Well I’m back. He was really nice even if he was running 45 minutes late! The referral letter had the whole story so it didn’t really feel like a clean slate as he kept going back to it. He tested my reflexes and got me to walk in a straight line (that didn’t go well!) then said I had chronic fatigue syndrome. He hasn’t seen my mri and said there was no point in doing another as it was clear. I asked about neck and spine and he said it wouldn’t show anything. My left side reflexes were brisk and I had an abnormal Babinski but he didn’t really say much else about that. He said it was unlikely to be ms as my symptoms had gone away totally for a few months then come back and my leg weakness wasn’t the right sort. So that’s my diagnosis. There is no point in questioning it. He wasn’t sure I had such bad pins and needles but it was probably linked. It looks like I’m leaving our happy little band. Thanks for all the support Xxx
That sounds strange to ignore abnormal reflexes! And why wouldn’t a spine scan show anything??? I thought MS symptoms do go away for a bit? Oh blimey, so many questions, we need our experts to answer. Anyhow, you need to stay because you’ve got neurological problems which are still unanswered!
Sorry it was so pointless : (
Hugs xx
Sorry Nikki I was hoping you would get somewhere today. I’m very sorry you didn’t. As Deb says, do not leave as you have unanswered neurological problems. Please try not to get too downcast. Teresa xx
Sorry for the anon, but chronic fatigue syndrome/m.e. can be horribly debilitating, and can cause severe symptoms, many very similar to ms. There are quite a few people on here in the same boat, and some, but not all DO go on to have proof of MS eventually. Please don’t think its better or worse to have either. Be gratefull you DON’T have MS, but don’t make the mistake of thinking M.E/cfs is not real. It is. And could well account for your symptoms. Read up on some of the people who are so severely affected they are bed ridden or wheelchair bound. It is serious, and you will need to address that and get the right help and care from your medical people. Getting the right help and treatment for the illness you DO have is far more important than worrying about something that MAY or may not develop/be discovered later. If it is MS it will surely show itself eventually, in the meantime, if there is no evidence for it, put your energy into dealing with what is happening now, because really it doesn’t much matter what its called, it is what it is, and you need to treat it the best you can. Good luck xx
Thanks deb and Teresa x Anon I wasn’t belittling cfs I know how debilitating it can be. The problem is I’ve been told so many things that I don’t know whether I’m coming or going. He didn’t say it wasn’t ms I would have felt better if he had. The main thing is everyone has said I have neurological symptoms and that doesn’t fit with cfs. I asked about treatment and He said sometimes physio works but not often, sometimes cbt works but it might not and there aren’t any meds that help. So no it’s not that I’m worrying about things that might not happen I’m worrying that things won’t happen. I’m stuck feeling awful and I have to just put up with it. It’s hard when you can’t even walk in a straight line. This is likely to be my last post 
I am in touch with Nikki via pm. I am giving her my full support.
Anon - put her energy into what is happening now? it doesn’t matter what it is called?
Treat it the best way she can?
I really don’t understand your comments.
Nikki has symptoms that are not explained by cfs and she feels she is banging her head against a wall to get some answers. Energy? she doesn’t have any!!
Well it does matter what it is called because if it is misdiagnosed and is ms she could be taking the dmd’s early therefore slowing down this awful condition.
Treat the condition she has? She doesn’t seem to be offered anything to treat her condition at all. Nikki has been left to deal with this by herself with very little help.
Nikki needs support at the moment. I thought thats what this site was all about!
Teresa.
Hi Nikki - so sorry you didn’t really get any answers. BUT PLEASE DON’T GO WE NEED YOU Hugs Minxx
Oh Nikki xxxx I’m so sorry you are still left with uncertainty xxx
Anon I understand where you are coming from and you do make total sense xxx
BUT and it’s a big BUT!! Yet again we are hearing of neuros who make initial judgements and those judgements get passed on and on.
Yet again someone has come out of a consultation with more questions than answers!!!
Why aren’t they doing a spinal MRI??? WHY???
Brisk reflexes and positive Babinski coupled with the neurological type symptoms Nikki is experiencing are unusual in CFS.
If they are unsure of the diagnoses they should not ‘cop out’ and blame it on the nearest easy ‘label’!!
