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How do you cope being told your symptoms are medically unexplained.....?????

Hi Everyone, Has anyone here ever been told that there symptoms/illness they have are just “Medically unexplained”. I personally have had ms like symptoms since last june/july time but thinking back further i had very odd symptomss previous to that and past history of glandular fever and bell’s palsy. Ive had an mri scan which shows two small lesions ( i believe i only had mri of head only and no idea where abouts in the brain these lesions are). I have since had a lumbar puncture and am awiting yhe results. I guess what im worried about is the if the lp comes back normal, my neuro will just say that its not ms and its just “medically unexplained” and discharge me. These symptoms/feelings etc are affecting my day to day life (as im sure you all know too well). I want to be prepared for neuro maybe saying he does not know whats wrong with me. Should I ask for another mri scan of the brain and dpine etc or other tests or just accept I may never know. Sorry to ramble on and for any spelling mistakes etc. Any advice or thoughts would be greatfully received. xxx

His Anon

It’s a difficult question to answer and everyone will handle things in a different way.

The options are:

  1. the neuro may do as you say and say LP is fine lesions in MRI are normal age related - discharge. In this scenario perhaps a visit to the GP to say the neurologist has ruled out neuro issues what else could this be and what help can I get for my symptoms.

  2. the neuro feels the fndings are inconclusive at this point so wants to wait and see - this can be hard to accept but unfortunately neurology is a mind field and sometimes time is the thing that tells. Theres nothing stopping you from asking for help to deal with the symptoms though. And the neuro obviously believes something is going on and isn’t dismissing you.

  3. A diagnosis of CIS/ probable/possible MS - there may still be a wait and see approach here as to get DMD’s (drugs to reduce relapses if you are relapsing remitting mS you have to meet very specific criteria - google mcDonald Criteria MS)

  4. Something else.

My symptoms officially started Oct 2011 though I think I had signs of something not right at least 6-12months before. My 1st MRI showed non-specific lesions as did the second. I changed neuros in the middle (as the first was terrible) and have held off having a LP or EVP as at that point my symptoms were getting better and positive results wouldn’t have given me DMD’s. So I’m following the wait and see approach. I’m due to have another neuro review now hopefully in the next few months. If something really obvious happens then I will push for the tests but I guess in my case I don’t want a label of possible MS if there’s a chance it’s not, if I don’t get meds to delay relapses, and if I get label that affects my mortgage, driving and many other things. I’m not saying thats what you should do in a similar situation, it’s only something you can decide.

Good luck - not knowing can be very frustrating and difficult.

Reemz

X

It’s possible to get lots of help without a diagnosis, but not knowing wtf is going on is a very difficult thing to get one’s head round :frowning:

If I were you, I would go to the neuro appointment prepared to understand the answer to this question: “Exactly how do I not satisfy the McDonald criteria?”

That means that you need to fully understand the criteria which may mean learning lots of new things. It’s perfectly possible though, and you can always ask for help on here with any of the bits that are unclear.

Put this into your internet browser to get the abstract (summary) and then click on “get pdf” to get the full paper: http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/abstract

The next question to ask once the neuro has properly answered the first one is probably, “So what else might it be?”

Do take someone with you - it is hard to remember everything after these appointments so an extra pair of eyes and ears can be invaluable. They can also help you to be firm and get proper answers.

Karen x

hello,

yes am in total limbo ,have been there,and still beleiving in my own lnoklege of my body,that i live with ms symotoms,and battle on,with the hope that one day,it will show,as it does on my mri,hang on to your own beleif of your body,it is you suffering it afterall,wishing you good future outcomes.

love boz xxx

hi,

i have been dx with medically unexplained symptoms and i know in my head that what is happening to me is very real. i have great support from my hubby and gp and i have realised that i have got to wait and be patient for a dx.

i do get good support from this forum and i know i am not alone in this battle with my symptoms.

good luck with your appointment

lorraine x

Hi, maybe my experience will be helpful…cos Ive done the rounds for a few years.

Problems began when I was 45…15 years ago.

Firstly I noticed a heavy left leg, then foot drop and falls…lots of them.

Next came spasms…and stiff legs…

Saw neuro no 1, who did MRIs, LP, EMG, VEP and bloods…all came back normal.

Neuro shook his head and said it looked like PPMS…but couldnt be sure. It worsened quite quickly.

I saw other neuros every 6 months. I got a 95% dx of PPMS…for 7 years.

Then saw a new neuro, who discounted MS and said I had HSP…hereditary spastic paraparesis…main symptoms were loss of mobility and bladder,bowel problems, spasms and spasticity, plus severe fatigue. No cure, treatment same as for MS.

My dx was swapped back to PPMS, then to SP.

I have not been discharged and tests have been repeated, still coming back normal.

They say if I did have PPMS, that i`d be in a worse state than i am after all this time.

Hope this helps somone.

I`m happy to answer any questions you may have.

luv Pollx

Hi

I can relate to your situation completley, I have been told that despite 4-5 lesions on my MRI my case is medically unexplained. I totally agree that you know your own body and you know when something isnt right, even my partner will agree that I am not right. I have been discharged without even an appointment to explain my scans etc.

I continue to be amazed by the amount of people on here who have been told medically unexplained but suffer clear neuro symptoms.

Good luck going for your lp results, stay mindful of the questions you need to ask.

Best wishes

Rachel x

Hiya I am new and in similar situation. I had to go to docs today as got very painful neck and shoulder. Since yesterday eve. Like i have been in an accident. The doc said the muscles are in spasm and gave me naproxen i am already on nortriptyline. My last neuro appt she said she couldnt explain other head leg and body spasms. She is going to refer me to a movement specialist . It’s worrying to be in the ‘unexplained’ place but just keep going if you are not happy with things. I have had to go private but i am glad i have because now she wants to do more blood tests too . If you feel you haven’t been listened to then persevere you know in yourself how you feel and what your body is doing. Best wishes

I’ve had a probable m.s diagnosis for 3 years now. All of my symptoms and the relapses indicate m.s (plus an abnormal neurological examination which supported a upper motor neuron disease diagnosis.) However I have had 2 normal mri’s (without contrast.) I’m severely needle phobic so I’ve not had a lumbar puncture and my neurologist is fine with that not being carried out. She said that my treatment will not change despite what it says. It’s taken a while but I’m now going to be given physio and gabapentin for neuropathic pain. I’m also going to be referred to an m.s nurse and a m.s specialist. This was after a wait and see approach.

After reading many storys on here i understand there are lots of people in the same situation all having strange symptoms my husband being one of those people.You know yourself you are ill , you know your own body better than anyone its not that they dont think that there is anything wrong, its just that there are so many different brain disorders and i think doctors hold back for fear of wrong dx and fear of being sued.I hope you get some answers soon xx julie