This is my first post here so hope I’ve posted correctly. Currently feeling very anxious about symptoms that my 14 year old daughter is having and showing no signs of improvement. Any advice would be greatly appreciated. Her situation is that in January 2018 over a weekend felt slightly unwell, nausea and headache but no sickness. In school on the Monday, I had a call to come for her as she felt her legs were going to give way under her. She described pain and heaviness mainly in one leg but was saying it’s not like pain, its tingly and numb but still sore, in addition she was back and fore to toilet constantly and needing to urinate all the time despite not drinking excessively. She found it hard to walk as she felt like she was walking on stones and was unable to walk very far. She had continuing headaches. I took her to GP twice within the following week, was told it was viral, then possibly a pinched nerve (she had not done anything to cause injury). After several weeks her symptoms had not improved so back to GP and had bloods taken, all negative. After several months of GP visits we got a neurology referral. During this time her symptoms have been variable but never gone away. Both legs are now affected with tingling, numbness, sensitivity to touch, constant headaches, a feeling her bladder is always full, walking on stones, occasional tingling on side of face and both hands. She is completely exhausted and on bad days can sleep off and on for most of the day but still be tired. She is on a reduced timetable at school which she struggles to cope with and many days does not feel able to go to school. She has had to give up her evening job and after school activities and her life has totally changed from the bubbly, busy, outgoing teenager she was before this hit in January. Have had neurology appointment this week where her history was taken and exam carried out for reflexes, strength, checking sensation with tuning fork and pins. The neurologist said based on her exam she was referring her for urgent MRI as she feels there is an interruption somewhere between brain sending messages to spinal cord. She said she was looking for inflammation in brain and spinal cord. What does this mean? Any advice re symptoms?Anything to help? Does this sound like MS symptoms from people’s experience?I’m so worried and feel so helpless. I realise this is a long post, thankyou for reading.
You must be so worried. What a lot of symptoms for your daughter to have.
Obviously the neurologist has taken the symptoms very seriously and referred her for an MRI. Hopefully this will a) happen very soon and b) be reported on speedily. I truly hope you and your daughter get some answers ASAP.
MS in childhood is pretty rare, although it can happen.
Theres basically no useful advice I can give you before you get the results of the MRI.
Except to manage your daughters fatigue levels as well as you can. Which I think you are doing automatically. The idea behind fatigue management is to do tasks gradually. So, for example, her school are helping out by giving her a reduced timetable. The problem with this is if she goes to school for a full day, then has to have a 2 hour sleep after school everyday, it’s not ideal. So maybe work with the school on making it so she only has to attend the most essential lessons,and cutting down her homework, while not making it impossible for her to keep up with girls her age.
Equally, she’ll want to keep her friendships, so it’s a case of allowing her to use some energy on friends, while not overdoing things.
I really hope she’s not diagnosed with anything life changing. But if she is diagnosed with MS, it’s not the worst of all diagnoses. Now that we have effective disease modifying drugs (DMDs) she could well be put on some drugs that minimise the effect MS might otherwise have.
Best of luck to you and your daughter.
Many thanks for your reply Sue. Really good point about keeping some energy for friendship time too as it’s so important for her at 14. School have been really good and she’s able to attend just the classes she’s doing exams in next year. My mum has MS but has been mainly symptom free for a number of years now thankfully. She was diagnosed in the 80’s. My daughter has some of the symptoms she has had but also additional ones so wanted to see if anyone had similar to my daughter with so many areas of her body affected and the relentless fatigue. Was told MRI should be within a few weeks. Thankyou for advice and support.
I second everything Sue has said, and just want to add my good wishes to you and your daughter. I am sorry that you are having such a worrying time, and I hope that it doesn’t take too long to find out what is the matter.
Thank you. This no mans land pre diagnosis is a horrible place. Appreciate your reply and support x