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18yr daughter, at breaking point with symptoms, no diagnosis

Hi, I’m feeling disparate today. My daughter has been having an array of strange and new symptoms for a long time now. 2yrs SHO she had a bad episode where she lost her balance/coordination and had tremors in her whole body. A&e suspected meningitis but all clear on that. Put down as viral, but took a good while to recover. Then this year she has been getting tired more, she has lost 2stone in a year aprox in weight that leaves her looking very frail. She was going exams and stress was suggested. But quickly test was rejected as she is seeing a clinical psychologist for an unrelated matter and she agrees she manages life very well with excellent techniques to combat anxiety and stress. She took a very bad case of vertigo nearly 3 mths ago that is still there. She is on stemitel which is helping but not taking away her poor balance. She walks with a very wide gait now to balance herself. She gets dizzy spells Aldo within the vertigo. She doesnt do things on her own now. She has changed so much…it’s liked the fizz in her is gone. She is tired a lot more. Her left arm tingles a lot, feels like she slept funny on it but it doesn’t go away. Her legs can feel lime they just buckle. She has pins and needles tingling in her legs. She has intermittent vision problems where things are hard to read with the vertigo. She is so scared and just as she finishes school. She knows her body is not right and had googled responsibly. Every time we get the same answer, it leads us to ms symptoms. She has been to a very supportive gp. Had an MRI in a&E that was reported clear. She had X-rays done. She has attended a&e twice in the hope of answers. We now get the chance, by way of a lot of planning and help, to meet a neurologist she was referred to this Monday. We are worn out. She is loosing hope a little and so scared it’s not viral. I am so worried watching her change so fast in front of me. She needs answers. She is becoming so dependent on me where she once was so full of life and independent. I’m lost, as is she. Any good advice on what to plan for meeting with neurologist. We are going to sit down together and put in writing in bullet point what is happening to give to the neurologist on the day. She is scared of getting no answers on Monday. She cannot take a summer job due to her body not being able for it physically and she is worried she will be unable for transport to and college life itself. She is exhausted. I’ve rambled a bit but needed to get it out. What to do? She has said herself, based on what she knows now, that she wouldn’t be surprised if they go down ms route of diagnosis. She is a positive and vibrant young lady who needs answers to what is happening her body and even her mind, which gets so tired also.

I keep banging on about this, but it keeps on being true: Dr Google is a terrible diagnostician. Which doesn’t mean that he isn’t sometimes right, but he is VERY often wrong. That is because MS causes such a wide range of symptoms that almost anyone with strange stuff going on who starts googling finds that (according to Dr G) all roads lead to MS. All roads do not lead to MS.

That is always reassuring news.

That sounds perfect. The only other thing I would suggest is that you and your daughter go in with a completely open mind. You do not know what it amiss yet. I know you are concerned about hte possibility of MS, but try not to leap to conclusions. Let the neurologist do his/her job.

I am sorry to say that it is very likely that it will take a little longer to get to the bottom of things. Please try yourself, and try to encourage your daughter, to pace yourselves emotionally. It is often slow work, finding out for sure what is amiss. That is very hard at any age, I know. And maybe even harder for the parent. Probably even harder for the parent.

Good luck to you both. I hope that the neurology consultation gives you some confidence that you are on the way to finding out what is wrong.

Alison

Thank you for your very practical supportive comments Alison. I know the old google can be a very dangerous tool if used wrong. I suppose what I meant is we have looked up medical sites that our gp would recommend as good, reliable sites-not just random googling. Her GP is concerned,as in her opinion, she wouldn’t see my daughter as the same girl she knew before the latest changes in the last few months. I know patience is important yet at the same time she is 18, unable to walk short distances on her own now, very restricted by not being physically able to take a part-time job etc- things that are usual for most 18yr olds. She also won’t drink alcohol now (she only had 1 drink on a night out, not a big drinker at all) as she is afraid of how she might be perceived if she has a drink coupled with her existing balance issues & walking very slow and with a wide gait to try to keep her balance. It was our GP who is very concerned regarding her symptoms. We are very aware that all symptoms do not lead to MS but I suppose we are trying to have an open mind, educating ourselves along the way responsibly so we can rule out things also. I appreciate this is a MS support forum but I posted in this section as it’s ‘before diagnosis’ so I can educate myself as well as vent a little. We are both wanting to stay positive and calm along the way of getting answers. Life is literally on hold for my daughter as she yearns for her independence back and to plan her travels at what should be the most exciting time of her life. She jokes that she should be planing trips to India, Australia etc, not trying to work out how to get to a music gig in Dublin without mishap. She has her wicked sense of humour along with the tears and frustrations. I’m grateful for good sites like this one which give excellent information on MS early symptoms etc and at the very least allow us to access correct & reliable information. We will ask lots of questions I know on Monday and we also know not to expect an immediate answer as if it was that easy we’d know by now after the last few months.

Hi Angels, Only got a short time to write this post so hope I can communicate what I am saying well enough. In my job, I work with adults and young adults with stress and anxiety. I am not about to suggest any of these symptoms are caused by that. But what I do know is that whenever somebody is suffering with any kind of health issue, Dxed or not, it does create an awful lot of stress and anxiety for them and their loved ones. One of the most common results of this kind of stress is that people begin to become fearful of doing things, not arranging stuff in case they are not able to cope etc. etc. this creates a bit of a vicious cycle cos it’s these things which help us to cope with the tough stuff. It also means that the illness/symptoms become a greater proportion of their life. The analogy. I use with my clients is this: life is like sailing along on a lake. There are rocks and obstacles which can cause us great difficulty if the water level is too low, but if the water level is high we can sail right over them (or at least there are less of them and we can navigate them more easily) - the water in this analogy are those good things in our life - things we enjoy, spending positive time with people we enjoy, hobbies, laughter, etc. etc. While I understand how difficult it is (believe me, I have been in limbo with neuro symptoms since 2010, and about MS since December last year). Try and prepare yourself for a period of uncertainty, try to encourage your daughter not to put life on hold, and to focus on what she can do, rather than what she can’t. Whatever the outcome of the neuro appt, you have all been living with this for a couple of years and even answers were to be forthcoming quickly, they may not change things, so working out how to make life better now, and taking each day as it comes - alongside doing what you can to find out why, is the best advice I can give you (along with agreeing with Alison, let the neurologist do their job). I really hope you both get the answers you need, and a way of resolving these symptoms… Leah :slight_smile: