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frustrated it takes so long

hi everyone,

I don’t know i this is the right place to put this but here it goes.

for the longest time , maybe beginning 4 years ago ive been having pains in my legs and arm. over the last 12 months ive been getting more symptoms , weak and painful hands, bluring in my right eye , stabbing electric shock pains in 3 plaves in my head and the leg pains have gotten so bad that i find it hard to walk most days.

ive been going to see my doctor over the last year and he just pumped me full of pregabalin medication and yeah it helped a bit to ease the pains but it only masked what was really going on.

i made the effort to sit with my doctor and said how everything combined was starting to really worry me and that i had met a lovely woman who had been diagnosed with MS and would that be something to look into.

he said no and that it couldnt be MS and that im worrying for nothing, thats when i decided this guy is a quack and i changed to another surgery… my new doctor straight away said he wanted to get me to see a neurologist and to explore if or not it could be MS , i never even had to mention MS.

but here we are now and its been a few weeks and im waiting for an appointment from the hospital. i called them today to chase it up but they said call again next week ad see if an appointment has been made available.

ive read on these boards how it can take a very long time to come back to getting any sort of prognosis and i am just wound up over it all. as i mentioned it gets so hard to walk, i am in bed typing this now as ive just burnt myself out today and feel completely deflated and drained from just doing house work.

how did you all deal with this limbo that you all must have went through?

sorry for the rant , i just needed to vent

Insist on a MRI scan and Lumbar Puncture and stop wasting time.

hi scudger,

my doctor put in for an appointment with a neurologist but its not came through as yet. do you suggest i say my concerns when i get to the appointment and request MRI scan and Lumbar Puncture ?

thank you for your reply

Hi I am also in limbo personally I wouldn’t go into a neurologist insisting on any sort of tests or telling the neuro you think you ms etc you will likely annoy them or they will think your a hypochondriac just explain your symptoms and the neuro will do an examination if the neuro does suggest an mri you can then ask what happens if they mri is normal will any further testing be required. You will usually be able to tell from the neuro if you think there are taking your concerns seriously. And remember it can take many months

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I put my concerns to the Neurologist and took control of my situation without offending anyone otherwise I could probably still be waiting for things to happen now. By doing what I done I have my diagnosis and can deal with it.

I made first contact all the time otherwise you are forever waiting.

Life`s too short to wait around for other people.

I agree with cmcg. Suggesting that you might have MS (or anything else for that matter) and insisting on certain tests, to a GP or a neuro isn’t necessarily going to get you anywhere. You were probably right to swap GPs as your new one has referred you to a neurologist. But don’t forget that a GP cannot diagnose MS. Only a neurologist can and only then after a number of tests are done.

Keep in your mind as well, that while you may have some symptoms which appear to be like the MS your friend has, there are many symptoms of MS which are shared with other diagnoses. So when you see the neurologist, you can ask what s/he thinks might be the cause, but don’t expect an unequivocal answer. And I would not mention MS, unless it’s to say that your GP has suggested that it’s possible.

Depending on your explanation of what’s happened to you over the last few years, plus a physical examination, the neuro may send you for tests. These could include an MRI and Lumbar Puncture and even a Visual Evoked Potential. Also a nerve conduction test could be ordered. Equally, he or she may not send you for these tests, they may think all the signs are normal and discharge you, or arrange for a further appointment to see what happens in the meantime, or send you for altogether different tests.

It’s worth writing yourself some notes about your various symptoms over the years that you feel may be connected. Write down when symptoms happened, how long things lasted, whether they went entirely or if they are still with you. Include any drugs you’ve been given. This will help to give a clear picture to the neuro. Taking someone with you to the neurology appointment is also a good idea to help you remember what is said.

Most important will be to ask questions at the end about what happens next. Rough timescales for tests, how long till you have another appointment with the neuro for example. Also if there’s anything said that you don’t understand, ask for an explanation.

Sue

hiya

its all down to luck!

luck in finding the right person (that may be a neuro, gp, physio, ot…) and you both working together to get you though this

it took me 12 years but well worth it instead of dealing with superficial tickboxers!

good luck!

ellie

Yes it is a nightmare being in limbo. But you do learn to be patient. My journey has gone on for years but nose dived last March. I was referred to a neurologist who turned out to be a specialist in strokes but knew nothing about ms, so he asked my GP to refer me to a NEUROLOGIST :slight_smile: But wasted 6 months. I have an appointment with a neurologist in London who specialises in ms but found out there is one much closer to where I live. My great GP agreed to ask for a referral to him BUT 3 weeks later I had not heard anything so visited my GP. It turned out the letter of referral had been faxed not posted. I 'phoned the hospital and the fax never got there or got lost. I will now go to see my GP next week and ask if I can post it myself. Another 3 weeks wasted.

You really do have to keep chasing everything up, or you would be waiting forever.

Marjie xx

thank you all so very much for your replies. its very easy to feel very alone right now but having people here that know exactly what this feels like is reassuring.

ill call the neurology dept again on monday and chase it up and when i get my appointment ill say to the neurologist that my gp and i discussed the possibility of MS.

Hi, my limbo came and went and is kind of still with me!

20 years ago I began stumbling, having toilet accidents and feeling thoroughly tired all the time.

I was wrongly diagnosed with PPMS for 10 years.That was changed to HSP…hereditary spastic paraplegia…which isnt actually proven, but they ran out of ideas at the hozzy!

Hang in there chuck…I know how you feel!

pollsx

Hi Boudica wow that’s a long limbo! Could I ask, how did they come to diagnose PPMS and then decide it wasn’t that?

(I’m at MRI next week/maybe not MS but not ruled out by neuro yet/3 years down the line limbo!)

Thanks!

Another in limbo here so just sending sympathies and best wishes! Hope you get the relevant appointments soon.

Hi again.

I presented clinically as typical PPMS

ie…mobility went from normal to nothing at all in a 2 year period

reflexes were of the babinski type

bladder and bowel didnt know whether they were coming or going

BUT none of the 4 MRIs, 2 LPs, 2 EMGs and gallons of blood tests hinted at MS.

Then after 11 years, a new neuro said I was too well for MS!!!

I had a slight eye twitch but no sight problems.

So he clamped on to HSP cos there was nowt else left to blame. And even HSP hasnt been proven.

I honestly doubt I will ever know why I cant walk!

pollsx

Very mysterious! But also very frustrating for you? I’ll google HSP (lol - though clearly not a laughing matter!). I can’t imagine how having a 10 year old diagnosis turned around made you feel - looking for an answer, whatever that is, seems to be a common feeling here, and what I’m waiting for. Sorry you’ve had such a rough journey but I can see you’ve helped a lot on here (me included - have been reading long before posting). Thanks! X