The following post on Limboland MS Society message board, is the exact same scenario I am getting at. Lesions are NOT an indication of MS, this post proves it as Lumber Puncture clear.
Hi everyone,
Sorry for the long post but I am hoping someone may be able to help with any ideas as to how I proceed with trying to get a diagnosis.
I was given a probable MS diagnosis last year (80% definite) by a MS specialist neuro after a MRI scan showed multiple lesions in my brain (in brainstem, periventricular and sub-cortical). I had been having neuro symptoms for about a year before this - mainly balance problems, difficulty walking and neuro pain (burning, prickling etc.).
I was persuaded months later by my neuro to have a LP done to complete the diagnosis but this came back normal. The probable ms diagnosis was then withdrawn and I am now in limboland. My neuro symptoms continue and I no longer have the support of my ms nurse. I have felt very alone and at times total despair at being in this situation. However, I now know I am not alone after reading other posts on this site.
My life has changed completely since the neuro problems began. I have run my own business for over 10 years and employ 20 people. I have appointed a manager now as I am unable to be on site full time any more and wonder how much longer I can keep going with things as they are. I am married with 4 children but feel a real burden to them all now.
It has been a complete nightmare over the past 18 months. First to be told you have probable MS, given a MS nurse etc. and then to have it withdrawn and be put into limboland with no help/support. My neuro (who is a MS specialist) says that it is very unlikely to be MS after having a normal LP result. However, he has contradicted himself several times about my results. Everything changed after the normal LP.
When he gave me the probable MS diagnosis (before the LP) he said in a letter to my G.P. that 'the area of high signal seen within the pons is highly likely to be the cause of her significant problems with her limbs'. I have a copy of the neuro-radiologists report regarding my brain lesions which states that 'these high T2 foci represent areas of myelin damage'. However, my neuro now says that he thinks the 'lesion' in my brainstem is artefact. I still have numerous other lesions mainly in the periventricular and sub-cortical areas. However, he thinks that these do not match my symptoms. My legs feel weak, heavy and stiff. He says that this should indicate lesion(s) in my cervical spine but this was clear on the MRI last year. His letter to my G.P. stated that 'there are certainly some abnormal signs on examination'. I have brisk reflexes, upgoing plantars, ankle clonus and increased tone in my legs. I have also had an abnormal result from my magnetic evoked potential tests which showed weak and delayed reponses in my motor nerves to my arms and especially my legs indicating a C.N.S problem.
My neuro has now suggested that I see a neuropsychiatrist as I am stressed about the lack of diagnosis. I cannot believe that he thinks my problems may be functional!
I have declined the offer to see the neuropsychiatrist and I am due to see my neuro again next month. However, I have lost all confidence in him and do not think I can face seeing him again. My G.P. says that he will not refer me to another neuro as I am seeing a MS specialist neuro already.
Thank you for taking the time to read such a long post. I would appreciate any thoughts from anyone who may be able to help.
Thank you:)
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