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Wits end with pain-no diagnosis

Hi everyone. I’m new here so hopefully you’ll bare with! I’m am only 18 years old and could do with some support. Since Jan 13 my body has collapsed and gave up on me and I’m struggling to even go about my day to day jobs. I have every symptom on the check list for MS and have had every test under the sun and all have come back clear; has anyone been diagnosed before without anything back on tests? I’m perminatley fatigued, my legs tingle and burn every second of everyday and I get shooting pains throughout the day. I can no longer stand for more than 3 mins without feeling my legs will give under me and I can no longer even climb the stairs without severe struggle. Any thoughts or help? Just need to speak to someone who knows what it feels like to have this nagging pain and discomfort every single day :frowning: E xx

Oh dear, I am sorry to read of someone so young, who is suffering so much.

I dont know if my own expereince will help or not, but here goes;

Until the age of 45, I was fit healthy and a very busy working mum.

Then I began falling, tripping up over nothing. I also began tiring earlier and earlier in the day.

I tried to ignore my problems, but family urged me to get it checked out. I also had painful spasms in my arms and bladder and bowel accidents.

I saw a neuro, who ordered MRIs, LP, EMG, VEP and lots of blood tests. Nothing, absolutely nothing came back suggesting what was wrong.

Within 2 years, I was using a wheelchair part-time. I had to retire from work, aged 47. I was given a 95% sure diagnosis of PPMS, as my clinical presentation fitted that. That was in 2003. I`ve now been a full time wheelie user for 9 years. I am 60 now.

In 2010, a different neuro said i didnt have MS, but HSP. ie hereditary spastic paraplegia. We could find no family history of HSP. That diagnosis was discounted a year later and PPMS was back in the frame!

Further MRIs, another EMG and LP were done…all came back clear.

Last year MS was finally discounted for definite and my current diagnosis is;

spastic paraparesis/cause unknown.

And that`s my story!

I live life the best I can, need lots of help, but still feel life is worth living, whatever struggles I encounter. I take many meds to help with the pains etc.

pollxx

Hello there! I would just like to say welcome to the forum!

Your symptoms could be down to anything at the moment so you will most likely not get a diagnosis until they are really sure what it is. This is extremely frustrating and scary i know but there are many illnesses/problems that can have simular symptoms to ms and usually ms will not be diagnosed without evidence.

Am i correct in thinking you have had clear mri? have you had lumber puncture?

Ms can be hard to diagnose and unfortunately on here this is commonly known as ‘limboland!’

Its very hard being in limboland so it is very important if you have any new symptoms to tell your neurologist (presuming you have seen one?) as it is all important information for you getting closer to a diagnosis. If you have new significant symptoms then they will usually repeat tests again to see if they can fing evidence on the mri.

Good luck

Teresa.x

hello E

maybe your gp will prescribe you something to help with the pain.

there is also a meditation course called breathworks and it helps people to manage their pain.(google breathworks, mindfulness meditation)

i wish you all the best in getting a diagnosis, its a cruel disease invading a healthy young woman like you.

i’m afraid the gp is your best bet until you are diagnosed.

rest often because your poor body doesnt know whats hit it

carole x

also there’s a saying “this also will pass”

seems to sum it up

Hello E Your GP should be able to give you some form of pain relief even if your not diagnosed with anything. It’s really scary when you feel like your body has been kidnapped by aliens almost over night and the one your left with is so messed up. From reading posts on here it would appear it can take some time to get any results to show up on tests. It really is a waiting game and with the symptoms being so like a lot of other illnesses its hard to get a diagnosis. I’m undiagnosed and 3 months ago I was very active and fit. Like you I have had all the symptoms come on very suddenly and am really incapacitated. I have had a lot of tests and scans done already all negative for ms lesions and am awaiting the results of the last lot. Hopefully getting the pain under control will help a bit. Until you can get tests repeated. Take care x