I was just wondering with so many of us MS sufferers out there if any of you had any dealings with Medway Maritime Hospital? To keep a long boring story as short as possible I was diagnosed with MS in 1993 (or could have been 1995 my memory is not so good and it were a long time ago) following a long period of being unwell and having an MRI. I had another MRI in 1997 where again the diagnosis was confirmed by a wonderful man Professor Christopher Clough at Blackheath hospital in London. I coped well until 2011 where I seemed to experience one relapse after the other and finally in 2013 saw a Dr MS Chong Consultant Neuro. A new MRI was carried out where he confirmed ‘more than 11 periventricular white matter lesions in the brain and at least 2 areas of signal change in the upper cervical cord consistent with a diagnosis of MS’. I had paid for this MRI privately and he kindly referred me to see him at Medway Maritime Hospital and also the MS nurse team.
I was assessed for DMD therapy and started Copaxone injections in March 2014. I was very depressed and continued to experience a number of relapses and decided to stop taking Copaxone (after discussing it with my ms nurse). Unfortunately the urgent neuro appointment I was supposed to have in January 2015 never happened as sadly Dr Chong left Medway and they didn’t replace him. This meant that anyone with MS was being dealt with by a completely understaffed MS Nurse team (one nurse). She is brilliant but let’s face facts there is only so much the poor woman can do.
I was seen eventually by a locum neuro at Medway in August 2015 who looked at my last MRI from 2013 and carried out a physical examination and agreed with MS and wanted me to start DMD again. To this effect she referred me to see the new head of neuro for MS at Medway. Before agreeing to put me on the expensive DMD’s he decided to do a new MRI and also wanted me to have a lumbar puncture (as had never had one). Because I suffer with a lot of numbness and tingling in my arms and legs and a constant unbearable tingly sensation down all four limbs, especially in the evenings when relaxing he also arranged for me to have a nerve conduction study to ru out carpal tunnel and sleep clinic to rule out if my fatigue is a result of me snoring (i do sometimes).
At the time I thought great a neuro who is really covering all the stops and who will find out the best treatment for me. The doctor who carried out the nerve conduction study told me it definitely wasn’t carpal tunnel and asked why I had been referred. He thought it quite strange that a new neuro would question the MRI findings of two highly recognised neurologists in the field of MS. The lumbar puncture results came back with ‘oligoclonal bands were positive in CSF as well as in serum with far fewer bands’. He has not provided me with the results of the latest MRI but has stated that the lumbar puncture results do not confirm or deny MS - but they can be found in other conditions including auto immune diseases and often suggest a systemic inflammatory response. I must point out that when he wrote this letter he also didn’t have the report of my latest MRI.
As a result I have in effect been withdrawn from his services at Medway and also been taken off the MS Nurses books. I can phone them if I am unwell and they will decide if they NEED to see me. I am to wait another year and have another lumbar puncture,
I admit I said ok to this at the time (beginning of January) because I didn’t really understand what it all meant. I have since researched a lot of information regarding this. I have had on going chest pains for 5 months - my GP put it down to the MS hug and has prescribed me gabapentin which is helping and after going to the A&E thinking I were having a heart attack know my heart is fine following an ECG and wearing a cardio recorder for 5 days. I have also had a chest x ray which was perfect.
I continue to experience this pain, continue to get nightly leg and foot spasms and also spasms in my sides at night - so severe they wake me up and do not go for ages, I continue to have an electric shock down my spine if I put my chin on my chest. I continue to have numbness and tingles in my arms and legs and still often get the funny tingly horrible sensations in the evenings when nothing helps apart from pressing my arms or legs against something. I also continue to feel totally exhausted and in all honestly not well. But there is nowhere I can turn to for help or advice.
I guess my reason for this post, is not to just moan (although I accept I can do that very well lol) but to see if anyone else has had similar treatment recently at MMH. I am now beginning to think that because they are for the 3rd year running in special measures and obviously cannot cope with the number of people they should be treating that it is easier to take someone like me off their books - how many more people have they done this to? I have written to the MS nurse asking her for the report on my latest MRI and also the report from the nerve tests. My understanding of lumbar punctures for diagnosing MS alone are pretty hard to determine. Hence the may be may not be but surely 3 MRI’s and diagnosis from 3 other neuro’s plus my ongoing symptoms should err on the side of caution. And further were this after 23 years a mis diagnosis of some other autoimmune disease would one not expect him to refer me to a specialist to consider what it could be before any damange done is unchangeable or becomes life changing more than things are now.
I guess because of how unwell I continue to feel that my fear is this will only get worse and now I have no one in my corner. My GP is wonderful but not an expert.
Anyways any comments or input or anyone who has had similar experiences recently with MMH I would love to hear from you.