Hi, and Welcome! I'm sorry you're feeling badly...Somehow, you need to find a neurologist who will order the right exams for you - MRIs of the brain, C-spine and T-spine, with and w/o contrast, done on a 3T magnet, and perform a thorough neurological examination, and LISTEN to your history, carefully.
MRIs will suss out either lesions in the brain or spinal column, or bulging discs that protrude into the spinal column, or other possibilities.
In the mean time, have a look at our Health Pages (links on right side of page). And keep in touch - let us know what happens next!
Cheers,
Lisa
Sounds neurological to me, but assuming it's fibro may be jumping the gun. Lots of different neurological diseases come with tight muscle spasms and balance issues.
You say you've been diagnosed with dyspraxia, which is one of those umbrella diagnoses when they can't figure out what's wrong. I'm surprised the doctor isn't willing to research your symptoms further. What sort of options do you have in the UK for finding a neurologist? I'm concerned that you could be progressing with whatever disease this is, without being treated.
It sounds like fibromyalgia. In Canada, a rheumatologist does the diagnosis, although a neurologist can also diagnose. I have had FM for 12 years and one of the top neurologist in Canada said I have severe FM. I originally was diagnosed by a rheumatologist and last March went to this neurologist in another city to get a second opinion as he's linked to the recent research.
It is a disease of the nervous system. I get all the symptoms you have listed. It is a clinical diagnosis as there is no blood test for it. I cannot walk a straight line without falling over, and often bump into door frames. I do slur my words often and hallucinate rarely. The tight painful feeling is neuropathic pain, sometimes it burns. My FM started slowing, it started in the legs as you describe and eventually moved to every part of my body within 6 months. With severe FM, you get the speech slurring, weak voice, and balance problems. They don't know what causes it but some researchers think it is a virus that has attacked the nervous system. I used to get muscle spasms in the beginning, but now take Magnesium Malate which has cleared them up, the spasms and jerks are caused by a magnesium deficiency which happens with severe FM.
With the Tramadol, that is the drug of choice for helping FM sufferers get a restorative sleep. There are other medications for neuropathic pain, but it depends on how you deal with it. Usually they do refer to a psychiatrist or psychologist for Cognitive Behaviour Therapy to help deal with all the various symptoms.
I can help you walk you through what I've experienced, but would recommend you get a diagnosis first. I fell ill at 40 at the top of my game, raising an 11 year old son, 1 hour a day weight lifting, 1 hour walking dogs, full time job as IT system administrator lead, and an internet job authoring software questions. Within 6 months I go barely work a full day. As of last summer, I went on full time disability with my work and unless research finds an answer, I'll be on medical retirement next year as my insurance on lasts 2.
I empathize with the frustration of not knowing. If is FM, I can certainly help with what has worked for me. I'm very analytical and have done lots of research on my own, as well as trying different natural modalities. I've given up largely on medication as the side effects caught up with me being ill for so many years. With severe FM, there is no cure, just management of the symptoms. Some have claimed to have cured it, but I suspect they did not have FM. FM stats in Canada are about 6 percent of the population. I read one article where a doctor thinks it is going to be the next polio. When polio first appeared, they thought kids were making it up to get out of school. There is also a school of thought where some think they have Lyme Disease, which I think is erroneous is many cases. Gulf War Illness also has similar symptoms. Bottom line is the research just isn't there yet.
Take care and keep in touch. There's a really great doctor in the UK, Dr. Sarah Myhill. Here's her site http://drmyhill.co.uk/wiki/Main_Page. It is predominately for Chronic Fatigue Syndrome; however recent research is showing CSF and FM are the same disease, it just depends on one's genetic makeup what end of the spectrum one falls. I personally was very healthy when I fell ill so I didn't get the flu like symptoms of CFS, but now after 12 years, I'm very fatigued. On good days, I'm lucky to have 2 hours off of the couch. But I'm working on natural supplements to help get my energy back. A lot of problem is that I developed hypotension last year, another symptom of FM.
I could blather on for many pages, but this hopefully gives you the gist of it. I hope it is not too discouraging. Better to be enlightened than in the dark has always been my philosophy.
Laura
I'm so sorry you're going through all this. I totally understand doctors not listening. I finally found one that would and was diagnosed last November. My primary physician told me that I needed to get a job so that I had other things to do than worry about my symptoms. Took me a few years to get over that, but I finally decided to find someone new.
Have you asked you psychologist to recommend someone to you? A call to your doctor from him/her might be helpful as well. I also had to take my husband in with me so that he could back me up that something serious was going on and I wasn't going to be "blown off" anymore.
There are a lot of things that mimic MS, but you need to find someone willing to check for those things. You are your own best advocate so please do your best to take care of you.
Best wishes!
Chris