Help, my GP is not sending me to a Neurologist

New diagnosis and before diagnosis
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Hi everyone

I have been a silent observer for a few days.

I am currently in need of advice on how to get my GP to refer me to a neurologist.

I have been to 2 GPs, the first thinks my symptoms are as a result of low haemoglobin, while the second thinks they are caused by anxiety and stress.

It all started around January 10th. I noticed an occassional wobbling in my jaw when I speak. I panicked a bit and began to watch it. A few days later, I noticed muscle spasms in my hand with tremor in my right hand.

The spasms and the tremor went away and got replaced by twitches all over. From my ears to my arms, calves and feet. The twitches were usually followed by pains in my joints (knees and elbows) and in the back of my palms.

I went to see my GP, she ran different tests, all came back normal except for low haemoglobin. She placed me on B12 supplements.

The symptoms didn’t get better, so I went to see a second GP, who said it was stress and anxiety. Since then, I have been on Vit D, calcium and magnesium supplements.

The jaw wobbling has stopped but I still have the twitches all over, especially in my calves and legs now. I also have a pin prick pain in the middle of my pinky finger and seem to have a funny sensation on my right pinky toe. I don’t have any numbness.

In the first week the symptom started, I was very fatigued but that went away after I started taking the B12 supplements.

I have hypoparathyroidism, which is responding to treatment, my TSH was 1.09 in January. I was itching badly on my back in January (not as bad as when I had issue with low thyroid though. This was much milder). The itching is fully resolved now.

I am really worried I am developing PPMS. I think it may be PPMS because I am 39 years old and also Black with a history of hypothyroidism.

How do I convince my GP to send me to a specialist before things get bad?

Please help

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Hi

To be honest your symptoms don’t sound like MS as they are too generalised. You say you have hypoparathyroidism, and hypothyroidism and low haemoglobin, and the symptoms you have sound much more related to those.

Waits to see a neurologist on the NHS are many months - 8 months is not atypical.

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I’ve said it a few time on here - use the N-word. No, the other N-word!

Negligence. The medical profession is rightly scared because they can be sued for incompetence.

Write to your GP and tell him/her that you are not satisfied with their diagnosis or attempts to date because they are treating the symptoms rather than an underlying cause. Needs to be in writing as it will have to go on record. If necessary, hand deliver it to the surgery and get it date stamped, initialled and they give you a copy.

Hopefully, it’s not MS but deficiencies in D and B12 are common among MS folk. As are spasms. Ask for an URGENT Neurological referral to eliminate MS or other related conditions. Also ask if they can commission a Head MRI themselves. Some but not many GP’s do this and it will certainly shorten the diagnosis period because the first thing a neurologist will do will be to order an MRI. No harm in asking.

The point about the letter is that it provides a date marker about the time when you first asked the question. It’s no substitution for a diagnosis but would give you litigation comeback if they ignore you. Woe betide them if they fob you off and you turn out to be right. That’s your leverage. It works because most people won’t be so determined, so it’s easier for them to roll over and comply with your wishes.

I wish I’d followed my on advice years ago, but I didn’t know then what I know now. I have used it later, when I made suggestions to my MS Doctor. I’m now the subject of a MDT (multi-disciplinary team) reviewing my case.

Hope that helps.
Graeme

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Thanks for the reply @Ziola and @GCCK

Still yet to get a Neurologist appointment. But my doc ordered tests for Magnesium, Calcium and Vit D. Waiting for the results of the tests.

I started on Vit D and Magnesium supplements last week. Thankfully, the spasms have reduced significantly and I also don’t get the tingling sensation anymore.

Thanks

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Good to hear that some of your symptoms have reduced a bit.

Magnesium deficiency is very common, and gives a lot of neurological type of symptoms, especially muscle twitching, tingling, muscle spasms and ‘internal shaking’. Magnesium is necessary for muscles to relax, and is important to stop nerves being over-stimulated. I’ve been there, had that! It is very common in women who are in peri-menopause. That’s when it hit me.

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