Advice please

Hello, sorry to intrude on your forum but I’m just hoping for some advice from you people who are the real experts. I started with symptoms a few years back but just thought I was getting old (almost 50) eventually visited the gp Who did the first lot of blood tests and then sent me to a neurologist. Had a mri on my brain without contrast which came back clear. When I saw the neurologist again for the result he was very dismissive of my symptoms and said its not neurological because of the clear scan. After reading up about the diagnostic process for Ms I’m left wondering if I should maybe push for a spine mri with contrast and a lumbar puncture. As the symptoms are progressing, they are looking more like possible ppms than anything else. Up to now I’ve had 3 lots of blood tests with nothing to show and a different brain scan to rule out other things. The main problem I have is with my legs, lots of pain in both. Terrible fatigue. Trouble walking. Blurry vision and a few other things. Do the neurologists normally totally rule out Ms after a clear scan or should I maybe ask for a second opinion? Any advice/comments would be very welcome Thanks.

My diagnosis of MS was based on a MRI and Lumbar Puncture. They originally diagnosed me RRMS but 8 months later that changed to PPMS. I dont really understand any of it as I am better now than when I was originally diagnosed. My worst symptom now is fatigue. After all my appointments since, I leave none the wiser. I wish these so called professionals would speak in plain English so I know where Im at. Although I`m PPMS my symptoms seem to be in reverse rather than progressing and no one has yet explained why.

MS is notoriously tough to diagnose as they need to apply the McDonald criteria to give a diagnosis. Yes an MRI with contrast might help if you have active lesions but if you’ve just had an MRI then you’re unlikely to get another unless there’s cause so a LP might be a better request. Please remember tho, it could be a load of other things.

Truthfully, I thought I had a trapped nerve and got an MS diagnosis after a spinal MRI combined with a physical exam (walking heel/toe and that thing where they scrape the sole of your foot etc.) by a Neuro. I had other health issues that were in fact MS related but this wasn’t for two years and other tests that they eventually agreed MS symptoms! I think that’s why MS is a toughie as it’s a snowflake disease, we all have our very own version.

Here’s the McDonald criteria

Sonia x

Thank you both for taking the time to reply. I realise how difficult it is to get a diagnosis and that it could be something else but the neuro only said Ms or parkinsons as possibilities. Parkinsons has been ruled out by a datscan and nothing else has been mentioned so I don’t know what will happen next. I got the impression he was going to discharge me at first but then decided to do more blood tests. What else can they test me for now because all the blood tests have been ok upto now. I’ll ask if I can have a lumbar puncture and push for a mri on my spine. It would be more helpful if the specialists were more informative about what else they’re looking for. Thanks again.

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Hi Anon,

So based on symptoms, your GP referred you to Neuro. You had blood tests & 1 MRI. None of the tests or scans show any sign of M.S. The Neuro has not discharged you.

If the above is right, then, it’s possible the Neuro will want to see you in 12 months for more blood tests and MRI (a contrast mri is when a dye is injected into your bloodstream which then shows any changes from the 1st MRI).

At present, although you have mild symptoms, there is no actual evidence of MS. A contrast will not be useful at this point as it doesn’t have anything to contrast against (because your 1st MRI was clear). So insisting on a Contrast mri would only expose you to more radiation of powerful Xrays but still come up with the same ‘clear’ result.

A lumbar puncture takes some fluid from the Central Nervous System (brain & spinal cord). This gives vital info to the Neuro.

However, because the Neuro mentioned it, MS has become prominent in your mind, resulting in understandable worry and stress. Then Dr Google is used to terrify you of all the what ifs, why, when & how.

Anon, could you ask yourself what you’d have done if the GP or Neuro had mentioned Lupus? Would you refer to Dr Google to research Lupus? How about Fibromyalgia, which gives many of the same symptoms of MS?

There are so many neurological and rheumatic conditions to mirror your current symptoms. Your Neuro could not begin to mention all possibilities so it’s possibly why he only mentioned Parkinson’s Disease & MS. I doubt The Neuro said it had to be one of the two he mentioned.

The worst thing to do (but impossible to avoid), is to add stress and worry to your symptoms. Stress alone is a huge factor in many neuro conditions.

