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Working diagnosis of demylation disease - Steroids

Hi all,

I saw a neurologist four weeks ago and I am due to have a brain and neck MRI next Thursday. I then have a follow up appointment two weeks after with the neurologist. In his clinic letter to my GP he advised that due to his working diagnosis of demyelinating disease from the combination of central nervous system findings, that if i deteriorated to prescribe Methyl Prednisolone for five days. I have the following questions if anyone can help :-

  1. Does this sound as if it is MS? He said it was likely, but has not specifically said that on the letter.

  2. Does anyone think it would be a good idea to have the Prednisolone? My husband is concerned that we would be treating something unknown, but I feel so awful and if they would help it would be amazing!

  3. After reading lots on here I was expecting it to all be very hard and slow to get to diagnosis - but it seems its only a few weeks away until I know what’s happening! Is it likely he won’t commit to a diagnosis after my MRI results?

Thanks in advance for any advice or answers you can give me!!

Carrie xx

Hi Carrie, as your neuro has prescribed Prednisolone, if needed, he would be pretty sure what he’s giving it for, I don’t think he would be treating ‘something unknown’.

After he has the results of your MRI…he might be able to give you a diagnosis. This is often not possible because you might be required to have some more tests done, if you haven’t already. Try not to build your hopes up for a dx, it could take longer, MS is notoriously difficult to diagnose as it mimics many other complaints.

Good luck

Rosina x

Thanks for your reply Rosina, thats pretty much what I thought!!

Carrie x

Hi Carrie,

Obviously it won’t be the same for everyone but I can tell you that I had an MRI at the beginning of April 2015 and was advised on the same day that it was likely to be MS.

Right after my MRI, I took Prednisolone for 5 days and it did wonders! I had been unable to use my right leg/foot and after 5 days of steroids I was able to walk again.

It then took 2 months until I saw a specialist and was officially diagnosed.

I was told it took a while for official diagnosis as they have to rule out other things that can mimic MS. That involved various blood tests. My neurologist also didn’t recommend a lumbar puncture, or I think it would have taken longer for diagnosis. However, as you have already seen a neurologist it sounds like you have already had some investigation. My MRI was urgent so the only thing I had before it was a physical examination from the neurologist.

I don’t know what your symptoms have been but I would trust your neurologist!

The only other thing I would mention is that I felt very ill for a few days when I stopped taking the steroids. I was prescribed 500mg per day and the dose was not tapered off.

Good luck with your MRI.

Jade x

Hi Jade,

My MRI is urgent as well and all I’ve had was a physical exam with the neuro. Did you ask at your MRI what they thought or did they tell you?

I’m going to my GP in the morning to ask about the steroids. I have lots of the main symptoms of MS and have had to resort to a stick to help with walking. My GP has given me Gabapentin which has helped with tingling/numbness/pain (although the outside of my ear is buzzing annoyingly tonight!!) but the fatigue i have is still awful and the balance issues too!!

I am seeing the neuro 21/2 weeks after the MRI but if it will help me in the meantime it would be great and we are also going on holiday straight after that for two weeks and i didn’t want to take the steroids then!! I’ll keep in mind about coming off them.

You’ve been a great help - thanks.

Carrie

Hi Carrie,

I have had a similar experience, in May i had numbness in my arm and thought it was carpal tunnel! I went to gp and private neuro and had an appointment where he said i think its spinal inflamation, and it may be MS which went over my head to be honest. I had an MRI and it took a few weeks to get a follow up, in the meantime consultant wrote to GP cc me saying MRI showed demylination. On appointment told it was MS and further tests ordered on my nerves as i had an earlier eye issue that I had not connected. Consultant told me GP would know it was MS from his letter confirming demylination. So my diagnosis was a shock and i have not had a follow up yet from MS consultant or MS nurse assume it will come through soon. Good luck with MRI and meetings and stay pragmatic - we can not change it and lots of people are very active, loads of meds available etc. As i say early days for me and defer to more experienced people but stay positive. All the best Nicola

HI Carrie,

Sorry for the delay in responding, I’m just getting used to the site!

My neurologist went through the scans on the day of the MRI and showed me the abnormal areas. I think she said “do you want to know what I think it is?” I said yes as I had to know immediately, otherwise it would have driven me insane! Obviously she was only able to comment on what she could see.

They then prepared an MRI report and that showed things that my neurologist was unable to see on the day. If your appointment is a few weeks later, it sounds like you will have these full results when you see your neurologist.

I had to use a stick for about a month but since the steroids I haven’t used it again! I understand that they can only given you these steroids occasionally so I think they would only recommend them if you really need them.

I’m starting MS medication this week, to hopefully reduce the amount of relapses in future.

Please keep me updated on how you get on!

Jade x

Hi Jade, thanks for the reply!

my GP has given me a prescription for the steroid but as a just in case I get something acute happen whilst we’re on holiday - I’m happy with this as will see the neuro before holiday with the MRI report.

I’ll let you know what happens and good luck with your meds!!

Carrie x