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Confused, need advice please.

Hi am new. (long story short here). Got struck down with numbing in right leg left foot,and left face nose April this year, after getting MRI to see if it was a trapped nerve in the back it was NOT, I was Passed on to an neurologist in July he said that “That I have an working diagnose of MS, based on what he had seen and heard”, he then said to me “I need to go for a MRI scan on the head, call his secretary as soon as i get my MRI and if he CAN’T see anything on the MRI he will organise a lumber puncture, and I will get a date for that”. Yesterday I got a letter from my neurologist with an appointment to see him 19th Sept at his clinic, no word of a lumber puncture on it, so I have to wait till a week Monday. This is were am confused, dose this mean he saw something in the MRI and will it be MS or something else? All my symptoms are MS related still to this day, my leg has got better but I still have spasms in my thigh and tightness, am very tired and sleep a lot, my feet feel like they are on fire at times, my holiday in Spain was terrible due to the heat. This has been going on now for six months it’s driving me nuts the not knowing, my work are not allowing me back until they find out what I have, every day is like groundhog day for me, a week Monday seems a million miles away because I WANT TO KNOW MY RESULTS. Anything else it could be ? Thanks in advance.

Hi Stephen, and welcome to the site :slight_smile: The world of neuros works in a rather strange way, so although it sounds likely that your MRI scans were positive, it could actually be that this appointment has been made automatically by an admin assistant somewhere who doesn’t know anything about your tests. There are four possibilities for your MRI results: that they were consistent with MS, consistent with something else, inconclusive, or negative. So, I’d try and keep an open mind for now. Almost impossible not to worry, I know, but what will be will be. Let us know what happens! Karen x PS Make sure and take a list of questions with you to the appointment, along with a list of any symptoms that you need help with (which could be meds or treatment). Also a very good idea to take someone with you - an extra pair of ears can be invaluable!

rizzo27 wrote:

Hi Stephen, and welcome to the site :slight_smile: The world of neuros works in a rather strange way, so although it sounds likely that your MRI scans were positive, it could actually be that this appointment has been made automatically by an admin assistant somewhere who doesn’t know anything about your tests. There are four possibilities for your MRI results: that they were consistent with MS, consistent with something else, inconclusive, or negative. So, I’d try and keep an open mind for now. Almost impossible not to worry, I know, but what will be will be. Let us know what happens! Karen x PS Make sure and take a list of questions with you to the appointment, along with a list of any symptoms that you need help with (which could be meds or treatment). Also a very good idea to take someone with you - an extra pair of ears can be invaluable!

Hi Karen thanks, I meant to say, I had to phone his secetary to speak about something she then told me on the phone “that my notes state if anything shows on the MRI scan then I would see the Dr, if nothing is seen on it, she had to arrange the lumber puncture”, she read this out to me. So I really can’t see them making a appointment to see him if both knew I was ONLY to get the lumber puncture if nothing was seen. This is why it confuses me. :roll:

Certainly sounds like there’s something on the MRI then. Given the past conversation, it could well be confirmation of MS. There are some other conditions that cause similar symptoms to MS, but different, positive, MRI results. So there is a chance that your results suggest a different condition, but I would have thought that your original clinical exam would have been less typical of MS if this was the case. (I am guessing it must have been, given the neuro’s unusually forthright statement about a working diagnosis of MS - most of them say nothing!). I could be wrong though! Kx

rizzo27 wrote:

Certainly sounds like there’s something on the MRI then. Given the past conversation, it could well be confirmation of MS. There are some other conditions that cause similar symptoms to MS, but different, positive, MRI results. So there is a chance that your results suggest a different condition, but I would have thought that your original clinical exam would have been less typical of MS if this was the case. (I am guessing it must have been, given the neuro’s unusually forthright statement about a working diagnosis of MS - most of them say nothing!). I could be wrong though! Kx

Thanks again. The neuro was the one that said “he’s given me a working DX of MS”. When you say “other things similar to MS”, what are these ? I have heard this several times from friends etc; yet no one seems to say exactly what they are. Cheers.

Hi stephen The other things that sound like MS are the fatigue, before I was diagnosed I had changed my hours at work due to fatigue. I simply could not get up in time to be at work. Your feet being on fire is a symptom very common with me and lastly your responce to heat. I do not go on holiday anymore to places that are hot, simply because I can no longer function when it’s hot. I get tired very quickly, my sight goes completely and I get terrible itching and numbness all down my arms and legs… In fact it’s horrible. Last year at Glastonbury when it was super hot, I did not come out during the day that much and spent a fair bit of time in the showers in the disabled camping area trying to cool down. I know it’s a bugger waiting to hear the results. However as has been said take a list of questions with you. I am sure when you meet your neuro he will explain what they have/have not found and what the next course of action will be and why they are doing that. Best if luck and keep us updated, also ask any questions you want. There are so many great people on this site who are willing to share info. Strudders

There are actually a long list of conditions that cause demyelination and/or symptoms that are similar to MS. Some are sort of variants of MS, e.g. NMO/Devics. Some are genetic, so unless there is a family history of similar problems it is unlikely that you have one of them. Some are due to “outside agents” like toxins, viruses, infections, etc. e.g. radiation, PML (the infection that can be, very rarely, triggered by Tysabri). Some are deficiencies, e.g. vitamin B12 deficiency & vitamin E deficiency. Even migraine can cause periods of neurological symptoms that appear very like attacks of MS. The leukodystrophies can also be similar to MS in some patients. There’s also Hughes Syndrome - a curable condition that mimics MS. That’s why diagnosing MS can be hard, especially when there’s no definitive test. Tbh, there is little point in worrying about it. In this kind of thing, you have to put your faith in the neuro and try and be patient. Kx

Thanks Karen & Strudders for taking the time to reply. I have been waiting for sometime for a answer to what I have, so a week Monday is not that far away, hopefully then I can know one way or the other what my next route is. I will let you’s know as well,thanks again.