Hi,
I am a bit lost and need a bit of guidance. I have been sick since I was 18, not through an actual disease, I was infected by a non sterile needle used in a lumbar puncture and it destroyed my discs in my spine causing a lot of never damage…or so I thought. I’m starting to reconsider now. Not only have I been diagnosed with a spine disease but I have also been diagnosed with chronic RLS, ME, Hip bursitis, Fibromyalgia and other stuff. The problem I have is that I don’t think I have any of this, I think I have an autoimmune condition. I have way too many symptoms to list, here are a few
Headaches with zapping pains in neck and back of head as well as in the eyes
Vision problems (worn glasses since I was 16 and my vision is getting very bad) I get rainbow static in my peripheral and a fun new symptom I swear that some dark shadow is moving in my peripheral as well(u have no idea the amount of times I’ve freaked out because I thought a big black spider was on me) I keep mistaking inanimate objects for the dog or cat because that’s how I see it out of my side vision.
Severe Restless Legs which feel like thousands of bugs in my calf as well as the overwhelming need to stretch my legs to the point I pull muscles
Stumbling
Pins and needles in legs and hands
Pain all over in joints not just my back and hips
Feeling of warm water running down my legs (embarrassing in public when you think you just peed yourself)
SEVERE FATIGUE! And I mean severe. I have days where it feels like I’m trapped in drying cement and as the day goes on it sets harder and harder, I don’t even have the energy to follow a simple TV programme, but sleep is impossible because of the RLS…It kicks in the minute I start to relax
Swollen and sore lymph nodes, mostly in elbow creases, back of neck, behind ears and around clavical.
Very fast resting heart rate (my normal heart rate is around 99-103bpm at resting, but it’s been like this for years and no one has ever seemed bothered at all) I also get the feeling of my heart skipping a beat every now and again
General everyday feeling of being unwell, I haven’t felt good for a long time.
I also have chronic anemia, no matter what I take it doesn’t get better, just worse. Had my results for a test today my haemoglobin should be between 11-13 mine is 9 and my iron should be between 9-11 mine was 3. My GP is sort of helping, gotta have an ultrasound on the girly parts to make sure nothing weird going on in there, but yet another course of iron tablets.
I went to neuro with my concerns a few years ago (my vision problems, headaches and the RLS hadnt been anywhere near as bad then) she was the one who said I had ME. She did a physical exam, but thats it. She said she would get me an MRI but because I have a spinal cord stimulator the machine has to be calibrated and where I live there is only one person who can do it at one of the local hospitals. I was supposed to get an appt with this person, but that never happened.
What my very long post is basically about is 2 fold? People already diagnosed would you say my symptoms line up? And also whether you think they do or not, how do I go to my GP and get the tests I need to see if I have the inflammatory markers for autoimmune? I’m seriously considering buying one of those 23 and me tests to see what my genes say because something is going on and it’s progressing now, and I cannot afford to wait for the snail paced NHS, I have 3 kids who need me.
Thanks for reading and thanks for your help.
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Sorry to hear your having a ruff time . Tbh i would try and see your GP or a nurolgist and get that MRI … if possible…iv had bad RLS for years was one of my first symtoms at the start . Its a autoamune. defo try and get some help advice and support. Hope you feel better soon …