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Not getting anywhere !

Hi everyone.

Hope you don’t mind me having a moan but I feel as if I’m not getting anywhere with diagnosis.

I’ve been back to see my neuro who told me initially I had benign MS which he diagnosed on clinical exam and history only. When I went back to see him after my brain MRI he was about to discharge me as the scan was ok. When I told him that he had given me a diagnosis of benign MS on my previous visit he said well it can’t be as the MRI is clear.

I had been to see my own GP that week who did a neuro exam and found a positive plantar reflex in my foot and gave me a letter confirming this to take with me. My neuro did an examination on me and my partner then asked him about a cervical spine MRI which he has referred me for and I’m waiting an appointment but only after asking for it to be done. My neuro said that an LP would only give an extra 1% chance of diagnosing MS so it was mutually agreed that we would go for the spinal MRI.

I fell at the weekend and ended up in casualty as I lost a lot of sensation in my leg and couldn’t weight bear. All the clinical abnormalities noted by three other doctors apart from my own consultant were also seen by the casualty doctor. This doctor had a chat with the neuro on call who said from looking at the notes of my own neuro that he highly suspected MS despite the normal MRI.

Anyway (moan soon over) my GP received a letter from my neuro-consultant not stating this and accusing me of keeping my arm stiff when doing a reflex test. None of the other doctors who examined me before have ever found this and have noted abnormalities on examination. He seems to say one thing in a consultation and writes something completely different to my GP. The neuro on call seemed to think my consultant highly suspected MS from his notes but when he has written to my GP he contradicts this and almost dismisses it. My partner who is also a doctor was in on the consultation so I know exactly what my consultant has told me. It’s so difficult as my GP is not happy to refer me to another neurologist even though my consultant is only in the hospital on an ad hoc basis for catch -up clinics and not a full time neuro.

Sorry for the rant but I’m thankful to have you all to listen to me. xx

Well, a rant would be reasonable behaviour after that. Actually, your account came over very reasonable.

Is there another hospital within reach? The “Near me” button a the top may give the name of another neuro.

DEFINITELY time for a second opinion. What a farce - right from the beginning (benign MS is only diagnosable after at least 10 years as it refers to how MS has affected someone over that time)!

You need to see a proper MS specialist, not some temporary fill in.

Get assertive with your GP. If he/she still won’t play ball, then get a new GP! Seriously.

Karen x

Hi Jon,

Thanks for your reply. The problem I have is that all the hospitals in my area are led by the same hospital trust and it would have to be my GP who would refer me. He has written to the neuro department to request an expediting of my MRI appointment citing further symptoms though I expect it will end up with the same consultant as I am already under the care of a specified doctor.

As far as I am aware the GP’s are not allowed to refer out of area if a particular medical service can be accessed within the patient’s own trust area. Thanks for your help x

Hi Karen !

I like your response !! The sad thing is is that my partner used to be a GP (and a good , caring one from what patients tell me) but he has now moved on to other things. My GP is very good to be honest in most ways but I think it’s this professional etiquette of not wanting to 'step on anyone’s toes ! However, it still doesn’t help my cause. I think I will end up having to go private in the end . Thanks so much xx

Hi !

The saga goes on at my local neuro department. Not sure if anyone remembers but I was originally told that I had Benign MS by my consultant (ad hoc consultant covering initiative waiting list clinics only ) and an offer of referral to a MS specialist colleague only for him to retract the diagnosis on the basis of my normal brain MRI some weeks later. He did eventually agree to a cervical spine MRI only after I suggested it and am waiting for this. Before this he was about to discharge me placing the emphasis on my migraine. It was only with persistence from my doctor husband and a letter from my GP explaining abnormalities that he found on clinical exam that he he didn’t do this. Since then I have more weakness and numbness in the lower part of one leg and had complete weakness of the other some time ago which lasted a week.

I thought it would be helpful if I spoke to the MS Nurse at the department to see if she could offer some sort of support/advice etc as I am so worried about these new and ongoing problems. Instead of speaking with me personally she got her secretary to phone me back to say that she couldn’t speak to me because my MRI was normal and I should wait for my cervical spine MRI then I should contact my (ad hoc) neuro who isn’t at the hospital regularly and who doesn’t have a team working with him either. I couldn’t believe that a qualified healthcare professional could be so obstructive and dismissive having been in a similar role myself. It just makes the fight even harder and the obstructive nature of the department is so unhelpful. I don’t know where to turn to get the right sort of help and support - any ideas.? Feel a bit deflated today as I’m in limbo again - one minute given a diagnosis but weeks later told all is OK but still with symptoms and abnormal clinical exam seen by four other doctors. My GP is reluctant to refer me to someone else and we can’t request a referral to another consultant outside the area. Thanks for listening.

I know exactly how you feel, sadly. And it doesnt help either.

I had a clear MRI so after being told I was highly likely to have MS they scan was clear and that was that. My GP has sent me back to hospital ona further 4 occasions with new symptoms which he clearly notes down in my records every time they appear. I had an MRI scan in Feb 2010 and on every admission I am told I cant have another as I’ve already had a clear one!!!

My work are in a dilemma as I’m not fit for my job and they want to pension me off but need to know if the condition is permanent and really could do with a dx. But all I have is a report from a neuro (not my own one work paid to see me) that I am highly likely to deteriorate over time, and am unlikely to hold down a job in the manner I am used to and will have repeated absences and significant times of rest, and am unlikely to recover.

But no-one tells me what it is. Prognosis but no diagnosis!! What??

Also my neuro sent reports to my work saying on examination I am normal, yet this is clearly not the case and never has been, when my GP has read some of his reports about me he has been surprised as on the same day he has seen these neurological problems, sent me to hospital and yet the neuro cant see them despite every other person who admits me at A&E seeing them, the admissions staff seeing them, my family seeing them, me feeling them - the neuro is the only person who cant!!

