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Waste of time :(

New diagnosis and before diagnosis
#1

I had a neurologist appointment today with adifferent neurologist, it was an utter waste of time.

He didn’t look t the list of symptoms.

Threw my urine sample in the bin.

Looked bck at my file and sid you’ve had some of these symptoms for a number of years so you’re clearly able to cope with them.

Didn’t want to do any investigation and suggested that I might have fibromyalgia as I have reasonably normal reflexes but lots of symptoms however he suggested I up my amytriptaline to 70mg a day, when I asked what for he said it will help with the nerve pain. So there’s nothing wrong with my nerves but he recommends that I take meds perscripted for nerve pain!

It was an utter waste of time.

On the plus side I ended up having a long conversation with my mother (who I’m not close too) regarding her MS and my symptoms mirror hers exactly and it took her 15 years to be diagnosed (this was when the lesions finally showed on her scans).

So I feel little bit better about my symptoms but the neurologist was a wste of time! :frowning:

Where do you ll suggest I go from here?

#2

me too, how the hell can the d x us with little or no tests.this people want shaking until they do listen to us

#3

“reasonably normal reflexes” can also be written as “somewhat abnormal reflexes”. Hmm.

If I were you, I would be very interested to find out what my GP had written in the referral letter. I think this can often make a neuro decide what’s wrong before a patient walks through the door.

“Lots of symptoms” is also sometimes a push towards a non-MS diagnosis too. People with MS might have lots of symptoms, but they tend to have been built up over many years. They also tend to have quite a clear pattern. If a neuro hears (or is told by the GP) of a long list of symptoms without any pattern or clustering that points towards particular nerves, they are almost certainly going to move away from MS.

Is the neuro referring you to rheumatology about the possible fibro? Remember that fibro is a real diagnosis, and he might be right! Fibro causes extensive pain, which amitriptyline is often used to treat. If the neuro isn’t referring you, your GP should - the fibro diagnosis should be properly investigated.

Karen x

PS It may have been rude of him to throw it in the bin, but neuro don’t normally need urine samples.

#4

Just to make it even more interesting, I was diagnosed with ME at 18 and was signed off by the rheumatoidologist and first referred to a neurologist 5 years ago and as the rheumatoidologist told me that my symptoms were neurological!

My symptoms have built up over a number of years and have been documented by the GP (who told me recently that he believes I have MS and referred bme back to see a different neurologist).

The previous neurologist I saw confirmed that the symptoms were neuroloical but since the MRI or my brain and C spine were clear of lesions and I didn’t want a lumber puncture he couldn’t confirm that I had MS at that point, I was told that it can take a number of years for lesions to show and that based on my symptoms he wasn’t prepared to confirm I didn’t have MS either.

As you will see from above my current neurologist says probably fibro, however I already know that I don’t have the all the pain point area’s needed for a fibro diagnosis.

I feel very frustrated that I keep being pushed from pillar to post and am actually receiving no help or support from anywhere within the NHS.

#5

I’ve already had an ME diagnosis Kel (never seen a immunologist though, I was diagnosed my both my GP and a rheumatoidologist).

These symptoms are different from those I experience/experienced with ME.

I do not care one bit what I actually have wrong with me, I just want some treatment to help improve my pain levels and quality of life.

#6

That’s dreadful Lidy your poor husband, I would go back to your Gp and complain and ask to be referred to a different neurologist