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Not sure how to feel!!!

I finally got the results of my lumbar puncture today, all clear and normal! I’m not sure how to feel, to be honest I know its sounds daft but I’m disappointed.

I’ve suffered for the past 18 months with weak legs ranging from just finished a hard training session feeling to not able to stand up for a few days, all this has been accompanied with numb arms, internal buzzing feeling, constant twitching and way to many other symptoms to bore you with on here. So when my MRI (done in the first few weeks of symptoms) was normal I was told could not rule out MS at that stage. The neurologist has also said it may be Periodic Paralysis but on checking online it doesn’t quiet fit it…

So back to not knowing how to feel,I suppose I was hoping that they would find something in it so that I could finally find out what was wrong with me. Now I have to wait and see, hopefully more test and if I’m lucky a diagnosis eventually, I suppose I should be gratefull that my neuro thinks its of organic origin so he will continue to look.

Sorry for the moan, I know there are alot of people on here much worse than me and waiting alot longer, but it is such a strange feeling being gutted at a normal result :frowning:

Thanks for taking hte time to read this and the support you have all given me over he last 18 months

Deb

Hi Deb sometimes with MS the test are too early to show much.

Have you thought of M.E. or Fibromyalgia, which have very very similar symptoms to MS, and can be just as delibitating to be honest although allegedly they are not progressive like MS, they can wreak havoc in their own right.

Check out the web site called A Hummingbirds Guide to Myalgic Encephalomyelitis. It also shows you just how close the symptoms are to MS, but with M.E. and Fibromyalgia especially there would be nothing showing on the test, although with M.E. there could well be something but not demylinating.

Just to make you feel better, I have had lots of positive stuff on my tests but still no diagnosis.

It’s not at all daft to be disappointed - we all need answers after all, and finding out that you still have to keep looking can only be a disappointment

It’s great that your neuro is supporting you. Just one thing: if at some stage your neuro decides that he can’t help you any more, please make sure that he recommends a new area / consultant (e.g. genetics or metabolic disorders). It will hopefully speed up the next step.

Good luck with your search. I hope you get some progress very soon.

Karen x

hi deb

i know exactly how you feel and its very weird for anyone to understand the reasons why you need a positive result.

its just that whatever is happening to our bodies is happening and its just nice to have a name (that fits) for it.

the medics dont help when they give people the impression that its all in their head, i was told this again last week and now have to wait for another neuro appt which i didnt really want. im so afraid that i will get another negative that i wanted to put off seeing a neuro again.

there is no easy answers except for taking the support this site has to offer, its really helped me massively to know im not the only one and that there are so many people in the same position.

hope you get some answers soon.

mandy xxxxxxxxxxxxxxxxxxxxxxxxx

Hi Deb

Please don’t feel strange about saying you’re ‘gutted’ that the tests were normal. This is perfectly understandable and there are many of us on here who have felt the same after tests.

I’ve been in Limboland now for nearly 5 years, My problems are mostly with my legs (can’t walk far) and pain. A few months ago I had a flare-up which has left me with numbness/weakness in my left leg, ankle, foot, toes etc. plus a dropped foot, so walking is now harder.

We know our lives have changed drastically in terms of what we are able to do & how we feel, and therefore we just want to know the reason why so that we can come to terms with it and get the right support to manage things. Being in Limbo feels like we have just been left to struggle on ourselves.

This site is great & actually is the place where I have got the most support - more than from any doc. So, please do keep posting and share how you feel - we’re here for each other.

Take good care

Bren x

Hi,

I’ve just read the replies from M Turner, Karen, Mandy and Bren and would like to thank you all for your understanding and for taking the time to reply. I honestly don’t know how I would have coped with all you lovely people to talk too. Plus just reading other peoples stories has help alot, family and friends try ot understand and help but they just can’t get their head around how it actually feels. Especially when I’m having a “good” day and manage to look and act normal even though I feel unsteady or in pain. I suppose if they can’t see it, its not there! but thank goodnes everyone on here knows what its like, so here’s a very big thank you to you all xxxxxxxx

Hi,

I’ve just read the replies from M Turner, Karen, Mandy and Bren and would like to thank you all for your understanding and for taking the time to reply. I honestly don’t know how I would have coped with all you lovely people to talk too. Plus just reading other peoples stories has help alot, family and friends try ot understand and help but they just can’t get their head around how it actually feels. Especially when I’m having a “good” day and manage to look and act normal even though I feel unsteady or in pain. I suppose if they can’t see it, its not there! but thank goodnes everyone on here knows what its like, so here’s a very big thank you to you all xxxxxxxx