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feeling unhappy with neurologist or is it me

I had my first attack in october and although my initial symptoms improved I have had a lot of pain in my legs and feet. I am on amtriplyin but I’m only building up the dose. The pain has been in both legs st different times and I have found it hard to walk far or stand still for periods of time. I have also had spasms, my toes have moved independently and have often limped.I have Reynolds as well apparently and often have blue knees, feet and chilblains. I had a new MRI at the end of January which showed no progression and some improvement in the overall picture with the white matter lesions being less conspicuous. My consultant thinks the symptoms in my legs is anxiety generated symptoms. I meet with a psychologist last week who doesn’t believe this to be the case. I have requested physio but as yet haven’t had any appointment as I think they all think that these symptoms are not active ms but anxiety related. Any ideas what to do next, I have been doing a lot more in the last week, driving and walking and the pain has been more manageable but I tend to get to a point and then hurt more. An example of this is that I hurt more after driving but this I expect what I don’t expect is numb patches on my foot and burning pain. Could this be the raynalds or the ms. No one seems to listen, I emailed the consultant and had a letter today basically saying , yes you have ms but the sensory symptoms are anxiety.I called the MRI department for a copy of the MRI reports but was told I can buy disc but can’t get a report and called the consultants secretary who advised I could email a request for the MRI reports and she would ask the consultant if I can have them. I worried to do this as they already think I’m mad but I really wanted to know where the lesions are and if these could have effected my legs ( I was going to ask rizzos opinion) my spine is clear. Should I push this or get a second opinion as I have been very stressed but find it hard to believe my anxiety makes me limp, spasm etc. Thanks zoe

I can have a look at your MRI for you, if you get the disc. I’m not a radiologist, but I might be able to answer some of your questions.

I have never heard a neuro tell someone with MS that their sensory symptoms are due to anxiety. It seems really quite bizarre! Sensory symptoms in MS are very very real and are caused by damage to the pathways that control sensation. They can be made worse by anxiety and fatigue, just like any symptom, and I guess anyone can have functional symptoms even if they have MS, but to dismiss your symptoms like that is not very helpful :frowning:

I’m wondering if some of your symptoms are due to fatigue. MS fatigue is not just extreme tiredness - it is a neurological problem that affects the way the nervous system is working, making symptoms worse, legs and arms feel heavier and everything a Herculean effort. The more fatigued your brain and muscles get, the more you will feel things that you don’t normally. It doesn’t mean there is more damage / new lesions.

So if these symptoms come on after a while of doing something (physical or mental), but are gone by morning or after a good rest, it may all be due to fatigue “unmasking” underlying, existing symptoms. (We most of us have symptoms that come and go from day to day, depending on what we’re doing, how fatigued we are, whether it’s hot or cold, etc.)

There may be a longish waiting list for neurophysio, but make sure that they have actually received a referral. There is no reason that neurophysio wouldn’t see you if they have received a referral. They might mark it not urgent, but if you have leg symptoms then you have leg symptoms and they are there to help with them, no matter what the referral says about the cause.

A lesion in the spinal cord is a common cause of leg problems, but spinal MRI is not as good as brain MRI and lesions are often invisible. When it comes to MRI/lesions and symptoms, working out where damage might be is best done by looking at the symptoms rather than the MRI. So, e.g., if someone has optic neuritis, they must have damage to their optic nerve, even if the MRI is clear. The same goes with legs. If someone has spasticity or spasms in their legs, they must have damage to their upper motor neuron, even if there is no obvious lesion on their spinal or brain MRI.

Hth!

Karen x

Thanks Karen, I have called and requested a disk, have to have a form sent to me, then send back with proof of I’d and then wait so might be a while till I get it. I have an appointment with the ms nurse next week so I’ll also discuss everything with her.

Zoe

I always thought that if the legs were causing problems then this meant the lesions were on the spine, however someone on here and also when I googled it said that a lesion in the brain cos cause this because its also connected with the signals that its not sending. X

Cos Should have been could…silly predictive. What I’m saying is I was told not to presume that this means there are lesions on the spine. X