still waiting....

Sorry for the moan…just need to let it out…Just a bit fed up of limbo land still…only been since May and I know it could go on longer… it feels interminably long waiting, to know anything at all would be good!

I’ve had worsening symptoms over the weekend but then I had a very stressful week which could account for it. I dont know if spreading of and having symptoms more often makes up enough reason to give MS nurse a ring. They gave me an email address but I cant get it to work, maybe written down wrong. Getting through on the phone doesnt seem to work, already left a message 3 weeks ago with no response. It just seems like nothing works and Im fed up with trying.

I have tingling and pins and needles in my face and tongue, it used to be just periodically, maybe once/twice a week, now its every day and seems to be there from when I wake up, along with intense pins and needles in my hands and arm on waking too and Im not leaning on that particular arm. I cannot pick anything up or turn my alarm clock off with that hand. It goes away after I start moving about or ten minutes but I am still tingling for the rest of the day. Do you think I should try MS nurse again?..

Im due to see neurologist again once results my August mri and NMO/MOG blood tests come back from Oxford, all well overdue now, but chased twice and still not back. But they cant see me until got them, discussed them and decided, then send me an appt, so I could be waiting longer yet.

I just need to get some patience from somewhere outside of myself!


I no how you feel. I had my mri on 22nd September, had my six week check up on 2nd oct. They didn’t have the report from the mri so couldn’t really tell me anythjng. The professor of neurology said he thinks it’s mild ms but the dr I saw before him was like it’ll probably go away on it’s own and I was like no it won’t. He was like clutching at straws. I had my lumbar puncture the day after which hurt like a bitch.

The drs secretary rang me last week saying they had an appointment for me the day after for lumbar puncture and I said I had it. I did ask her about results for lumbar and they should be back end of this week but the report for the mri are taking forever. I asked her about getting a diagnosis and she said the dr will write to me with it and I’m on a waiting list to be seen in 3 months. I was put on steroids to help with the electric shock/ tingling feeling I have.

So know how your feeling.

Oh, I do feel for you both, Julie and Donna. It’s bad enough having horrible scary symptoms without this godawful waiting around. And with all the information available on the internet just lurking there to scare you stupid, it must be horrible.

In so many ways, it would almost be a relief to get a diagnosis of MS. Then you can figure out what to do next, what drugs to take and learn how to deal with it.

It’s so wrong having these long waits for answers.

Just keep in your minds, right now you don’t have MS. Try as hard as possible to forget about it. But once you do get the answers, you’ll either definitely have it, or you won’t. And you are both strong, sensible women, you know that you’ll deal with whatever comes your way. And equally, whatever your answers tell you, we’ll still be here for you. Even if you’re not put into our gang!


Thank you Sue. That’s lovely. I sometimes wake up shaking and have to wake my husband up. I’ve been told that if the feeling of eclectic/tingling feeling doesn’t go in 3 weeks after takin steroids I have to go back to my dr to be put on something for a longer period of time.

It’s doin my head in now. I just want to know what’s causing it all.

Thanks Donna and Sue I had 3 days iv steroids and put on gabapentin in May, nothing else since and symptoms worse. You are right Sue, its not MS til the neuro sings, I’m going try forget it if my feet, legs, face, tongue arms stop reminding me, and ridiculous buzzing like a bee in my ear. Tomorro is a new day. Thanks your support. Hope things improve Donna, go see yr dr if not Julie

Yeah Jules I will. He should have the report from the 6 week appointment so will be contacting him then

Hi alll, looking for some advice. Had mri, showed two white spots, neurologist now ordered lumbar puncture and MRI full spine. Am 35 years old and extremely worried, in your experiences would you think this is definitely ms? I have been reading about other causes of spots however I seem too young to have any of these. I should have mentioned I suffer from burning in hands/feet, fatigue, very stiff feet after sitting or lying down.

Hello Clare

Just like Julie and Donna on this thread, we can’t possibly second guess the neurologist.

All you can do I’m afraid, is have the extra tests then:

  • wait for the neurologist to review all the results,
  • have a think about it for a while,
  • play with executive toys on his/her desk,
  • dictate a letter,
  • wait for the secretary to get to typing it (although why neurologists can’t just as quickly write their own letters, I don’t know - probably just to make them feel important!) and eventually,
  • bring you in for an appointment.

And at that point, you ‘might’ get an answer. The neurologists don’t tend to rush into diagnoses. We should perhaps be glad of that. If you do end up getting a diagnosis of MS, you’ll feel that at least it’s been thoroughly investigated. No one could accuse the doctors of being too hasty!

Try not to worry too much. What will be, will be. And panicking about the possibility of MS isn’t going to change anything.

Keep talking to us on here. If you have more questions, you can always start a New Thread.

Oh, and welcome to the forum none of us would choose to qualify for it, but it’s a good community.


Sue , thank you for your kind words. I think you go into complete panic when you hear you have spots on the MEI! Just need to be patient and wait for my tap/spine mri . Just wish it was a lot quicker.

take care


still in limbo land and been discharged from neurologist following normal nerve conduction, negative LP. Still experiencing toe twitching , have erythromelagia and occasional finger numbness.

mri 2018 read: 2 tiny focci involving the Callosal septal interface at the level of the corpus callosum and adjacent to the fourth ventricle. Whilst given clinical hx demyelination cannot be excluded.

neuro dismissed mri stating this is ‘normal’ and didn’t even listen to me when I was trying to tell him my symptoms!

Any advice?

thank you