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In the family?

This might be a bit longwinded but I will try and keep it short. In 2005 I woke up at home the next day after an operation ti find I was numb from the waist down. I was able to walk stand and function but the numbness increased to up my torse and down by arms. Afraid I attended the Doctor who sent me to the Neuro Consultant. After an MRI and lumber puncture I was found to have lesions on C2/3 and after six month another appeared on C4. Bewteen the Consultant and myself we agreed that since my syptoms had not returned that we would leave well alone and if anything changed I would go back an see him. It is not 2014 and I have had no further flare ups although I still have numbness in my feet and hands and occasionally in my back.

My Sister who lives in OZ has recently been diagnosed with RRMS as she woke up one morning last year to have the same numbness in her feet and legs. As she lives in OZ she had to go Private and was put on a course of steriods which ment she improve in a few weeks. Her CT scan showed lesions on her brain and after six months another lesion appeared on her brain. Her symptoms have disappeared completely. Her consultant wants to put her on a drug called Tecfidera stating she definately has RRMS as she has had one flare up!!

My question is this - do we both have RRMS or is there a difference between lesions on the brain and lesions on the spine? I am confused and so is she as she does not know if she should take the drugs for something which may never return. Thank for any help.

Lynn

What a worrying time for you and your family - I am sorry.

I have no expertise whatsoever here, but my lay-person’s view is that how MS is diagnosed and treated is by no means an exact science: there’s a lot of variation in terms of geography, national and local standards and guidelines, and what individual neurologists will decide is the best thing for an individual patient using their professional judgement and experience and knowledge of that patient’s unique circumstances. And all those things are in a state of flux all the time, as scientific consensus and fashion (to which the practice of medicine is not immune) shifts and changes.

I think you and your sister would need to sit in on a Skype chat between her neurologist and hers if you wanted a detailed view on how similar or different are her and your signs and symptoms, and how that has played out in terms of what they have recommended to you both. Anything else would be guesswork, and even that would probably not give either of you a wholly satisfactory explanation.

Given that this is most likely not possible, I guess that the best that both of you can do is to accept that your neurologist is treating your condition, and your sister’s is treating hers - so no surprise that your neurologists are taking different tacks, and nothing necessarily wrong with it either.

But it’s an awful puzzle for you both, on top of everything.

Alison

Thanks Alison,

Good advice, We are very confused and I think we are being treated very individually. Our main confusion was that after only one episode she was confirmed as having rrms and straight away told should would need to take medication. After this happened to me I think she is confused as to why as this may never occur again.

I dont think her Neurologist would link with me via Skype. She is very concerned about taking medication that is “new to the market” and has been asked to fill in a diary of how these drugs affect her. She feels that this is more like being a test subject rather than treating her considering she has no symptoms and on reading the information booklet there seems to a very large amount of side effects (sickness flushing diarrhoe). She has decided against taking any medication for the moment until she has a bit of time to decide how best to proceed for herself.

We where just wondering if there where any other siblings in the same boat as everyone has been telling us this is not hereditary. I do know that the chances do increase if a parent or sibling has it and although we do not have contact with our biological Father we know he does have MS.

Lynn

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I am adopted so don’t know my medical history, although at eight was diagnosed with psorasis and then at 17 with ulcerative colitis, my daughter was premature and at 18 months developed idiopathic thrombocytopenia purpura at four she developed ciccatricial pemphigoid, both of hers and mine are autoimmune disorders. My neuro asked at my first appointment do you or your family have any auto immune disorders…I told him I’m adopted but this is what I have and this is what my daughter has…he then asked about miscarriages…I had three…he actually told me to get my daughter referred as she currently at 21 has joint pain, eyesight problems and fatigue…she has a four rear old which could explain the tiredness…however when she was pregnant the ciccatricial pemphigoid had been in remission for three years…her consultant told her at 14…you have two at the moment you could end up with three or four…I have numbness, vertigo, eye tics, seizures, fuzzy head, headaches, the MRI showed lesions on my brain, but my MRI on spine showed none, EEG and lumbar tests are expected next month…I’m not able to work any more, feel stressed cause I want to do things but can’t but to cut a long story short, reading on internet there is a genetic connection, since my last seizure in March, my life has went downhill completely, I don’t know what type I may or may not have but I know as a 45 year old woman, who has had a relatively healthy life that this is not me. I am also being treated for epilepsy at the moment too, had convulsions as a child so my neuro is being cautious xxxxx