A good and correct outcome of that consultation should have been an admittance that they still don’t know what is wrong and a further commitment to finding out. Nikki should have walked out of there with at least a referral for a spine MRI and any other test Nikki has not yet had.
We need to be able to trust that these people have done their jobs properly before we accept any kind of diagnoses - I’m sure Nikki would feel just as daunted & dissatisfied if they had done a blood test and a hearing test & declared you have MS!!!
Nikki stick with us my lovely - as far as we are concerned you are clearly still in limbo xxxxxjenxxxxx
Hi Nikki
gosh I’m sorry this hasn’t gone the way you anticipated. It seems a bit like as your MRI was normal he’s brushed everything a bit under the carpet or isn’t sure and has labelled it as ME/CFS. We could understand the logic if he’d turned round and explained your abnormal neuro exam (babinski etc) but he hasn’t.
Has he suggested plan for follow-up any meds?
I certainly wouldn’t be so quick to leave either Nikki. You do have neuro symptoms that aren’t entirely explained by the label you have been given. Stay here at least we can support you if there are any new developments.
I’m sorry again Nikki that you’ve come away feeling disatisfied. I think it really does show what flaws there are in the neuro profession. With a essentially normal MRI, sensory disturbance on neuro exam I have been told that I could have MS and you with your normal MRI and positive babinski have been told CFS/ME.I know its not quiet as straight forward as that and these conditions aren’t easy to diagnose and don’t fit text book. It’s why I think doctors need to try and listen to patients more and even if they don’t have a diagnosis be open and upfront and say these are the things you could be. I don’t know which one yet as there isn’t enough evidence. But I’m going to try my best to find out.
Big hug Nikki.
Reemz
X
I don’t like the sound of unexplained abnormal reflexes and Babinski’s Spinal MRI isn’t terribly good, but it wouldn’t exactly break their budget to have a look. If your GP is supportive, might he/she refer you for one? I don’t know much about CFS, but I do know that ME is a more appropriate diagnosis - and can be devastating in neuro terms so I can see what anon meant. If it’s MS and not ME, it will reveal itself eventually too. Not much comfort when you need answers now though I hope your GP will help out. Karen x
Hi Nikki, please don’t leave us!
I was dx with CFS / ME (by the way, they are the same condition. There was a time when they tried to change the name of ME to CFS but it didn’t really work so now both names exist). I saw an ME specialist and she sent me for a brain MRI which was beginning of road to dx of MS.
If I were you I would do a bit of research and see if you can find an ME specialist in your area or close enough to get to… then ask GP for a referal.
The ME specialist might see the abnormal reflexes and Babinski’s quite differently! Anyway I think it would be a good move for you just to see what a specialist would say and if he/she thinks ME or possible MS.
Good luck hon and don’t think you have to leave us!
Pat x
I feel now I should post to explain things. Last night I was emotional, confused and frustrated. I come here because I know I will get support and felt a few comments were not very pleasant (More than one person) To the rest, Thank you.
I barely slept last night and spent ages researching cfs. I have really tried to make my symptoms fit it and I just can’t. One of the main diagnostic criteria is it has to have been ongoing for 6 months with no break and it hasn’t. It says the main most problematic symptom is extreme fatigue where you are too tired even to walk sometimes and that just isn’t me. There are many things that just dont fit and yes the reflex thing worries me.
The neuro said to me I have to give you a diagnosis because you are paying me! He said they aren’t allowed to call it me anymore it has to be cfs which, to me, sounds like you have been quite tired for a while! ME actually sounds like a real condition.
Pat thank you for the suggestion of an me specialist I will definitely look into it. I have made an appointment with my gp who is really supportive for as soon as possible so of course its in 2 weeks!
One final thing. I want to say a MASSIVE thank you to Treek. She has been amazing and has supported me totally, I don’t know what I would have done without her. Last night I was at my lowest point and I don’t really feel much higher up today.
I meant to say as well. I was mad with myself because I forgot to take my list and it wasn’t until I cane out that I realised I had forgotten to tell him some things.
No no no no no Nikki! You`re like me…undiagnosed and could be forever.
But when I said I felt I should leave this forum, I had countless replies urging me to stay!
So I am doing the same for you.
