Don't know what to expect?

New diagnosis and before diagnosis
1

Hi All…

Just wanting a bit of advice please. I am not yet diagnosed with MS, but it is strongly suspected, the dx i have at the minute is CIS. This was made by a Neuro that doesn’t specialise in MS. My symptoms started in June last year, and after having CT Scans, MRI and Lumbar Puncture. the MRI showed about 6 lesions and the LP was positive too.

After my last visit to the said Neuro, and another MRI, which showed no new lesions, he’s sent a letter stating that he didn’t want to see me until June of this year. Now i know thats all good news, but at my last appointment before christmas, he didn’t really seem interested in the ongoing symptoms, although he did prescribe Pregabalin, and said that he would see me in the New Year and review MRI, and also prescribe Amantadine for the Fatigue.

Anyway to cut a long story short, i contacted his secretary after this letter, and asked what about the medication for Fatigue, stating that i couldn’t wait til June for this. Anyway he prescribed me a 2 week dose without seeing me and told me to get further prescriptions from my GP. I was disgusted at this, prescribing me without seeing me???.

After this i went to The GP and asked to be referred to a MS Specialist Neuro, which i have been as i have received a copy of the letter from the original Neuro to the Specialist one. In this letter it states that in his opinion its just CIS, and that i’m anxious. I think his whole attitude is beyond a joke, i’m not anxious, i just want answers!!! if its CIS, why am i having all these symptoms still.

My question is, what do i need to expect from the New Neuro, and what exactly should i tell them?

Thanks in advance :slight_smile: x

2

Hi, well the fact that you have 6 lesions on your MRI, should be enough evidence to suggest there is something serious going on.

Regarding being prescribed amantadine, without being seen…as the neuro had seen you previously, I wouldnt be too concerned about that hun.

When you see the specialist neuro, tell him your symptoms and worries…but I wouldnt tell him of your disappointment with the last guy.

In my expereince they dont like to comment on other doctors. Ive been in that same position and it went against me, even tho th MS nurse agreed with me.

luv Pollx

3

Hi Poll,

Thanks for your reply, i wouldn’t discuss my experiences with the last Neuro, as i know this does go against you, it shouldn’t but unfortunatley it does. I am just disgusted that he thinks i am just being anxious, and dismissing the ongoing symptoms that i have.

I have been to the Neuro physio today for my 1st appointment, which was arranged by the MS Nurse. This went well i think although they are in agreement with me that my left side is now much weaker than the right side. This does leave me wondering if this is a symptom of MS, or maybe its caused by the lesions on my brain??

I guess i’ll have plenty of things to discuss with the Specialist Neuro…lets just hope i get some answers and not just dismissed as being anxious!!!