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Mum with M.S myself with M.E or is it...?

Hi to everyone, I am new :0) I have my Mum who is in the last stages of M.S and I love her to bits, she is unable to move from the neck down, but is such a fantastic woman, so strong… I looked after her on my own form the age of 12 to 38 … I was diagnosed in 1997 with M.E but was told by three doctors that is could well be M.S. I had an MRI that showed little up at that time, and was told to have another in a few years to see if any legions were present… I have been poorly for over 20 years, and after I was told I had M.E I was ignored and ridiculed by the so say professionals and have had to fight for everything. However I had a breakthrough with my doctor this week, she is going to send me to a new neurologist !!! Yah! Hopefully this one will not tell me to stop looking for a different diagnoses and shove me out the door! I love my Mum to bits, but our symptoms are so very similar , I have to get this checked out, I no little can be done to help even then but, I just feel inside there has to be more to my illness. At this time, one of my legs is crawling, feels like one minuet it’s in boiling oil the next an ice bath, the pins and needles!, I get this all over along with permenant numbness in my chest and upper thighs… I feel I have been grossly mistreated, all because Mum has M.S and they think I want to be just like her!!! The most precious thing is your health, why would you want to be ill…? Sorry to rant, but neurological illnesses are running right through my families female line… Why are the doctors being so cruel to me? I am on so many drugs, and have so many symptoms, and I just get ignored:0( I am very low, and in so much pain and discomfort, i just want to be herd! Nicole x

Hi Nicole,

I’m sorry your mum is so poorly, but what a lucky mum she is to have had so much love and care from you hun, as she undoubtedly knows.

I don’t think many people realise just how badly people with ME are still treated these days. I didn’t really appreciate the difference myself until I got my MS diagnosis and found myself suddenly overwhelmed with the number of referrals and appointments I was having, where there was previously nothing. Please make sure that your GP does refer you, they do need a bit of prompting sometimes!

I know you’re feeling low at the moment but hopefully things will now change and you will get some answers. So, you’re not alone and do let us know how it goes.

Btw, my mum also has MS.

Mags xx

Hi Mags, Thanks for your reply, yes Mum dose know how much she is loved :0) we are very close. I read some time ago, that M.S can run from mother to daughter, and a lot of families had more than three or four members with M.S, so why I have never been taken seriously I will never know… I am sorry to hear your Mum has it to, I don’t know about you, but I find watching Mum battle with it, is like watching myself… All be it I have got to a slightly older age before becoming so bad… I will let you know how it goes, I am supposed to get this refurral quit quick so fingers crossed… X

Hi Nicole and welcome…

I am sorry to hear that your mum is so poorly.

I was dx initially with ME and agree that it is still not taken seriously… not only by medical profession but by people generally. I was surprised by the difference in attitude once I got a dx of MS.

People with a member of family with MS do have a slightly higher chance of getting it. It’s not passed down in the genes but there are risk factors that are inhereted (wish I could explain that better but don’t fully understand it myself).

I have not heard of it going from mother to daughter… and I have read loads about MS… so I don’t think that is true. But I suppose there’s some truth in terms that if your mother has MS you have slightly higher chance of getting it.

I’m very glad you are now going to see a neuro and find out what’s going on.

Try not to feel down… especially now that you are going to see new neuro!

I think it must be so hard for you caring for your Mum. What a wonderful daughter you are.

Keep in mind that IF you have MS, it is different for everyone… even members of the same family. Your mother has been very badly affected by MS but that is actually very unusual. The chances are that if you have MS it will present very differently, with different symptoms and will not be as aggressive as your mother’s.

Take care and good luck with the new neuro,

Pat x

Hi Nicole, and welcome :slight_smile:

Great to hear that you’ve got a neurology referral - hopefully it won’t be too long in coming.

I just wanted to say that I agree with what Pat said about MS in different family members: the severity of a parent’s MS doesn’t seem to have any bearing on a child’s MS and it’s quite common for them to be different types too. So, IF you have MS, there is no reason why you won’t have a very much milder version than your mum’s.

That is a big IF though because there are all sorts of alternative causes of your symptoms, some of which are relatively easy to treat (e.g. vitamin deficiency). So, with any luck, it won’t be MS at all.

One tip: when you see the neurologist, you obviously need to tell him that your mum has MS, but it’s probably best not to compare your symptoms with her’s and dwell on any similarities. I would think that the key message is that you have all these symptoms and want to know what’s causing them; your mum having MS is a by the way rather than the reason you are there.

I hope you get some answers soon.

Karen x

Hi Nicole and all

I too am new to this forum and currently waiting for first appointment with neurologist and MRI.

Nicole - I wanted to say hello and I am sorry you are feeling so low. I also wanted to say that you are not on your own and, I don’t know if it will help, but I can so relate to much of what you write about especially feeling ridiculed and ignored re your health issues. I diagnosed with ME in 1998. My condition was not really looked into in much depth at the time and I had no neuroligcal testing or MRI, despite having some neurological symptoms - spasms, tingling.

