i have finaly got a diagnosis today i do not have MS i have Idiopathic intercrainal Hypertenshion.
i only wrighting this message to let people know what condition they may have if not MS
i was having all the symptoms for MS including the hug i had an MRI all clear LP was clear but my presure was 23 which is in the gray area of being high but as the fluid was removed my headache and pain whent away so the nuro has today given me this diagnosis.
Thank you to everyone on the fourm you have all been very suportive and helpfull.
Hi, could you tell me what symptoms you have had?
Just wondering as I recently have had vision problems in my left eye with swelling and drooping. Also the last 4-5 days my ears are now buzzing constantly and I feel like I have brain freeze in the back of my head. Severe fatigue, pins and needles, calf muscle cramp… my face is quite noticeably different on one side and the doctors are not listening…
I just had an mri but no results yet, never had a lumbar puncture since symptoms initially started over a year ago.
Fed up of being off sick, fed up of feeling ill and wondering if this may be the problem?
Hi, you and I share one of the words in your diagnosis ie idiopathic…were you told what that means?
My neuro diagnosed me with idiopathic spastic paraparesis.
Then he told me the meaning of idiopathicand he kind of laughed when he said it..............it meanswe dont bloody know`…yep, those are the words he used.
I stick around here as many folk have asked me to.
luv Pollx
Would also be interested to know your symptoms x
Shezza - have you looked at Myasthenia Gravis (MG)? I think many assume neuro problems = MS and normal MRI = no neurological illness, but there are a lot of other conditions with symptoms that are similar to MS that don’t necessarily show on an MRI. The comments you made about your eye / face seem ‘MG like’. MG doesn’t show on an MRI scan or LP and it’s quite rare so not often considered by doctors. I was told my MRI’s were clear - but then asked to attend urgently for a follow up. I almost didn’t go thinking that a clear MRI etc means no problems but it transpires that generalised MG is most likely what I have. My neuro seems very confident of his diagnosis based on my physical examination, symptoms and history but I’m having more tests to confirm (acetylecholine receptor antibodies, MuSK antibodies, EMG, SFEMG and chest CT scan).
I would add that MG, like MS has relapses and remissions.
Hi
Thank for the reply. I think my neuro ruled that out with negative acetylcholine test.
As for the mri, it came back with some swelling/inflammation over the left optic nerve but they are not certain what… I haven’t seen the report or spoken to the consultant who requested it. Still waiting on lumbar puncture and vep.
I have been given a 2 week course of steroids and increased gabapentin 300mg per week. The neuro (mr useless… seing him for over a year and no further forward) now says I have a migraine… he is not sure why but did say sometimes that is how ms patients present initially and that I am grumbling along… now I know it may be a migraine but I have had no let up in this symptoms since middle of January and I don’t have a headache nor have I ever been a headache sufferer. I have been off work since January and I am fed up with the length of time to follow me up. This is the 2nd episode 
I feel so unwell, the steroids don’t seem to be helping (only 50mg per day) and I don’t have a follow up til may. I cannot function I feel like someone is sitting on my chest and finding I have shortness of breathe and yesterday I had a really bad tremor in my hands. Am I going crazy? Aside from constantly nagging his secretary I don’t know what else I should do. It’s ridiculous all I want to do is go back to work.
O just wanted to add that my neuro (not the one that requested the mri) says my optic nerve is not related to the facial problems?? Or my other symptoms… would this be the cae? Anyway I think I amggoing to pals on Monday.
It sounds like you have other stuff going on but, just to clarify, a negative acetylcholine test doesn’t rule out MG.
Hi Shezza,
I also have some wild and frightening symptoms at time’s, and some stay and get worse and other symptoms pass on. And my Nuero has said it could be to do with silent migraine’s too. I don’t suffer from headache’s either, its just the Aura of the migraine. He is still seeing me every 6 months for a review, which I am glad for. The permanent damage seems to be visual, hearing and balance and weakness in my limbs. I also have terrieble nightmare’s, not sure if this means anything. I hope you feel better soon xx
Hi,
symtoms have been constant since beginning of January for me this time. Last episode was in November 2012 and I was off sick for 9 weeks. Never had a problem before then. I have read aura normally lasts 20minutes? So why has mine lasted 5-6weeks? Is that normal? Then there is a discrepancy with the left optic nerve.
Left eye visual disturbance with slight colour change and pain behind the eye, droopy and swollen left face with numbness which is now extended inside my mouth and lips (like I have been to the dentist), fatigue, joint and muscle ache/pain, can’t feel my hands in the morning for ages, constant high pitch noise in both ears which appeared appx 3 weeks ago. im tippy and off balance and generally feel unwell. Shortness of breath is the most recent thing and I had a d dimer test which was really high but lungs were clear.
spoke to the consultant yesterday over the phone and aside from completely belittling me, he seems to think that the steroids should have helped. I told him that they haven’t and that I still feel really ill. he tol me my gp should manage medications. I said to him surely he should be monitoring medication himself especially as my symptoms have not been relieved by anything for about 5-6 weeks…
i feel like I am going round in circles and I dont know what to do next. He then says well if your gp is not happy with the wait on hospital appointments then I would be really pleased for you if he refers you to someone else.
basically I understood this to be: you have a migraine, take steroids and sit on the shelf… oh and I really could do without you on my patient list, go and see someone else. To be honest so far he has failed me.