Last reply 1 year ago
The Wait Is Hard

Did it take along time for you to get a confirmation whether you have MS or not? The MRI of my brain showed demyelination so I am having another MRI of my spine, more blood work and a neurological vision test done. If they are inconclusive the my neurologist is going to do a spinal tap. The waiting is excruciating!!!

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stumbler
1 year ago

@jofamof5 , no Neuro wants to give a diagnosis of MS unless they’re sure. Once the diagnosis is given, it can’t be ungiven!

In fact, the diagnosis must satisfy the Mcdonald-criteria, https://www.mstrust.org.uk/a-z/mcdonald-criteria . Have a read through and see whether you can recall any unexplained medical situations, which may help the Neuro make the diagnosis.


redrighthand
1 year ago

From when it was suggested that I might have MS, my diagnosis was actually very quick. I suppose I have that to be thankful for, as I’ve read of people on here who have had to wait years for an official diagnosis.

I had what turned out to be a relapse (double vision and balance issues) on 11th October. I was referred for an MRI which I had on 19th October. My results showed at least thirteen lesions and I was given a diagnosis of MS on 24th October. I’d had two other incidents (numbness) which have been now retrospectively been attributed to MS so that, combined with the lesions seen on my MRI, were sufficient to meet the McDonald Criteria.

I’ve since had a second MRI which showed new and expanding lesions (as well as previous lesions shrinking) so my neurologist is more confident in the diagnosis.

@jofamof5, I hope you don’t have to wait too long to hear one way or the other.


Anonymous
1 year ago

Over a period of more than two years, I went to the doctor every now and then with another weird symptom. Each time the doctor reassured me that it was due to my stiff neck muscles and that it would be better if I took a dafalgan and a hot shower. It was nothing serious if it would go away after a week or two or three. And each time the symptom disappeared after a week or two, three or four. So I was actually never worried it might be something serious.

Luckily I have a very good physiotherapist, which I started seeing for to loosen the muscles in my neck. He put the pieces together and referred me to a neurologist. But it wasn’t until I actually saw the white spots on my MRI that it hit me that this was something serious. Then I had a lumbar puncture to test my spinal fluid and I had to anxiously wait a month for the results, which was the worst month of my life.

In retrospect, I’m so relieved that I’ve only had to worry for two months instead of two years. My tip would be to try to keep yourself busy and distracted with your daily activities but also find someone you can talk to about it.


jofamof5
1 year ago

thank you everyone for replying. I had symptoms over a year and a half ago. I just got over bronchial pneumonia. So my doctor told me it was from having a serious infection I could have a secondary problems from that. I was so miserable and almost in a wheelchair I missed like 2 weeks of work. I could barely walk. I told the doctor it made since. The symptoms kind of subsided. I had smaller flare ups now and then. This time it was really bad so that is when my doctor finally did a MRI of my brain and referred me to a neurologist. That’s where I’m at right now.


potter
1 year ago

It took me at least ten years to get a doctor to listen to me but only a month to get my MRI results back. Between my family history and the number of lesions on my brain they didn’t bother with the spinal. Potter


Anonymous
1 year ago

@jofamof5 I found it a relief that after the MRI, I was not going crazy and had doctors looking out for me. So I hope you can find some relief in that thought too. Take care!


thecuriosity
1 year ago

Basically times may vary depending on whether your MS relapses get caught in the act on an MRI! Like stumbler wisely points out, a diagnosis like this can’t really be unsaid, you do not want to get it wrong.

With something that doesn’t present constantly this can be really difficult, or the sumptoms can get confused.

They told me I was ‘very lucky’ as both my MRIs happened while relapse activity was pretty clearly happening (this definitely did not make me feel lucky at the time though) but I still had the spinal tap and 2 MRIs to be sure (and a ct scan, so much blood taken, and a night in a stroke ward because they didn’t know what to do with me.)

They’re doing their best and I know it’s frustrating, but just know that they’ll do what they can to help you however long it takes.

Hi there! Waiting can be very hard, but it is also somehow better to wait. My first episode of Optic Neuritis was in 2012, and then I had them every year (ok, in 2015 I was diagnosed with “pericarditis”, but now I know it as a mere MS Hug). So, when I went blind on my right eye in September 2016, I thought ok – enough of this shit and stormed to my GP demanding a neuro appointment. Not another ophthalmologist, but neuro, straight away. It took me 6 months to confirm the diagnosis: head + cerebrum MRIs, blood tests, spinal tap, evoked potentials, was sent to another hospital for “second opinion”. But when I had my diagnosis confirmed in February, there was no shock, there was no pain, I was prepared, I knew my options. So don’t stress about it too much, worrying doesn’t affect the future outcome, only ruins your “today”, everyday.

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