If members are happy to see our names, read our posts and value our support, then yes, stay!!!
much love Pollxx
You are very welcome Nikki,
If you can’t get the support you need from here then where can you get it from?
You still need us so please stay.
You can help others who so desperately need help and are in limbo. Help from someone who has gone through simular things is invaluable in my opinion.
As you know - i have never really been in limbo as my diagnosis came quickly but i have sympathy for anyone in this situation as i would hate it!
Poll my love i don’t know how you have managed to get through those 14 years without losing the plot!! You are amazing.
Best wishes
Teresa.x
(((Hugs Nikki))) and please don’t beat yourself up about forgetting to take your list with you. It’s an easy thing to do when we have so many things on our mind. I’ve done it countless times myself as I’m sure most of us have.
I think Pat’s advice is sound and that you’ve done the right thing by having made an appt with your GP - it’s a good starting point. Receiving a diagnosis of any kind is a mind bender in itself, let alone when there’s doubt as to whether it’s the right one or not. I don’t know how I’d be feeling if it were me, but I do know that I’d need support and a listening ear, so please don’t leave us.
You know how you feel, try all avenues.
I know that doesn’t change how you’re feeling right now but you deserve to know what’s going on. Let that be what drives you on - to get the help that you so deserve.
PM me anytime you want Nikki.
Debbie xx
Hello Nikki.
I’m in exactly the same position. I was told I have cfs in July after my mri was clear. Actually I did have a diagnosis of benign ms for about 20 minutes but he changed his mind when i asked for something to help with the fatigue! I’ve had an abnormal lumber puncture and and abnormal vep test. The neuro also found brisk reflexes and ‘upper motor neurone signs’ (whatever they might be!!) I’ve also had optic neuritis twice.
I’ve spent some time looking into cfs since July but like you, I really can’t make it fit. I don’t know what is wrong with me; I’ve had 3 clear mri’s over the years and can’t help feeling if it was ms it probably would have shown up by now. I just know that my symptoms don’t fit cfs. I keep coming back here (even though I lurk more than post!) because I can relate to more symptoms here than I can on the cfs forums.
I hope you continue to post. I’ve been lurking a very long time (oh dear, that sounds more sinister than I meant it to!! ) and I’ve never doubted the kindness and support available here. I hope your next appointment is more successful.
Nikki must stay!
Hi nikki, you have a lot of support here, so many people who understand and want to help. I left the forum for a while but have been checking in lately as still feel I need answers. I had a dx of cfs/me after 3years of balance probs then muscle spasms, pins and needles, burning etc. Mris clear, was told by neuro no reason I wouldn’t make full recovery but if symptoms persisted should ask to see me specialist. Brisk reflexes and abnormal babinski s were back to normal when I saw him 4 months later. He said neuro symptoms WERE common with me.2 years later I’m back on this forum because still not happy I have right dx. On amitryptlene and gabapentin and solifenacin for bladder probs that continence nurse said are neurological. At least we can all support each other, hugs xx
Nikki ME is classed as a neurological disorder by the World Health Organistion. The title Chronic Fatigue Syndrome for all affected by it doesn’t cover all of the symptoms. Look for the 25% ME group. These people are so ill they are permanantly bedbound.
Read about Sophia Mirza. She is the first person in the UK to have the cause of death as ME on her death certificate. The pathologist found inflammation on her spinal cord.
I was admitted to hospital fourteen years ago with retrobulbar neuritis and spastic weakness of my legs. My neuro discharged me six months later with ME and told me it was up to me to get better. Five weeks later I had a second opinion with an MS specialist who wrote in my notes “I think this is MS” and admitted me into hospital.
Fourteen years later I’ve been diagnosed with ME, MS, probable PPMS, probable hereditary spastic paraplegia, probable neuromyelitis optica. In november I’m having a muscle biopsy to rule out primary lateral sclerosis.
Over the years my symptoms have progressed. I have optic atrophy, spastic paraplegia, trouble with both arms, ataxia, swallowing problems and speech problems, dysarthia. I do use a wheelchair outdoors. I’ve come to the conclusion as long as my symptoms can be controlled with medication a name doesn’t matter.
Many neuro disorders have similar symptoms so we can support one another.
Jacqui xx