so now I wonder if I should talk to the GP or just wait and see if it all gets worse.

I don't want to go in there and the GP laugh and say ' you been talking to Dr Google?! don't be daft!' or be seen as a hypochondriac as I have also read all sorts about opinions relating to some medical conditions reported, if some symptoms seem non-organic and they are sometimes considered to be thought of as mental illness related etc.

If I listed the symptoms would I a) seem like a hypochondriac or b) be taken seriously as someone with a multitude of adding up symptoms that might be something more serious that it currently seems?

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