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In Limboland :(

Hi I’m Sarah, 23 and I’m currently on a 7 week wait to see a neurologist after my doctor referred me due to a very long list of symptoms that have developed over the last 3-4 years.

At the moment it’s the extreme exhaustion and fatigue that is really getting to me. Not to mention the muscle weakness which makes it impossible to bath on my own, I need aid in going upstairs and am now unable to work.

I put a lot of the symptoms over the years down to stress and depression that I was going through. After ending an unhealthy relationship, escaping a job with terrible stress I have finally found a stable period. It’s since then and coming off citalopram that my symptoms have progressively got worse.

I know that the people I currently work with do not believe I am suffering the way I am and one even voiced her opinion. I just am stuck in this limbo where I have no real grounding until I reach diagnosis.

There is no way to get a sooner appointment and facing the idea of work in any means just stresses me out even more.

How long did any of you take to get diagnosed? Did you find out right away? What can I expect at the neurologist?

Thanks :slight_smile:

Hi, sorry to hear you are having such an awful time. As you read these posts you will see there are many of us in the same situation, Limbo land is not a great place to be. I wish i could say yes, they’ll do this test and that test and then you’ll know for certain, but, unfortunately it’s not always that easy. Some peoples tests are very clear and difinitive and some are inclonclusive and need a lot of further investigation. But at least you are on the road to further investigation and once you;ve seen a neurologist i hope you’ll feel a bit more positive. i was very impatient at first and let myself get very frustrated and angry about the time it’s taking ro get some kind of dx but over time i have learned to accept that neuro problems can take a long time to diagnose and i’m just going with the flow now. i understand how you feel about the difficulties at work and not having something definate to tell people. I have been suffering quite sevre symptoms since May and have had 2 “attacks” of some sort in that time, however looking back I had been suffering from some of the symptoms for a number of years but to a lesser degree. This site is great for reassurance and questions and making friends who understand. i certainly feel less “alone” now, just being in touch with people who understand really helps. I really hope things move forward for you and you don’t have to wait too long for answers.in the meantime stick with us guys on here, i have learnt so much from others here. take care and good luck xxx

I’m just trying to stay as optimistic as possible. I’m lucky enough to have a dr who is prepared to get answers for me. She only referred me to neuro in case it is something like MS if it’s not then I’ll get diagnosed with ME but this is the only site where I’ve found comfort in limboland.

I have a very understanding fiance, family and friends, but it’s not quite the same.

Thanks so much and I’ll continue in the forum as it’s the only one like it I’ve seen after much searching on the net. xx

Hi, my daughter was diagnosed very quickly. She went to doc with a funny feeling leg in Feb and was told she had trapped nerve. We never questioned this as it seemed entirely plausible. Then in early May had a numb arm and hand, back to doc who said he would refer her to neurologist just to be on safe side, I googled her symptoms and ms was the one that fit, but I tried to convince myself she was too young. A couple of weeks later before appointment came through she took very unwell, was rushed into hospital and when she eventually stopped being sick which took a week she got into and diagnosis a few days later. So from first real symptom to diagnosis it was probably about 5 weeks. Limbo must be he’ll as I know those 5 weeks were very worrying for us, diagnosis can bring some relief because you know you are not going mad and you finally know what is wrong and can start treatment. Good luck and let us know how it goes. Linda x

I’ve been given every blood test under the sun at my GP’s in the last 3 years. My doc said she was doing it to be safe, but pretty much all my symptoms can be explained by MS or ME as they both are very similiar.

I’m staying strong at the moment, but just taking one day at a time as there is literally nothing else I can do…

Thanks for all the support and I’ll let you know how things get on xx