I went away this week, half term holiday! Came home to 2 letters… the first was confirmation that I was getting the lumbar puncture, the second was confirmation that it had been done… other than that I have heard nothing. I am hoping I’ll get an appointment soon. I’m assuming we have to get the lumbar puncture results via an appointment, as we might be receiving a diagnosis. But who knows with Covid. If I hear nothing in the next week, I’ll be emailing the nurse to see what she says. And if that gives no joy, I’ll call the hospital. Here’s to hopefully hearing news soon! #inittogether! How are you feeling about it all?? Xx
Hope you enjoyed your holiday. Phoned Neurology today, and the LP results are in! But the bad news is my consultant has left and they are not sure who’s seeing me, if at all, could be telephone call or letter because of increase in covid again. But if my LP does show oligoclonal bands would they write to me to tell me that? Also, the previous consultant wanted the MRI reviewed but that’s not been done! I’m sad and frustrated…seems I’ll be in limbo land a while yet Take care Abs
Oh no! I’m sorry to hear that! How are you holding up? Such a frustration.
I’m a member of an MS Facebook group and some people have been diagnosed by letter, so it can happen, not sure it’s a great way of doing it. But with COVID, I guess we have to accept these things. Hopefully you’ll hear from a new neurologist soon. I really hope they get it sorted quickly for your sake. Thinking of you, things will be sorted, eventually.
Thanks BettieVR, I’m having a few down days, pain and falls have been bad this week and left foot is numb again. Feel like I’ve been in limbo forever! I really hope you get news soon too. Out of interest what Facebook group are you on please? I’m really grateful for any support I can get these days. Thank you for thinking of me…Abs
Hey its MS UK. Defo take a look and join, it’s very much like this place, but in Facebook. I’m hoping this new lockdown doesn’t have too much effect on the speed of getting results… although I am guessing it will. Chances of a face to face appointment have just plummeted!
Thanks, I’ve joined! Apparently the results from my consultant will either come in a letter or I’ll get a letter about a phone call! Neurology are seeing minimal face to face! I’ll update when I hear anything. Fingers crossed for news for you too soon. Take care…Abs x
Hi I saw this post I know it was from a while ago, I’ve had 8 lumbar punctures 1 being successful through radiology I am having my 9th Lumbar puncture next Thursday in the Radiology department but my last lumbar puncture done 2 weeks ago I had a bleed they nicked a blood vessel and even though with having 8 I’m still very scared I know there not nice I’ve had 8 done I know the feeling I remember it so well but I thought I wouldn’t think about it as much as an outpatient
Hi Polly21,
I’m so sorry you’ve had to have so many!
I have no real words of reassurance, but just support. You know what to expect, in some ways that makes it worse. When is your appointment?
Make sure you have lots of treats for after.
Sending you all the support, i hope it all goes smoothly and you can have a rest and relax after!!!
Hi,
My appointment is next Thursday the 7th of March and I know for some reason knowing what I’m expecting feels worse I don’t have MS I have idiopathic intracranial hypertension I was diagnosed back in October in diamox by the headaches ringing in the ears is very persistent so they want to know if the pressure is raised or am I just suffering with migraines I have and appointment for the 3rd of April for the headache clinic to asses my headaches they had me on naproxen as a inpatient as and outpatient I’m on vimovo and paracetamol the nausea is still there but they had me on nausea drip in the hospital I went into the emergency department as pale as a ghost and then got kept in for ten days CT scan was clear Have calcium deficiency very weak and tired all of the time I don’t know if it’s from the medication we asked if it could be brought on by stress they don’t know but the swellen has gone done in the optic nerves but they don’t know if it’s gone or just gone down slightly the last time the pressure was 26 so it was only slightly raised enough to diagnose me but I don’t know what to expect if it is any higher or if it’s still the same does that mean the medication is not working thank you so much for replying I haven’t had anyone to ask questions to doctors answer you short and family don’t understand
I’m sorry to hear that, it must be so scary and stressful.
Have they tested you for hyperparathyroidism? I only ask becsuse my partner has calcium issues and it was linked to a growth on his parathyroid, which can be removed.
Make sure you have a list of questions you want to ask the doctor about. And keep asking until you are satsfied with the answers. A good doctor will take the time to listen and answer questions. This is YOUR health and you have the control here.
You are the one that has to live in your body
I really hope it goes well and that you can find a medication that will help.