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Looking for advice

Hi. I am brand new here. And I just want to state that I know a diagnosis needs to come from a doctor, it’s just that at this point I really feel that I am just grasping at straws. I’ve been in pain for so long now and have been basically told that it is all in my head for so long that sometimes I think that I am going crazy. I’ve read a few of your stories and threads and I think I would just like someone’s opinion who has actual experience. I mean in all honesty, I am just waiting for my cervical spine mri results to come into the neurologists office as we speak. Today an almost awareness that this is honestly the new me get used to it feeling came over me. Anways here’s why I feel this way. I apolagize if its a little long. I’ve been asking for help for over 4 years now. 4 years ago in the spring (for some reason every freaking spring everything gets worse and stays worse gah frustration!!), I was playing hopscotch with my daughter. As I went to jump on my right leg it collapsed under me. Weirdest feeling ever. This plagued me for like two years and happened all the time. But because it was never painful-just surprising, I never remembered to make an appt for it. A year later, spring, I had a full blown body rash that disappeared in a day and then my lymph nodes in my groin - on the collapsy leg side - all swelled. I could hardly walk. I had to drag myself across my floor in agony just to get my phone. That was my first hospital trip. They said I had twin hernias in my back. Larger on the side of the affected leg. I got to find out I wasn’t constipated and they sent me home on orders to rest and with some t3s. Two weeks later I got to go back to work. Still sore. But liveable. 1 large lymph node perma swollen. Still collapsy. I get over it and move on. 1 year later my leg stops collapsing yay! But I still have a large lymph node which I name Betty. Because shes staying I had a little bit here where I didnt hurt. I even left my office job and took a good phyical job cleaning with no problems for a bit. So at the end of summer 6 mos later after I noticed my leg was better, I smoked my head on an awning (it was low) and ended up having to get checked for a concussion. I was fine but the noticed in my ct scan that I had a old neck injury. (Ive whacked my head a few times good and had a lower lumbar injury at 17 that required physio for proper walking and pain so im no stranger to back pain already) not a problem. I go on. 2 mos later I started getting electric shocks. They werent crazy bad. Oh man did I think they were then though. My leg (oh yeppers collapsy) lost some movement. I noticed that that leg would bend down if I sat cross legged. It dragged a little. And my hip ached. I went to the doc. He did an exam and ordered an ultrasound and xray of the area. They didnt see anything but the beginnings of what will one day be arthritis in that collapsy side. He ordered blood tests and urine and all good. Im pretty sure he put me an nsaid here. 6 months later everythings worse. I had already left work at this point. It was spring. The electric shocks were so bad I had to stop moving and just hold onto what ever was nearest to me. It felt like someone had taken a taser and shoved it where it shouldnt go and it would just lap around my hip and groin spiking up my lower spine and collapsy. Collapsy decided she didnt want to work well at all here and I have been left with a pronounced limp which I still have. I also lost the abilty to flex that leg outwards almost completly. Never the left. A couple mobths later my doc put me on percs for the pain. My world like literally imploded here. I was exhausted 24/7. I hardly had the energy to eat. Expect if I took a perc. I could move, visit, walk(not well but without pain for the most part). He ordered a lower lumbar mri which showed my injury from when I was 17 but nothing really to speak of. So he couldnt understand why I was like this and started to tell me this quite bluntly. I left him. Found a new doctor who immediatly took me off percs Yay! And put me on lyrica. For some reason for a bit it got better. Minus the limp and movement stuff. The shocks came back a couple months later so we tried another thing which did nothing. I cant remember the name of it. He put me in touch with a neurologist. Just this past nov I had my first brain mri which came back clean. Dec was a neck and upper Mri. They called me a week or so later and requested I have a redo which was jan 31. When I got there they told me it was a cervical with dye mri. The person who put the dye in said they were looking for lesions. Que 3 4 days ago. I slowly start to notice my chest on my left is hurting. I had a swollen lymph node here at some point throughout a shocking period and I did have it checked-all good. The pain gradually gets worse and worse. And it feels like someone just bear hugged me from the side and let go. Like the right after the hug feeling but way more intense and continual. So a walkin sent me to the hospital. Spacey chest and exhausted. Hospital says my heart is fine but the doc notices lumps in my armpit and that my axilla is swollen left side. It turns out I have cysts which happens. But the feeling of the pressure is intense. It hasnt let up yet. And sometimes its worse and soemtimes its not bad but there. My lungs are clear. I am so exhausted I can hardly hold a conversation. Collapsy is starting her shocking tricks again but omg. I called the neuro today and asked if results were in. They said not yet. Sometime this week or so I should expect a call. The doctor that started the process with the neuro actually asked me to go to a new doc office that had mental health because he feels I have high anxiety and thats why this is all happening. Am I crazy? I have visited the hosp and had appts galore for years now. Is there any advice anyone can give me because I just dont know what to do or think anymore. Thankyou in advance. And I so apolagize for the length.

Hi,

I don’t think you are crazy. You have written a comprehensive account of your problems. It was a smart move to switch your GP and you should be pleased that the neurologist is taking you seriously. I think you would agree that you’re anxious and it’s a good idea to treat that, but as a separate issue to the physical symptoms. Anyone would have anxiety after four years of your history.

It’s only been a couple of weeks since the MRI with dye so it’ll be a while before that is analysed. It takes a neurologist in consultation with a neuro-radiologist to interpret these images. As you said, nobody here can make a diagnosis from your post but I can understand what you are going through and I hope you get answers soon.

Please come back and let us know how you get on, you’ll always get a sympathetic hearing on this Forum.

Best wishes,

Anthony

Thankyou so much for your words :). I am definitely working on treating anxiety as well. I know that is a struggle I definitely do have, however I do believe all of these other things have magnified it greatly. I had someone ask me if I was a hypochondriac yesterday and I just wanted to cry. I think thats why I reached out.

hi silent rain

don’t let all this stress you out.

stress just makes everything worse.

wait as patiently as you can for the results of your mri.

meanwhile kick back and have a box set to hand, a bottle of gin, some smelly cheese, chocolate, whatever floats your boat.

this is the calm before the storm so make the most of it.

hypochondriac is such an abusive term, it should be removed from the english language at once.

carole x

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