Sorry turned your post into a rant of my own - but I wanted to say that you are not alone and I also feel the same as you. I hope you have some luck soon and get some sort of sense and acknowledgement from the neuro, I’m sure you can get another GP and ask for a referral to someone else. Good luck and thinking of you xxxxxxx

Pipiscat: why can’t you go out of the area? Lots of people do you know. It certainly sounds like you need to bypass the current team! Alternatively, have you thought about getting a private consultation? It will cost somewhere in the region of £150-200, but you should (hopefully!) get a proper clinical exam and time to discuss things. Whatever you do, make sure that the GP does a supportive referral letter - consultants sometimes give a lot of (too much!) weight to it.

Karen x

Hi Pipiscat

The first neurologist I saw was hopeless. He dismissed my MRI scan which showed loads of lesions and just said to come back after six months when hopefully everything would be better. I found out afterwards he wasn’t a consultant but a doctor with an interest in neurology.

After looking on here and asking gps where I work they recommended a different neurologist who works for a different PCT. He’s on here as a MS specialist. I had no problems getting a referral for a second opinion. I then had a lumbar puncture and received a diagnosis about 5 months after seeing him.

I could have quite easily given up after the first neurologist but my husband insisted on getting a second opinion as he could see how bad things were getting. As Karen says, try looking on here for a specialist and ask for a referral to them. Nothing to lose after all!

Good luck and don’t give up

Lynne x

Hi again !

Thank you to everyone who gave me brilliant advice and understands my problem -it really does help not to feel alone with my problem. It’s not nice that we should have to fight for everything.

Apparently the reason it’s not possible to get another referral out of area is that if a particular service is offered in my own area then the health board sees that as adequate and no need to go to another county. I am based the Welsh side of the Severn Bridge and can’t be referred for care in England which is a shame as it seems easier to get referred to MS specialists. There are MS neuros in Wales but still it doesn’t seem possible to get a referral to one outside my health board area. It seems to be something to do with the funding, unless anyone can advise me otherwise. It’s good to see that the system with the PCT’s in England seem more flexible.

I don’t want to see another neuro in my area as I would prefer a completely impartial consultation. A new clinician can take a new clinical history and perform a new clinical examination and make a decision based on what they find and not what a previous neuro has said or done. I’ve been talking with my family and decided to go for a private consultation probabaly in England, at least I will get a longer time with the MS neuro so that they can assess things fully. I’ve started to look at the site for MS Specialists as you suggest - thanks for this

Karen, I will ask my GP for a letter as you suggest and request that he only puts in it any relevant information and no information from my present neuro that can give any pre conceived ideas regarding diagnosis.

I am so glad I’ve joined this site so a massive thanks to you all. I will keep you posted. xxxxxx

Hello everyone !

Just to let you know that my Local Health Board agreed that my GP can refer me to another consultant outside of my Hospital Trust so I am now being referred to a proper MS neuro at last. I had my cervical spine MRI last week after being on a long waiting list. Hopefully the results will be back soon. I am going to purchase the films of both the Brain and Cervical Spine MRI’s so that I can take them with me to my new consultant.

Thanks to everyone who offered advice - you have been fab !

xx

Hi ! Belated happy New Year !

Finally got to see the MS neurologist in another hospital. What a difference ! I had the most comprehensive neurological examination. Whereas he didn’t seem to be the doctor with the best people skills he was thorough and he offered explanations and a way forward. He showed me possible inflammatory lesions on my old MRI and did agree with the previous consultant that the diagnosis of Benign MS was probably right though he suggested further investigations as I am still symptomatic. I will be having another MRI of brain, cervical spine as well as thoracic this time. What was good is that he listened to me explaining my symptoms, accurately recorded any signs and gave advice on appropriate further tests. I’m also having a lumbar puncture soon and VEP - not looking forward to the former but at least it helps to have a clearer picture of things.

I still feel a bit in limbo as I’m still having symptoms but at least everything is being done that can be at this stage and that’s positive. Hopefully I will get a definite diagnosis of what what type of MS.

Thanks to everyone of you who has taken time to offer advice and support- will be back soon ! xx

Glad to hear that you saw someone better. I still say that, unless you’ve been having symptoms for more than 10-15 years, the benign MS thing is rubbish, but then neuros do not like to contradict their colleagues, no matter how stupid they’ve been!

I hope the tests go well and you get some proper answers soon!

Kx

Hi ! I can’t believe I am back on the forum again upset at being passed from pillar to post by doctors. I had new MRI with gardolinium and according to a letter I have from my neuro this was clear. My LP was clear apparently yet my VEP was abnormal. I have gone through being diagnosed as Benign MS by my first neuro to possible MS and now MS excluded by a second neuro. I have been positively diagnosed with Lupus Anticoagulant which apparently mimics MS but can be treated , however, I have been receiving treatment in the form of Clopidogrel for the past 8 months - numbness of foot, leg, buttocks and arm still the same. Getting tired and exhausted so much. Muscle spasms in legs are troublesome too. I haven’t seen my neuro since November and he has written to my GP to say I am on the waiting list for a follow up appointment , but no date given. I feel totally let down. My GP has now referred me to a Haematologist for some help with this Lupus Anticoagulant but only after I went to see them as my symptoms are worsening. I feel there is no support especially as I still have these ongoing symptoms- being in limbo is horrible but limbo without anyone to discuss my problems with his horrible. Thanks so much for listening Xxxx

Was wondering if anyone could tell me if MS can be diagnosed with abnormal VEP’s and clinical signs only or does the diagnosis need abnormal MRI and LP. Thanks x