Undiagnosed and desperate! 21 with MS type symptoms
This is my first ever post. I don't even know where to start. As the title indicates I am undiagnosed and absolutely desperate. I basically went to bed one night and woke up the next day disabled. I woke up aching all over, in severe pain and my legs didn't feel right at all. When I tried to walk I found I struggled even to shuffle and the pain was unreal, with my right leg much weaker than the left, almost giving out with every step. Over the 3 days following this got worse until I couldn't even stagger short distances without falling and hurting myself. The doctor first instructed me to keep trying to walk as he suspected I had pulled a few muscles (???!), after another day I was so desperate I went for a second opinion and was immediately admitted to hospital.
Something very similar occurred in November 2010, I literally went to bed and woke up the next morning with completely altered sensation in my legs and I was unable to walk or move them properly. I became wheelchair bound but was never diagnosed. I went for MRI scans and nerve conduction tests (around 6 months after the event) which came back showing no abnormalities. With extensive hydro-therapy and physiotherapy I gradually regained the use of my legs although the sensation never really went back to normal. I was wheelchair bound for roughly 7-8 months and spent 2 months using walking aids.
I was upwardly mobile until Nov 2012 when this happened again. This time however is most definitely not the same as the first time although the initial onset was the same. I am once again wheelchair bound and my walking ability or lack thereof is very similar to last time. I fall multiple times daily, often injuring myself. I am constantly exhausted regardless of how much sleep I have. This time however I am experiencing a wide range of additional symptoms which I never experienced last time.
Last time all the pain was in my legs, hips and back. This time however it seems to be my whole body although the pain is definitely much more severe in my legs, hips and back. I also began twitching and jerking violently around 5 weeks after these symptoms first began. This happened once, a doctor, came to the house and sedated me and I began to take Diazepam daily. I'd still twitch and jerk but not so violently and not so constantly. 10 days later it began to become more violent again and much more consistent and constant and has stayed the same now for roughly 5 weeks. The jerking is so violent sometimes it looks as though I am having a seizure although I am perfectly conscious and aware. Other times it looks as though I have some form of tourettes syndrome. It affects my entire body. I never have verbal tics only motor tics. Obviously this causes an incredibly high level of pain and means that I have lost most of my independence. I am unable to self propel my wheelchair, am unable to prepare a meal or even a cup of coffee. I have scalded myself numerous times and am also even less able to move around as the jerking makes it impossible to grip walking aids.
Other symptoms I am experiencing which I did not experience last time include sudden nosebleeds and migraines, difficulty swallowing occasionally, palpitations and throbbing and sharp stabbing pains all over my body. I do not experience the need to urinate until I am absolute desperate and often do not urinate for up to 48 hours. I get pins and needles in my hands as well as my feet and legs. And the sensation in my legs especially is nothing like it should be. Even the slightest brush is painful and the best way to describe it is to explain it as an unbearable burning sensation.
I have no diagnosis as of yet. The last consultant I saw has told me I definitely need MRI and CT scans as well as a lumbar puncture but as I am unable to stay still (due to the jerking) they can not administer the tests. They have advised me to be patient and do my best to adjust but how can I adjust to something so unpredictable, I never know what to expect from one day to the next. I have been told so many different things. Some consultants have advised me that they believe this is MS, others have said they are completely clueless and the last consultant I saw told me this could be somatisation/conversion disorder or other neuro-psychiatric problem.
I have been referred to a movement disorder clinic comprising both a neuro-psychiatrist and neurologist but have been told that the waiting list is so long they are unable to offer me an appointment until AFTER February 2014. I have never been so desperate/frustrated/angry in all my life. I feel like my life is on hold. I have no independence and rely heavily on my Mum who acts as my carer. I rarely leave the house as I find the experience so exhausting/distressing/embarrassing.
Has anyone experienced anything similar???... Please share your experiences, give me some advice, advice on how to cope, who to talk to, what helped you?? I've never felt so alone and so isolated and would love to talk to anyone who understands.