Last reply 3 weeks ago
How to get an MS diagnosis

I was referred to the neurology dept. for a MS assessment. I have been previously diagnosed with ME/ Fibromyalgia by a rhuematologist. The neurologist I saw for the MS assessment was not the same consultant who initially wrote to me to let me know I was on the waiting list for a MS assessment. I was surprised by that – is that standard practice? I was really hoping to see the neurologist who wrote to me.

Anyway, the neurologist I saw said I had had ‘lots of tests’ before and if ‘one is tested constantly, something would eventually turn up’. I have only had one blood test this year when I saw the rhuematologist and an ’emg’ test that rhuematologist arranged, even though it may have not been esp. relevant to me. (Prior to that, I had blood tests in March 2017 for ferritin and Vit D.)

In my MS assessment, the neurologist did a practical assessment – reflexes etc , and gave me a diagnosis of Functional Neurological Disorder. He said I could not have MS, because the symptons I have had since 2006 would have become much worse over time. I did mention that I had had a couple of flares lasting about 6 weeks that had affected the limbs on the right side of my body (the original symptons started on the left side in 2006). Although visually you would not notice any of the symptoms.
I don’t understand how the neurologist could rule out MS and diagnose me with FND without a scan? I waited 6 months for the appt. and it was a poor experience. Should I ask for a second opinion or even have a private consultation?

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laura-forde
3 weeks ago

I can only confirm my personal experience. I was referred to the NHS neurology department and decided to go private after being told of a 10 week wait. It cost £1000 for the two consultancy appointments and 40 min scan. Certainly here in Scotland you still need a NHS GP to refer you for a private neurologist. It is a deeply upsetting time for you and you need to make sure you are being listened to. I always listed my symptoms and my husband insisted on me talking about the next appointment the night before so during the appointment everything was covered. MS has so many different faces and my neurologist said the only way to rule in/out MS these days is a head/spine scan no matter how well the patient is. But he is a MS specialist. Hope this helps


suzy_twining
3 weeks ago

Thank you. That is exactly what I have been told subsequently by an MS organization. The only way to rule in/out MS is via a scan, not just by the physical assessment, as the neurologist did. I will wait for the letter from the neurologist ( I have asked for a copy), and then go to my GP and see if I can have either a scan or a second opinion, or a private referral even if I have to pay.


itsmewithms
3 weeks ago

I am responding from the US and know that protocol and access to Neuro specialists is different where you are. Fifteen years ago one of my feet wanted to stick out to the side one day while I walked. I could still walk fine and actually did a couple mile hike with my then 2 year old daughter and husband around a state park enjoying the fall leaves. I couldn’t straighten the foot when I walked but it didn’t hurt and also didn’t resolve itself over a few days. I went to a regular Dr that said it must be due to the nervous system as they couldn’t figure it out so they referred me to a Neurologist. The possibility of MS had been mentioned when I was pregnant as I had a blind spot in one eye that resolved in my third trimester. They said I should wait until after I delivered for an MRI as they were, at that point, uncertain if MRIs could impact a fetus. My vision cleared up in the third trimester (those hormones are amazing ;-0 ) and I didn’t have symptoms until that walk when she was 2…so 2 1/2 years later.

The MRI then did confirm MS as they could see lesions and luckily the neurologist I saw at the U of M (minnesota) was a MS specialist and handled me case. He started me on Copaxone (not terribly effective but was what was available at the time and very safe, especially for a woman in child bearing years although I wasn’t hoping to become pregnant again).

But Yes- you need an MRI and it seems like it is warranted at this point. One was used in my diagnosis (after other tests ruled out other causes) and I have one at least annually to check on disease progression whether or not I have relapses. Sometimes you can’t tell what is happening in your brain as you rewire around the damage before you notice symptoms. It is called neurological reserve if you want to use a term to search on google.

I had a case if Meralgia paresthetica early this summer where the top of my thigh was numb and my foot drop worse than normal causing me to stumble and balance be off. A MRI was ordered but there were no new lesions and didn’t appear to be activity so no more action was taken. My neuro also didn’t think this was being caused by MS as the LFCN is not part of the central nervous system (which is supposed to be what MS attacks) so he recommended an EMG test be done by the office that did my hip replacement so they could see if there was damage due to that. The EMG came back “normal” in their office so he repeated it and agreed. What I was experiencing must be due to MS. I have started some new PT and through time and some of the recommended exercises the numbness has largely gone away.

In the last month the vision in my left eye has been a bit blotchy and seems to have blind spots. This has happened to me over the years and the impact can be measured in a “visual field test” although I haven’t had one this time. I called my eye Dr in case he wants to have me complete one just to measure how much my vision is being impacted. I think I can still see fine as I am right eye dominant and don’t really notice it much unless I close my right eye ;-0

I’m sure that you have done some research on your own but this article lays out some diagnosis options. You can also use the tags below your entry of Diagnosis or Newly Diagnosed to see other conversations on the topic. MS can be hard to diagnose so it is an active topic. This is an article I saved on diagnosis that may be helpful-

https://www.tecfidera.com/en_us/home/additional-support/understanding-your-condition.html?cid=PPC-GOOGLE-Tecfidera_DTC_Unbranded_Health+Concern_Exact~S~PH~BR~NER~DTC~CON-ms+diagnosing-NA-p31470209914&gclid=Cj0KCQiAtrnuBRDXARIsABiN-7DJ2BmUoUhGQ9kno5DmnWsV1icmSsRr8gWjS_xg5NOCWH4pVfgnHPEaAmwNEALw_wcB&gclsrc=aw.ds

Sometimes a person can just have a “CIS” a Clinically Isolated Symptom so a Neuro may not want to prescribe a DMT (drugs) until they feel it is warranted which would be after a person has more relapses. Many of us, once we know all the possible symptoms, acknowledge that we have had many attacks by the time we are diagnosed but they were always explained by something else. There are now many DMT options and opposing theories on if a person should ease into treatment taking the softer approach or really hit it hard to stop any progression and use the strongest drugs available immediately. I think different patients have different convictions as well. This was an interesting article on DMTs although keep in mind what is approved and prescribed will vary by country

https://www.healthline.com/health/multiple-sclerosis/how-to-evaluate-your-ms-treatment-plan?utm_source=facebook&utm_medium=opt&utm_campaign=tysabri-retargeting-ms-desktop&fbclid=IwAR1oCSj5oRuEzJc2B4mTiwvcw_Qnwgsn-3zRzy3mU_s1cjLsvZV59_DYjsQ#the-bottom-line

Good luck, this is a good resource to find and by poking around and asking questions you should find what you need-

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