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Confused by neuro appointment

Hi, I saw my neuro yesterday after my dr referred me. I largely have sensory problems, pain in my hands , and arms mainly and legs and feet. I initially had ms hug as well. That started 3 years ago. Had MRI that showed a couple of lesions and an active area of inflammation . I also had a positive lumbar puncture. Then my bladder started to play up and my walking deteriorated and I went from being able to walk all day ( did Coast to Coast , lyke Wake walk etc) to struggling to walk a mile and walking around furniture to help me at the end of the day when I was tired. I then had another MRI that showed a new lesion and ms was confirmed. My bladder and walking improved but hands and feet pain has stayed. In April I found that one day I got up and couldn’t hold the kettle with one hand anymore. I was shaking too much. I needed to use both hands to steady myself. I needed to use both hands to steady myself to drink and trying to eat with a knife and fork, I was just so shakey. This has gradually improved but still with me. I then had a episode where I had head pain like is just been hit over the head . During this I lost control over my bladder completely on one occasion then it was back to urgency problems which I hadn’t had for months. I’ve been taking tablets to help with bladder and that’s helped. So that’s my history( sorry it’s long) Back to my neuro. I saw her yesterday and she seemed to think tremor is nervousness . I know my neurological examination was goodish and she thinks that the symptoms are just exacerbations from my initial attack so would say that I don’t qualify for dmds and that it’s CIS. But then said its ms. I’m confused. She then kept asking what is it you think we should do. What would help me? Just really confused. Any advice and sorry for the long post.

Hi I don’t know what to say to help you. But maybe it would be worth speaking to ur doctor and get referred to another neuro as it appears there have been changes. X

Is your neuro an MS specialist? If three years ago you had an MRI that showed lesions I guess that could have been CIS but after a disabling attack you had another MRI and MS was confirmed. So it can’t go back to CIS.

If episodes are more than 30 days apart from what I’ve read (and what my MS specialist seemed to be working on) they count as separate relapses. You seem to have had 2 or more disabling relapses so most MS specialists would count that as eligible for DMDs - possibly more effective than interferon or Copaxone.

Only MS specialists can prescribe MS drugs.

I had fairly mild symptoms 18 months after acute Optic Neuritis (CIS) but it was life altering - enough to make me change plans to get another dog (my hobby). While waiting on the neurology list I had what my current neurologist (MS specialist) counted as a relapse that further reduced my capabilities. At DX I didn’t push for treatment and the neurologist (not a MS specialist) advised no action at the that time but now I wish I had. Current thinking seems to be that relapses apart from being disabling at the time, probably cause some neurodegeneration later on. After more symptoms I was referred to a MS specialist and prescribed drugs.

Hi - I also did the Lyke Wake Walk 25 years ago and now have to walk with the aid of furniture or stick all the time. It is really frustrating, and I feel so helpless when I know I have to accept help and link arms to help me walk just short distances. I was diagnosed benign MS and have had no medication since dx 20 years ago. I am sorry I cannot help with information as I also don’t feel that I have been given the right treament over previous years.

I am pushing for a reassessment with a Neuro consultant, but GP does not feel it would help me at all, as there is nothing they can do anyway. (I mentioned fatigue and he said I was perhaps anaemic so organised a blood test !! which was of course negative.)

I hope you get some answers to your quesions from others on this site who have had similar symptoms.

Jackie xx

Where have all the MS Specialists gone? - Your experience with your Neuro is about as good as any l have seen.

Ask your GP - or on here - if there is a MS specialist in your area.

Dont be fobbed off.

Thanks for the replies. My neuro really made me feel like u was making a fuss over nothing and that I was a nuisance. I wish either my dr or neuro seemed to know more about ms and with no ms nurse it’s them that I have to rely on for my care. I’ll try my dr again.