This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all,

I have suspected MS but diagnosis is taking forever on the NHS. I've been given an NHS MRI appointment for late January, so have decided to pay privately to get it sooner.

My question is, should I pay for a head or cervical spine scan? Of course ideally I'd do both (my NHS scan is for both) but doing both privately is tad expensive for me as a post grad student!

My idea is to scan the region that is most likely to show lesions. I've decided on this, on the assumption that certain symptoms may correlate with lesions in specific regions? (I've no idea if that's true, just a current working hypothesis. I'm hoping more experienced fellows here know?!)

My symptoms are:

- Weakness, numbness, pins and needless, burning, in my hands, arms, legs and feet.

- Numbness in groin area (but full control over bladder)

- Sharp shooting pain when walking emanating from my feet and shooting up my legs (this was severe 5 weeks ago, but now just a mild tingly sensation and I can very much ignore it)

- Constant pressure on my chest, feeling as if I'm being hugged tightly.

- Lack of strength, numbness and sharp pain in fingers (this is by far the most troubling condition). Typing is extremely difficult. I can now only use my index fingers to type. Fingers, suffer from high spasticity, making it difficult to co-ordinate them when typing, tying my laces, cutting my nails, or generally handling things. (loads of broken cups!)

- NO dizziness. No vision issues. Maybe a little fatigue, occasional throbbing/minor headache but not overly disconcerting.

Intuition wrote:I have suspected MS but diagnosis is taking forever on the NHS. I've been given an NHS MRI appointment for late January, so have decided to pay privately to get it sooner.

My question is, should I pay for a head or cervical spine scan? Of course ideally I'd do both (my NHS scan is for both) but doing both privately is tad expensive for me as a post grad student!

My idea is to scan the region that is most likely to show lesions. I've decided on this, on the assumption that certain symptoms may correlate with lesions in specific regions? (I've no idea if that's true, just a current working hypothesis. I'm hoping more experienced fellows here know?!)

My symptoms are:

- Weakness, numbness, pins and needless, burning, in my hands, arms, legs and feet.

- Numbness in groin area (but full control over bladder)

- Sharp shooting pain when walking emanating from my feet and shooting up my legs (this was severe 5 weeks ago, but now just a mild tingly sensation and I can very much ignore it)

- Constant pressure on my chest, feeling as if I'm being hugged tightly.

- Lack of strength, numbness and sharp pain in fingers (this is by far the most troubling condition). Typing is extremely difficult. I can now only use my index fingers to type. Fingers, suffer from high spasticity, making it difficult to co-ordinate them when typing, tying my laces, cutting my nails, or generally handling things. (loads of broken cups!)

- NO dizziness. No vision issues. Maybe a little fatigue, occasional throbbing/minor headache but not overly disconcerting.

Hi and welcome to ThisIsMS, Intuition.

To your question, "should I pay for a head or cervical spine scan?" my opinion is that you should wait for the January NHS appointment for the MRI. My first three MRIs returned "normal" results. Lesions leading to my MS diagnosis appeared on my fourth MRI!

There are mixed opinions on whether lesions in specific regions correlate with specific symptoms.

I understand that your symptoms are troublesome and of great concern to you; but since the cause of MS is unknown and there is no recognized effective treatment for it, I see no urgency for the MRI. In my opinion, the expense of a private imaging procedure is difficult to justify; your time until this late January appointment might be better spent researching and investigating the more likely causes of your symptoms.

MS is a diagnosis of exclusion; many, more likely conditions should be ruled out first. Since I know that all your symptoms are consistent with a vitamin B12 deficiency, I hope you have started by ruling that out first – a serum B12 test alone is not adequate to determine a deficiency (many things can make a B12 blood test inaccurate… even something so simple as taking vitamin B supplements before testing). Initial testing should include a homocysteine test and a methylmalonic acid test.

If you have a B12 deficiency, it can be easily and inexpensively treated; if caught early, most symptoms are reversible.

If a B12 deficiency can be ruled out as the cause of your symptoms, there are many more conditions to be investigated and excluded before an MS diagnosis should be made.

Thanks for your B12 advice lyndacarol... Can a GP refer me for a homocysteine and methylmalonic test or does it have to be a neurologist?

Points also much appreciated re MRI scans. It helps me understand why its been treated with little urgency. That said, some treatments mentioned by the likes of Dr Jelinek give me hope that I'll be able to manage it if it does prove to be. The earlier the intervention the better.

Intuition wrote:Thanks for your B12 advice lyndacarol... Can a GP refer me for a homocysteine and methylmalonic test or does it have to be a neurologist?

Points also much appreciated re MRI scans. It helps me understand why its been treated with little urgency. That said, some treatments mentioned by the likes of Dr Jelinek give me hope that I'll be able to manage it if it does prove to be. The earlier the intervention the better.

Yes, a GP can order a homocysteine test and a methylmalonic acid test for you. A neurologist could order them, too; but the ordering physician does NOT have to be a neurologist – or any other kind of specialist.