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Desperate for any help or information.

Desperate for advice please. Have been back and forwards between GP and Neurologist for six years now. My GP asked the Neurologist if it is MS, he said “possible MS” then no idea. Left in limbo. First symptoms were balance problems and vertigo, tingling and weakness in legs. I have had numerous bouts of trimegeal neuralgia (excuse spelling). Then I had a bad case of optic nueritis four years ago with all of the above symptoms. Including fatigue like nothing on earth. I have been diagnosed with chest wall spasms ( thought I was taking a heart attack) then back spasms top and bottom. Left arm tremors. Recently I had small patches of what I can only describe as numbish. When I touched them they felt as if they did not belong to me. For a few hours I had one patch on my forehead, one on my lip, my arm and a large patch onbmy calf. Every few months my symptoms come for approx two weeks then die down. I am in the middle of one just now.Dizziness, balance, Legs feel weak, tingly. Like warm water running down them, lower back pain, extreme fatigue and blurry eyes etc. I need to wait a fortnight for an appointment with Gp who will just shrug and refer me back to neurologist once again. He makes me feel like a nuisance. I have had three clear MRIs and blood tests. I have hearing loss in right ear(unexplained). And in my right eye where I had optic nueritis there is a colour change. Red dot looks brown when moved in front of eye if that makes any sense. Sorry for long post but feel very alone and confused about all this.

Sorry meant to add I am a 38 yr old female.

Hello and welcome :slight_smile:

It sounds rather like you need a referral to a different neurologist this time - it’s about the only way you are going to get a thorough investigation with no preconceptions. Make sure your GP sends you to someone with no connections to the previous neuro at a different hospital and make sure that the referral letter is supportive and doesn’t make any mention of you being a nuisance or any such thing. (You have every right to see the letter before it is sent and to ask for anything you don’t like to be reworded.)

As far as MS goes, it’s still a possibility with a clear MRI, but probably only an MS specialist would have the nerve to diagnose it. Why not use the “Near me” function on here to get the name of an MS specialist at a different hospital to the one you normally go to? It’s a bit out of date, but it’s a starting point at least. You can find it towards the top of the page, in one of the white boxes.

Good luck.

Karen x

Thank you for the feedback. It’s the neurologist that makes me feel like a pest. He talks over me and rushes the appointment. He is a motor nuerone disease specialist at a private hospital but does the occasional NHS like mine. He said my neurological tests(I think thats what their called minds a bit fuzzy) he did in his office were borderline abnormal. I will mention to my GP that I would like to see someone else but with NHS beggers can’t be choosers I guess. Thank you again.x

Make sure you use the words ‘paitent choice’ when you see your GP, it is part of the NHS consitution and a bit of a buzz word that gps will pick up on. you have the right to choose a different hospital - dont be fobbed off. dont let them grind you down - keep fighting you will get there in the end. Have a look at this link it may help you. Good luck.

Hello all im new to group and hoping someone can help i have been seeing a nerologist now for about 6 months my gp thinks i have ms however i had a mri of my brain and it was clear im so distraught i dont no what to think dont get me wrong im glad it was clear but really woudl like a definate answer to what is going on i have many of the symptoms of ms and now i am starting to loose the site in my left eye ad have developed food allergies as well as all the muscle spasms burning feet bowel problems ect now im worried they will think im making it all up although i need sticks to walk and need help to get through everyday tasks any advice would be so gratfully recieved starting to think i mite be going mad !!! many thanks x

[quote=“georgina whitaker”]

Hello all im new to group and hoping someone can help i have been seeing a nerologist now for about 6 months my gp thinks i have ms however i had a mri of my brain and it was clear im so distraught i dont no what to think dont get me wrong im glad it was clear but really woudl like a definate answer to what is going on i have many of the symptoms of ms and now i am starting to loose the site in my left eye ad have developed food allergies as well as all the muscle spasms burning feet bowel problems ect now im worried they will think im making it all up although i need sticks to walk and need help to get through everyday tasks any advice would be so gratfully recieved starting to think i mite be going mad !!! many thanks x

[/quote] Hello and welcome :slight_smile: It’s best to start your own thread so everyone reads your post, but in tge meantime, I wanted to reassure you that MRI is just one test and a clear MEI is just one piece of the puzzle - as long as your neuro is still looking for answers, you’re moving forwards. Karen x