Evoked Potential Tests is a sort of eye test but actually measures your concentration and attention levels, plus reaction times. It was this test plus others, that led DVLA to revoke my driving licence. So I use buses taxis, trains planes etc.

You seem to believe your Neuro has totally discounted m.s. Personally, I doubt this is the case. I’d expect the Neuro to keep your file to update every 12 months. You say you wish the specialists would tell you more, one of the reasons is to stop patients jumping onto the internet and self diagnosing a catastrophic condition. However, you can ask them anything & they have to reply.

If you believe you do have ms and the specialists have denied it then I’d ask them to confirm in no uncertain terms, that you definitely do not have ms, and your current symptoms do not have any bearing on ms.

Meanwhile, Anon, try to concentrate on the good things in your life just keep in touch with your GP for follow up information.

My words are not intended to be dismissive of your plight, but to try and reassure you that there’s many things your symptoms indicate, and for now you’ve received excellent news that there’s no signs of M.S

Take care, Chrissie

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Hi Chrissie, thank you for your comments. I’m finding that I’m learning more from the people on this forum than I am from the specialist. I admit that the symptoms started off mild and not troublesome. However as this thing progresses it is affecting me more seriously. The noticeable problems began around 3 years ago with foot pain and pins and needles. Then came the burning and numbness in my right leg, after a while I couldn’t stand up for too long. Then came the fatigue which didn’t creep up slowly, all of a sudden it was overwhelming. I atarted getting numbness and tingling on the left side of my face and my lips started to feel constantly wet. I just about lost my sense of smell and developed an intolerance to heat. My gp did the first lot of blood tests for vitamin deffinciony and other things. That came back clear so he sent me to the neuro. He examined me briefly and said possibly Ms or parkinsonism. They took more blood for more indepth tests and arranged the first scans. I saw him 13 months later for the results. He said that the leg pain could be anything and that we all get tired and the least likely reason for the fatigue would be neurological. He arranged for a ct scan on chest and abdomen and took more blood. At present I’m waiting for a follow-up appointment but as the last one took over a year I don’t think it will be soon. The leg pain is getting worse and keeping me awake at night and I’m having to finish work early most days because of fatigue. My legs are also getting a lot weaker and I struggle to get out of chairs etc. Up to now I have received no medication for any of these symptoms and don’t know where this is all going to lead. I’ll go and have a chat with my gp again as you suggested and see what he says. Thanks again.

Hi again, hope everyone is doing OK. I’m going to see my gp today and I’m not sure how to handle it. I think I need to change to a different neuro because I’m having to wait over a year for each appointment instead of the 4 months it’s supposed to be. Also I would like to ask for a lumbar puncture and spine mri to rule out the possibility of ppms. Does anybody know if the gp can refer me to a different neuro whilst I’m waiting to see the first one? Or can a gp arrange for further tests without going through another neuro? The symptoms are getting progressively worse and I don’t think I should be waiting all this time. Thanks.

Hello Anon.

I had several trips to the doctor before finally getting to see a neurologist.

I had the full range of tests before diagnosis.

It’s difficult.

A thing I’ve found with consultants:

High levels of education and specialism are not a sign of good communication skills.

Flexibility of thinking and lateral thinking are not always part of people’s make up.

Sorry that’s not much help but such is my experience with work and with the medical profession, I’m always considering the whole picture.

Best wishes, Steve

Hi Steve, my doctor was pretty good when this all started. Had blood tests done straight away and when they were clear he referred me to the neuro. It’s the neuro that I’m not happy with because of the long wait to see him and the way he tried to explain away all the separate symptoms and not loo at them collectively. Yes people can get fatigue for various reasons and yes people can get leg pain etc etc. But how many people get all these problems at the same time! He seems to be using one normal brain mri which was done over a year ago to rule out everything neurological. Very frustrating. Best wishes and thanks for the reply Steve.

Just a quick update, told my gp what was going on (or not) with the neuro and he’s sent him an email to try to hurry things up a bit. If I don’t hear anything by July he’s going to refer me to Leeds or York to see ams specialist. Feel a bit happier about things now. Also the catscan and blood tests were clear. Hope you are all doing OK.

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