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Hi, I'm new and in limbo

Hi,

I am a 32 year old female and have been having neuro pain and symptoms on and off for over 2 years, i had an mri of my brain which was clear 2 years ago and was discharged from my neuro when i fell pregnant as all my symptoms cleared up and they couldnt do any more tests.

Two years on and i have been bounced from rheumatology to neerve conduction and finally back to neurology. I am now on my 4th 'episode' of symptoms. My first affected my eyes, i had terrible pain and visual disturbances but no optical neuritis. The next 2 'episodes' were in my legs and feet which included pain, burning, tingling etc. My current 'episode' is my hands, they keep going completely dead, more so at night, my arms and hands are so sensitive and i feel like there is constant pressure on my funny bone or on nerves all the time. 

My doctor has prescribed me amitryptiline and referred me back to neurology.. I saw my neuro 2 weeks ago and he mentioned 'cervical crod syndrome' although this is not consistent with my previous 'episodes' and i have never had any kind of accident or trauma that could have caused any damage to my cervical spine. I received the letter today that my neuro has sent to my doctor and it says upon examination i have 'brisk reflexes, clonus bilaterally and an upgoing right plantar' I didnt really know what these meant so have had to look them up and i just keep looping back to MS. This has been my suspicion for the last 2 years anyway but now they are finding consistencies with MS that i didnt even know i had.

The clonus in my feet is so bad that they ache terribly, my muscles jerk constantly, they never rest, this doesn't yet affect my walking or balance but it does make me uncomfortable and extremely twitchy.

I am now awaiting an mri of brain and cervical spine and a lumbar puncture appt but i am worried that even when these are completed that i still wont be any closer to a diagnosis, am i right to think this? I do feel good that for once they are taking me seriously and have found symptoms themselves rather than me listing them but i'm just exhausted and want some answers now, being in limbo is exhausting :( 

Sorry for the long post but i rrally dont have anywhere else i can let all this out. xx

Hi Mrs Green

Welcome to this site hello.

This is a great place to be as everyone is so supportive and there will always be someone who can answer your questions.

I'm in Limbo myself, so I know that the uncertainty, waiting etc is so frustrating. When our bodies are in pain and not functioning as they should, it's natural to want to know why. confused

I'm so pleased that your Neuro is taking you seriously. It looks like you already have clinical signs of something like MS (what he found on examination), but whether you will be diagnosed with that will become clearer after you've had the results of your upcoming MRI & LP.

There are things that mimic MS therefore unfortunately it sometimes takes a long time to diagnose. Having said that, the MRI & LP results may tell them a lot.

Some folk seem to be diagnosed quite quickly, whilst others have to wait years.

Please keep posting on here. We really do understand how you feel, and just sharing and getting support will help you over this uncertain time.

Let us know when your MRI & LP appointments come through.

Take care & get plenty of rest.

Bren x

Hi and Welcome,

It is a horrid situation to be in and unfortunately we all go through it. I have been dx with RRMS and apparently have had it for over 30 years. It wasn't picked up until I started getting myoclonic jerks, which are not very pleasant. Just remember we are here for you to have a moan, a rant or just want to get it off your chest. We are thinking of you.

Take care and rest lots.

Janet

x

Hi Mrs Green & welcome to the site happy2

The first thing is, you've definitely come to the right place. Everyone here understands how you're feeling and what you're going through and what's more there's always someone about to chat with too.

The difficulty with diagnosing something like ms is that there are lots of other conditions that can have similar symptoms, all of which need to be ruled out. The fact that your neuro has organised an mri and an LP suggests to me that he's definitely taking you seriously.

Unfortunately for some people it can take some time to get to the bottom of things but for others the diagnostic stage is shorter - there's really no telling at this point.

I have myoclonic jerks too and as Janet said in her post, they're really not very nice at all, but there are various meds available to help control them so it's worth mentioning to your neuro when you next see him just how much they're affecting you.

Keep a brief note of any new or worsening symptoms too - everything that you can tell your neuro helps go towards whittling down the list of other possible conditions.

It's real easy to say 'don't worry' but of course it's a lot harder to put into practice - we all know that. Unfortunately though things like 'stress' can make our symptoms worse and one of the best ways to try and combat that is distraction. 

Try to keep life as normal as possible but also rest as much as you can too. Obviously having a family makes this a lot more difficult to do but resting before you get too tired makes a huge difference.

Limboland is a very hard place to find ourselves in and quite often others find it hard to understand how we're feeling - which is one of the things which makes this site so wonderful - but it's also worth considering confiding in a family member or friend too. In my opinion the bigger support network we have the better, although this is very much personal choice.

When it comes to the LP make sure you rest up afterwards and drink caffeinated drinks - full sugar coke and coffee - and also water. These all help to avoid a monster headache afterwards.       

Let us know how you get on and remember where we are. Our listening ears are always open happy2

Debbie xx   

 

Hi Mrs Green

I can’t add anything much as Debbie has given you such sound advice but just wanted to welcome you to the site and say hi.

We do all understand how you feel being in limbo. We’ve all been there at some point and the waiting is awful. As Debbie has said try to get on with your life as normally as possible and the appointments will arrive eventually.

I had convinced myself that my tests would not show up anything but they did and here I am. I know it’s so difficult when you don’t have a definite label for what is wrong with you but you will in time.

Just hang in there,

Teresa xx