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Letter from Neuro - why not explain in layman's terms?

Hi everyone hope your all as well as can be. I recieved a letter from my Neuro today and most of it I understand Ataxic gate I understand Decreased co-ordination I understand Nystagmus with a fast phase to the left??? Cranial nerves II to XII were inact?? Power to the left 4/5 globally upper body?? Lower limb increased tone with power been 4/5 globally associated withbrisk knee and ankle reflexes and sustained clonus, the planters were extensor on the left?? Downgoing planters?? Why can’t they just explain it as it is, confused is not the word. Oh and to top it off no dmd’s as now Secondary Progressive :frowning: Any one know of what any of the above might mean?? Thanks in advance Sue x

Letter from the Neurotic…Never had one in 12 years.

I feel sure that some of the kind souls on here will translate for you

Wb

Thank you have to say it’s a first for me in 18 1/2 yrs!! Sue

Hi Sue,

Is the letter actually to you, or is it a copy of one sent to your GP?

If it’s between fellow medics, and only courtesy copy to you, then I would expect them to use professional terminology amongst themselves.

However, if it’s actually TO you, and not your doctor, then I agree it should have been phrased in terms a lay person can understand.

Tina

Hi Tina Yes it’s been sent to my doctor too, but even so you would think it common courtesy to explain it to me afterall it is regarding me!! Sue x

Hi Sue,

They would leave it to your doctor to translate, or (ideally) do so during the consultation itself. The letter to your doctor should only be the formal record of what happened at the consultation, which you should have been told at the time. Perhaps you should consider an appointment with the doctor, to discuss the contents of the letter? Mine will do phone consultations these days, so you might be able to have a chat about it, without even having to go in.

Having said all that, a discussion of what it all means probably won’t make a radical difference to what they intend to do about any of it. As you say, if it’s 2ndry progressive, DMDs aren’t on the cards anyway. You might want to enquire if there are any recommendations re symptom control - if you have any that are not already being addressed, that is.

Tina

x

Hi Sue I had a copy of the letter that was sent to my GP recently and like you couldnt make head no tail of it. And spoke with my MS nurse a couple of days ago and mentioned the letter to her and she couldnt even explain it. She told me it might be best to ask the neuro next time I see him. Im losing all hope with these people.

kim

Hi Kim,as a crazy notion,could you scan the letter then paste it on here,and I bet that the ‘Brains’ would have a go at deciphering it.Spose doing that raises confidentiality issues,but I did say it was crazy,

Laters,

Wb x

Hi again Yes Tina it was sent to my doctor too, I was just a little bemused as I’ve never had copies of anything in all the 18+ yrs I’ve had MS. Looks like I’ll be taking a trip to the doctors for translation Sue x

hi

Nystagmus is abnormal involuntary fast movement of eyes usually horizontally in your case faster to the left. Plantar(babinski) reflexes are usually plantar/downgoing ie when the bottom of the foot is stimulated the toe moves down, a flexor reflex ie toe moves up reflects motor nerve damage. The cranial nerves 1 to 12 control the head and neck eg 1 is the optic nerve and 7 the facial nerve yours were therefore fine. Power globally 4/5 on left ie all muscles on left slightly reduced power 5/5 = full power. Your knee and ankle reflexes are more exaggerated than normal , this along with clonus(sustained muscle contractions in your calf when stretched) are signs of motor nerve damage. All are fairly common findings and are nothing to be particularly concerned about.

Graeme ( retired GP)

P.S. motor nerves control movement as opposed to sensory nerves involved in sensation.

Thank you Chestnut I really appreciate it. Sue x