Saw my Neuro today, and....

New diagnosis and before diagnosis
1

He was certain that it wasn’t MS, based solely on the radiologist’s report of my Brain/Cervical/Thoracic. No lesions found.

This makes no sense to me. I laid out all of my symptoms, many of which seem foundational to an MS flare up. Burning feet, then burning legs, then balance issues, can’t run anymore, then mouth pain, then lots of muscle twitches, then shaky arms, unsteady hands…

I don’t understand how his flags didn’t go up.

He ordered a “small fiber neuropathy test”. As if that would be a better explanation. He said he didn’t recommend putting myself through the headache of a spinal tap, but if I was adamant about checking it off the list he could order one.

It’s always a weird feeling when you end up coming off as if you “want” ms…trying to convince the dr to at least entertain the possibility. It confuses me. It’s common knowledge that a clear MRI doesn’t rule out MS, correct? especially if the symptoms are there.

Anyway, seemed like a wasted visit. I have an appt with an MS specialist next week, thank goodness. My hope is she will read the MRI herself, and share her thoughts more clearly on how I am presenting and what a next step should be.

Side note…It seems to be progressing quickly, as I have new symptoms every few days, without losing any of the older ones. My biggest fear is because im presenting with motor issues, being older (40) at onset, male, and no visible lesions on the brain, that it could be PPMS. I’ve read it has a unique presentation. My symptoms have been going on for months. I took a 5 day med pack, and symptoms came roaring back as soon as they wore off. That sounds less like RRMS to me :frowning:

If anyone has any thoughts on how to better handle my next appointment, I’m all ears. Thanks for listening.

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Hi Seamus

What was the 5 day med pack?

If I was you, I’d look it up.

Other than that tell the MS specialist your history.

all of it, don’t leave out any symtoms that you have/had.

Wish you luck.

Carole x

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Hi, I saw a private neurologist 3 yeas ago who suggested i may have MS, then saw a NHS consultant who was addament it wasnt and after tests to disprove his thoughts i was offered a LP to “cross MS” off the list. my symptoms had gone by that time and i was told waiting wouldnt make any difference to treatment, although he still didnt think it was MS. however it did cos now i was diagnsoed with SPMS in May and im waiting for a new medication to be available.

write down any questions and a list of symptoms - dont be fobbed off, get the answers you need.

Hope it all goes well, take care

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Hi, I was seeing neuros every 6 months and they couldnt explain my probelms, which were;

bowel and bladder accidents

daily stumbles/foot drop

arm and leg stiffness and spasms

severe fatigue

It actually took 22 years to get my PPMS diagnosis, after going well out of my area to see a proper neuro in Liverpool.

It is possible to have MS but not get a diagnosis.

Hope you are not waiting much longer.

Boudsx

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Thank you for your replies.

I actually saw an MS Specialist (Boston) today and she too believed strongly I wasn’t dealing with MS. (She went through my MRI with me, both brain and cervical, and claims there is no evidence of disease.) Her reasoning is based on these points below…

  1. My symptoms are happening and progressing too quickly. She claims that is not how MS presents. It takes years for symptoms to advance and become as widespread as Im experiencing.

  2. She said sensory symptoms are often accompanied by bladder and sexual dysfunction, which I have neither.

  3. MS feet issues dont often present on the “soles” of the feet, but rather the foot as whole.

She did say she is more than happy to conduct a spinal tap, but she really didn’t believe it would be of benefit to me. She also said that their “accuracy” is quite suspect during the initial onset of symptoms.

I am scheduled to see another specialist on Friday, and I will follow through with that appointment.

Is it worth me pushing for a spinal tap? or will that not change anything without MRI evidence ? I feel like im learning first hand why it becomes a waiting game.