Last reply 2 months ago
Going crazy

I need some advice please .i have no diagnosis.. just tests tests tests and more tests . So far they have said chronic fatigue syndrome and fibromyalgia. They can’t ecplain a weakness on my right hand side dropping stuff and I’m embarrassed to say dribbling from the right side of my mouth . They checked for a stroke but nothing showing.
My tired is tired before I’ve woken up and I’m like that 24 7 . I have a weakness on my right hand side. At night when I’m in bed my hands and arms go numb. I have the strangest pins and needles. I drop things…… I’m hoping that everything can be given another explanation but in a conversation with a community OT it was voiced about it being MS , it was something I had thought but brushed aside but here I am anyway.

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2 months ago

Hi and welcome!

It’s frustrating to not have an explanation to your symptoms although there could be a hundred and one reasons why you are experiencing the above. Have you had a MRI scheduled? This will normally indicate whether there are any ‘lesions’ in your brain to indicate MS. If you haven’t been referred for one, I’d ask to be referred.

Keep us updated and always here if you need a chat. Limboland isn’t the nicest place to be.


2 months ago


Just from reading the first few lines of your post it sounds all too familiar with my own symptoms. My diagnosis was pretty quick in comparison to others and yourself, maybe a second opinion might help?.

2 months ago

Hi @womble_barker , you’re most welcome to join us.

Limboland is a terrible place as you just can’t see a way forward. So, a definitive diagnosis is always craved to allow you to move on.

MS has some specific criteria that have to be seen before an MS diagnosis can be given. These are described here :-

So, you can understand the comment above about MRI scans………

2 months ago

Hi @womble_barker
Welcome to the club!
As mentioned before by @lightning87 your in what we all know as LIMBO LAND.
Its horrible.
Keep chipping away at the med bodlings but be nice to them, charm works way better than moaning if you get my drift.
This is a bit off a a storm but the waters will run smoother eventually.

2 months ago

I was reading your post, and I understand your frustration. In 2001 I LOST the sight in my right eye over night. I did get my sight back. This started 7 years of tests and more…in 2008. The final diagnosis. I had all the symptoms you are having. Have you had a spinal tap??? MRI. If not. Insist on them I am happy to say I am in remission at this time. But as you know this can change at any time. Watch your diet. If you smoke. Try to quit. Walk a lot if possible. Good luck😇


Note: this was started as a new topic in error, so it has been added here where it was intended to go – Admin (stumbler)

2 months ago

Not sure if it’s related or not.. when I lay down at night my arms go numb I’ve just had a nerve conduction test but it was only from the elbow down and everything is fine , so that’s ruled out carpel tunnel not sure on spelling sorry. . I live alone and am in the process of sorting out a personal assessment via direct payments. I feel like I’m being crushed sometimes but then it goes away and I think I’m going crazy. There is no one to tell me if I’m changing . Some days I just want to sit and cry . I’m not making this up… right now my left leg has pins and needles for no reason.
Yes a MRI has been requested , re a lumber puncture … mmmm I had two when I had meningitis in 1997 so I fear them

2 months ago

My hands and legs go numb very easily depending on the position I’m in. It just makes the pins and needles worse and feel like my arms gone to sleep. I also kept passing my tests and the nerve tests. My neuro had only done a brain MRI though and without contrast, but a few days later I ended up in the hospital where they included my spine in the MRI and did it with and without contrast, as well as, a lumbar puncture so it’s good you requested them. I also don’t like MRIs and they give me anxiety so my doctors always give me Ativan or Valium beforehand which seems to help. I’m especially grateful I had Ativan this last time because the machine was even smaller than the regular ones so I felt extremely claustrophobic. Good luck!

2 months ago

Well Wimbledon,

The key to an MS diag is thru a neurologist. Your PCP can refer one. I started symptoms in 1991 (early bout of ON in 1978, then total remission for 13 years). PCP sent me to various specialists for symptoms until a neurologist. MRI and spinal tap led to diagnosis. One would think that a quicker diag in 2019 as compared to 1991 . We have to be our own advocate due to the insurance companies. Talk to your PCP and demand referral. Switch PCP if needed.

2 months ago

I’m in the uk, where is everybody from

2 months ago

@womble_barker , wow, that question could get a few thousand responses. 😯

Anyway, have a look at our map of member’s locations,

Unfortunately, this map is only as good as the information provided by our members. We need all members to ensure that location information is added to their Forum profile.

You can plot yourself by selecting the “Hot air balloon” on the right side of the map.

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