Very basically, following GP referral I had two MRI’s, a lumbar puncture, two CT’s, an ultrasound and a whole battery of bloodtests back in Jan (private). I had a consultation in July (NHS) followed by another MRI the week after and a CT to rule out sarcoidosis. The neurologist said it was ‘99% likely to be MS’ but they would compare the MRI to the one I had in Jan to tell for definite and determine what type. He said an MS nurse appointment would follow to discuss treatment and I would see him again in October (I have been given the appt). Since then, nothing. I don’t know if the MRI results will come in the post but I assume so. I am obviously keen to start appropriate treatment. I feel in limbo and my emotions are all over the place. I read other people’s symptoms and think “oh I’ve got/had that symptom” but never even thought to tell the Neurologist that.
Also, I am concerned about being able to provide my employer with written confirmation of the MS (having told them verbally all that I know), although they are incredibly understanding and patient.
Sometimes they wait untill the next appointment to give you your results, both times that I have seen the neurologist he gave me my results then even though I had the lp in January and had the appointment in April for the neurologist, it was all clear. But I still have symptoms like a numb fingers and toes.
Only I will see him again next April. As for your work you can’t tell them anything until you have results and your treatment sorted out. I did get a letter from the neurologist a few weeks later explaining what I had in some of the tests that he did.
No you’re not too impatient. Most people in your situation would be desperate to a) get confirmatory results, and b) start a disease modifying drug.
What you could do to speed up (hopefully) both is to ring the neurologists secretary. Ask whether the letter to your GP (they have to do this) has been dictated, and typed? And of course when you will receive your copy? You can also ask him/her for the contact details of the MS nurse. Then you can initiate contact and thus the discussion about treatment.
Letters from neurologists (in my experience) can take flipping ages. They often state things like ‘dictated 1st February, typed 15th April, checked and sent unsigned to avoid delay’! It would make you laugh if it was funny.
It may just be that the secretary’s are massively busy. Or that their procedures are slow. Or that there’s a long delay between the dictation and the secretary getting the tape. Whatever, you have to be quite sweet to them because they’re the gatekeepers. Only through them will you get anything done quickly.
Obviously, until you have the letter in front of you, or have heard the words from the neurologist, you can’t definitively tell your employer. Which is annoying. But it sounds like you have a good employer, so they’ll be on your side.
Meanwhile, why not start researching DMDs (disease modifying drugs)? Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid That way you’ll be familiar with the various drugs and when you do have the conversation with the MS nurse, you’ll be one step ahead.
Of course, anything you want help with, even just moral support, come here and we’ll try our best.
Yes, phone the hospital, ask to speak to the secretary of Dr XXX. Also ask for his/her extension number so in future you don’t have to go through the switchboard.