I’ve been browsing this site for a few weeks now looking for reassurance regarding the symptoms I am experiencing.
I had quite a scary experience today and I am wondering if anyone can relate to it or offer any words of encouragement.
I have suffered with fatigue and urinary problems for around 4 years now. In the past I have been tested for diabetes, thyroid issues, ovarian cancer and pretty much every blood test going, nothing in the past has ever been picked up. I have also suffered with lower back pain and pains around my ribs. It always feels as though I can only breathe in around half way and then it becomes very painful and I sometimes get a sharp stabbing pain in my chest with it.
More recently I have had strange sensations in my legs and arms and feelings at the top of my back that feel like trapped nerves. I spoke to the doctor about this and was sent for an X-ray of my spine. It came back that I have mild scoliosis of the upper spine, reverse cervical lordosis in the neck and lumbar lordosis. I have also been diagnosed with Long QT of the heart this year and I am being treat for a Vitamin D deficiency. I also have problems with concentration and my short term memory.
I am awaiting an MRI of the brain to rule out MS and an appointment with the bladder clinic. However, this morning it felt like I couldn’t get my urine out. The doctor called me in to drop off a urine sample and when I was walking across the car park to the surgery it felt as though my legs didn’t want to work, it felt like I was wading through water, and I could barely speak or stand up by the time I got to the receptionist. My arm was shaking a lot also. She rang straight through to the doctor who by the time he got to me said it’s likely that I had a panic attack. He tested my urine and sent it off to the hospital as it had white blood cells and blood in it. He’s put me on antibiotics just in case it’s an infection.
I kind of feel as though I am going mad as it was only a couple of weeks ago the doctor tried to put me on anti depressants and refer me to a chronic fatigue clinic and then changed his mind and referred me for an MRI. Now another doctor is saying I had a panic attack.
I am just a bit scared following the experience I had today and wondered if it has happened to anyone on here?
Urinary infections can certainly make you feel strange, weak and wobbly.
You say you are being treated for Vitamin D deficiency. Vitamin D deficiency is well known for causing a whole array of strange symptoms, and can often be misdiagnosed as anxiety / depression / medically unexplained symptoms (although it is clearly explained as it is Vit D deficiency).
Magnesium deficiency is well known for causing anxiety and panic attacks, As you have recently been diagnosed with long QT, it might be an idea to ask you doctor about the role of magnesium, as it might be connected.
Thanks for your reply Ziola!
Thw urine sample came back from the hospital as being clear from infection so that was good! I’m still taking Vit D so I’m hoping on my retest that I am back to where I need to be with that.
Since I originally posted I have had more seizures which the hospital have said are myoclonic seizures and have started with some tremors in my fingers and wrists. I am also getting ringing in my ears on and off and feel off balance a lot of the time. Also the muscles in my upper legs, arms, back and ribs are tender.
I had an MRI of my brain, neck and upper spine on Friday so I am hoping to get my results back soon. I had started to suspect that I might have MS, the doctor agreed but also mentioned wanting to rule out any ‘lumps and bumps’ in there too. Those were his words. I suppose that sounds nicer than what he actually means by that!
I just thought I would update as I’m sure there will be others out there who are worried and are suffering in the same way that I am and hopefully if things come back clear this can be a message of hope to others!
If you find it hard to keep still, ask for a wedge under your knees, the lovely radiologist noticed that I was struggling and brought me a foam wedge which was brilliant.
I was wondering if anyone on this site had to stop driving before they had a diagnosis. My doctor has signed me off work for a month stating neurological symptoms and has told me I shouldn’t be driving due to the myoclonic seizures. I am a carer in the community and drive a lot for my job.
I would be interested to hear from anyone who has had seizures and what happened with their driving license etc?
I’ve not had seizures. However if your doctor has advised you should not be driving then you should stop driving. It feels really brutal, when your work requires you to drive. But at least you are signed off from work for a month, which gives you a little breathing space.
For the moment as you do not have a diagnosis, I don’t think you need to inform the DVLA, provided you are not driving. If you want to continue driving then you must inform them. If you had an accident whether due to a seizure or not, and not informed your insurance company then you’re likely to find your insurance is not valid, and put you in deep trouble … The DVLA will not allow someone to drive if they have a condition which may mean there is a known risk they could lose control of the car with little warning.
I hope the MRI scan can shed useful light on what is causing your symptoms, so you have a better idea of what you can expect, what treatments there may be, and that you get the results through quickly.
Carers are in huge demand though, and also the wider care industry. You must have many transferable skills. Maybe use the month signed off work to start to think through some possible options, if you can’t drive, but do allow yourself lots of time to relax over Christmas and help yourself to keep as well as possible, as that should be the first priority!
Thankyou Ziola! Thankyou so much for your reply! I thought I would update as I know that there may be people that stumble upon this post that have similar symptoms and it’s always frustrating when the outcome isn’t also mentioned (well I have felt that anyway haha).
So my MRI has shown that I have a brain condition which is known as a Chiari Malformation. I have never heard of this and never come across it in all of the recent googling I have been doing!!
things are being rushed through as I completely blacked out yesterday and hit my head. I hope I can find some sort of forum that’s been as helpful as this one. I wish everyone a happy Christmas and better 2021!
Glad you are over the first hurdle and now have a diagnosis, and that the doctors are moving quickly on it. Wishing you all the best for your treatment stage, and, if you need surgery that it all runs smoothly. It will be a worrying time for you though, so I hope you find a good supportive forum who can help answer your questions.
Very thoughtful of you taking time to let us know the outcome of your MRI, and helping to inform others. Wishing you a happy Christmas too, and hoping that 2021 sees you back into better health.