I was feeling so unwell at the time it is all pretty much a blur but I do remember the doctor saying if I had any visual problems I must go back to him. I accepted his diagnosis because it was the doctor that I had been sent to by my work. But now I am seriously considering that it was the wrong diagnosis.

I have had many neurological symptoms since then and have battled with chronic fatigue, pain and weakness to a debilitating degree so that I have had to give up work on several occasions. I have also been diagnosed with bipolar disorder (2003) - I am interested if anyone knows about the link between bipolar and MS but will start another thread about this! - and two blood clotting disorders (2006). Along the way I have had strange unexplained medical incidents and I do feel that what with the ME diagnosis and a mental health disorder doctors always jump to conclusions without any real thought or consideration.

But the visual problem (along with new neurological symptoms) came on 4 weeks ago and I have been knocked for 6 by new symptoms along with some of the old and a full on dose of fatigue. I am now a single mum to a toddler so being able to rest when needed is extremely difficult. At the moment I am really struggling not to get low so do not feel alone in that. Keeping bright and cheerful so as not to upset my son is tiring in itself!! but even the simplest thing is being disrupted…I almost spilled a mug of hot tea all over him the other day as my hand had such a tremor; I can’t open a can to make his supper due to weakness and loss of sensation in my hand, and walk him to playgroup due to pain and fatigue and I have now been referred to a neurologist.

My fear is however that they will see ME ‘dianosis’ and mental health issues and not take me seriously. I have had to fight to get the referal already. Do you have any advice as to how to avoid this based on your experience?

Pat - I notice you too originally had dx of ME. What led you/docs from that dx to MS dx? Do you have any advice as to how to approach the neurologist appointment so that they don’t just see ME patient getting paranoid and actually listen to me?

Sorry this is so long Nicole, but please do keep in touch. I am so sorry that you and your Mum have been through so much, I will be thinking of you - when is the neurology appt? Good luck!! and hang in there,

Cat xx

Hi Cat,

When I saw my neuro for the first time I mentioned my ME diagnosis and to be honest he didn’t appear to know anything about ME. I’m not sure how much info they get from a referral or if they have access to medical records (and if they actually read them) so I would be tempted to just give them the symptoms you have been referred for and let them work it out themselves.

Mags xx.

Hi Mags, thanks for that, sounds like good advice. Hope you don’t mind me asking, do you have a dx of MS now? Hope you are feeling well at the moment either way x

Sorry Mags - just realised it was you posting above and that you do have MS, sorry, about the error! Hope you are ok at the moment though xx

I can not believe my doctor told me there was a new Nero Doctor Women Tablets - 30 starting a surgery very close to me, then when the form came to make an appointment it said I had a choice of Cheltenham, Oxford, or Swindon!!! She specifically said it was local to me, because of my agoraphobia and panic attacks … I have to call again tomorrow, it looks like there is no such clinic! I am gutted, maybe I should just kill myself now, I am obviously such a major strain on the NHS! Why will no one just tell what the hell is going on with me! Eeeeeeeeerrrrr I am so angry and upset!

Hi Nicole, is there a hospital closer than Cheltenham, Oxford or Swindon?

The thing is you have to see a neuro at a hospital because anywhere else won’t have the right equipment… ie MRI scanner.

IF there is a hospital closer, go back to you GP (or phone) and ask if there is a neuro at that hospital. Not all hospitals will have a neuro and again they might not have the right equipment.

Try to calm down hon. This isn’t a conspiracy against you… it’s just that they are trying to send you where it is best for you to be seen.

Take care… and start asking around for someone to go with you to the appointment when you get it.

Pat x

Hi Pat, I live rural, and we have a small cottage hospital the next town down, this is we’re they have so say opened a new Nero Center twice a month, and the Doctor said I would get in very quickly as he was not very busy yet because it was new! I found out this morning this is not so, there is one there but they are very busy, so I was told to book in at Swindon, and wait for it! I have to wait till 2/7/13 to go, in the mean time the booking clerk at the surgery is going to try and get my appointment moved to the local hospital. I realise they don’t have an MRI unit there but they never do it same day anyway, and I would have to go to the big hospital… The reason I am so cross is because I have been seeing her for eight years witht these symptoms, and although been sent to a Nero befor,I was told by him I was wasting his time! Now it’s starting all over again, and trust me, if you had been messed around by doctors since you we’re 14 to 41 you would be pretty peeved to :0( All they do I lie , misdiagnose and mess you around! It’s about time they concentrated less on how much money they can make by pushing as many patience through in one day, and listen to the patience needs! I notice that an appointment with the mental health team was quick to come through, to help me cope with my anxiety and panic disorder! All of witch I would not have if they did there job properly… Trust me my experience with doctors since I was young has been diabolical, and I have seen a few, as I have moved all round the country. It’s so hard not to feel down and bitter, when your in pain, fed up, and just living to go to endless hospital appointments that don’t seem to fix anything… I have been at this for years,mand there is nothing I don’t know about how it works, as I went through it with my Mum as well,mand I am not sure i have the fight left in me for myself, my hole life just seems to have been and endless mix of O.T’s , social workers, doctors, nurses, and endless red tape! :0( :0( :0(