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Private appointment?

Hello, I was just hoping for a bit of advice please. I’m a 53 year old male and I’ve had symptoms for a while. I’ve had several blood tests, brain mri, catscan, nerve conduction tests. All with nothing to show. The main symptoms are leg pain, numbness and weakness and also fatigue. I’m overdue my neurologist appointment by 3 months already but last time it was 13 months late. The question is, should I ask my Gp if I can pay to see a different specialist because I don’t seem to be getting anywhere with this one. Ms has been mentioned and I think I should have a spine mri and/or a lumbar puncture to rule it out. Could it possibly be Ms even after a negative brain mri? Thanks.

Generally MS is detected by a brain MRI. It’s possible that you could have lesions in the spine rather than the brain, but the neurologist isn’t just using the MRI / LP results to assess your likelihood of having MS. They should have also done a physical neurological examination. Some results from a physical exam show quite clearly when a person has the type of neurological damage caused by MS.

However, as you still have symptoms which you need to get an answer for, you probably should be pushing for an LP and spinal MRI. Given that your appointments are being delayed all the time, it might be that referral to a different neurologist might be useful, but your GP may not have referred you to a named neurologist, but just to the hospitals neurology department.

Have you tried talking to the hospitals Patient Advice and Liaison Service (aka PALS)? The long delays in you seeing a neurologist seems unacceptable. And they may be able to bring your next appointment to a more reasonable time.

If you saw a neurologist privately, the initial appointment would probably be fairly reasonably priced (a couple of hundred pounds) but the tests can be utterly ruinous in cost. So in your situation, unless you have private medical insurance, I’d try a bit harder with the NHS first.

Sue

Hi Sue, thank you for taking the time to reply. I will do as you say and push harder with the NHS. The mri’s don’t worry me but the thought of having a lumbar puncture fills me with dread. It’ll be worth it though if it rules out ms. Thanks again.

And the short answer is YES.

Mine started in the spine, and it was a spinal MRI and an LP that got TIM changed to MS.
Do take Sue’s advice about PALS. They really can cut through the red tape and routine.

Geoff

Thank you Geoff. I’ll go have a chat with my Gp and see what he says. I know ms is different for everyone but do you mind me asking how your symptoms started and how they’ve progressed. Mine started around 3 years ago and I left it a year hoping they would go away, unfortunately rather than going away they’re just getting steadily worse. I’ll look into contacting PALS because the long wait for appointments seems excessive. Is 13 months the norm for this kind of thing?

Hi l dont have MS but did/do have a lot of the symptoms. I joined thid lovely forum for support when l was being tested. Brain and spine showed l dont have MS but l do have lupus and sjogrens. It turns out l was having a bad flare. As your gp to refer you to a rheumatologist to rule out lupus and other autoimmune diseases that can mimmick MS. Good luck

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Thanks for the suggestion, I’ve just looked on the NHS website and lupus and Sjorgens don’t seem to fit with what I’m experiencing. I’ll mention it to my gp though when I see him. I’ve had lots of blood tests but unfortunately I’ve not been told what they’ve been looking for or what they’ve ruled out. I know it’s a process of elimination but I don’t feel ms has been fully ruled out without a spine mri and lumbar puncture.

try not to stress too much about a lumber puncture its not that bad at all.When i had mine i was that scared i was sick but i harldy felt a thing the worse bit was the headache after it.

Thanks Mrs J, that makes me feel a little better. I’m just wondering if anyone else got a ppms diagnosis with a clear brain mri?

No, Anon, I don’t mind.

Mine started when my toes went numb. The numbness spread up my body. stopping at my armpits. I saw a neuro privately, and the numbness started to fade. He wanted a large set of blood tests (including B12 deficiency) and an MRI, and wanted me to have a course of B12 injections before the results came back. The MRI showed inflamation inside the spine.

The neuro then referred me to himself at his NHS hospital, and then it was an LP, and another MRI, and another MRI, and the Dx was changed from TIM to MS. That was just under 11 years ago - now I am EDSS 6.5, and effectively housebound (unless I get that mobility scooter).

Geoff

Sorry to hear that Geoff. My symptoms also started in feet then legs. Also weirdly lost sense of smell. Since then the symptoms have steadily worsened. The leg problems and fatigue are the worst. Hope you get a mobility scooter soon!

Hello again, hope everyone is doing OK. Still no appointment to see the neurologist yet so I saw my gp today. He agreed that the long wait for appointments is not acceptable so he’s trying to persuade the neurologist to let me have a spine mri. He’s hoping to get me one sorted for 4-6 weeks but If the neurologist won’t allow it I’ll have to ask for a referral to another specialist, hopefully a ms specialist. The brain mri I had was over 18 months ago. Does it always take this long to get any answers?

Hello again, finally got an appointment for a full spine mri. Hopefully at last ms will be either confirmed or ruled out. After all this time, oddly I’ll be relieved with either result. Its on the 22nd October so not long to wait now.

Hi Anon

Hope you get some answers very soon, good luck.

Pam x

Thank you pam, fingers crossed! I hope everyone on this forum is doing OK.

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Good luck!

Fingers crossed the MRI is useful, keep us posted.

Sonia x

Thank you, I will keep you posted although after my first scan I had to wait over a year for the follow up appointment with the neuro. I got fed up with waiting so I went to see my gp for the results.

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Hi, just had the whole spine mri this evening which went OK apart from feeling very dizzy and disorientated afterwards. Nearly fell trying to get off the bed. I’ll go see my gp for the results rather than waiting months to see the neuro. Does anyone know how soon the results will get to him so I can make the appointment? Thanks.

Hi there, just seen this. I take it you’re looking for other’s experiences. Are you sitting comfortably?

Sssue’s advice is worth its weight in gold. She knows her stuff. You will learn a lot when you are eventually assigned to a Neurologist & M.S Nurse if necessary. Or, the hospital may confirm another type of auto immune condition.

My L.P. was surprisingly straightforward. I had a rest afterwards & cup of tea before going home.

It took from 2004 to 2011 for my diagnosis. Sent from pillar to post & I complicated things by moving to a different area & hospital. Records were lost & test results were never chased up. I should have chased things up but trusted the professionals to do their job (big mistake).

After seeing my new GP he was cross at the lack of communication & arranged for me to see an emminent Neurologist. He was fantastic and I was with him over an hour. After a plethora of blood tests, scans, physical examination, mental abilities, my Neuro confirmed M.S but not what type. He referred me to a superb M.S Nurse.

A year or two later, the Consultant Neuro confirmed my type as PPMS and whilst he knew this was bad news he remained positive and referred me to an entire team of support services to make my quality of life better for longer.

In your present circumstances, you could phone your Neuro Secretary to chase up, make a note of names, date & time. If no response after a week, phone again. Ask when the results letter was sent to your GP & request a copy of all correspondence. You can ask any questions, request clarification and remember you are the patient needing support. The NHS is for YOU but won’t offer any resources unless you ask.

Unfortunately, my daughter is showing symptoms at a similar age as I was for first symptoms. She sees my Neuro and my MS Nurse. Her MRI shows something is not right but may or may not be MS. As the Neuro said he can’t rule MS out, he’s seen her every August for 3 years & monitors any changes.

Apologies for length of post, keep us updated and we’re all here to support each other. I wish you well.

Chrissie x