Sick to death of no one listening
Posted , 6 users are following.
It's been over 3years now that I've had these symptoms. It felt like I got sick of Christmas 2012 with a nasty virus and never really recovered. Feeling worse and worse as time went on.
I had all the tests under the sun, Glandular Fever, Liver Function, underactive thyroid, all the vitamin tests, etc etc. Bloods after bloods after bloods. Till one came back positive for a severe vitamin D deficiency. My doc was like, yup! Thats it! Take these pills. Needless to say they have done zip for my symptoms.
When they started years ago, it was mainly horrendous extreme fatigue, migraines, and lower and mid back pain. Then it went on to restless twitchy limbs, nasty muscle pain, brain fog, poor short term memory, blurry vision, pains behind same eye, an eclection of migraines. And all the while my back hurting more and more until sleep became a distant memory. I'd literally be up crying with the pain. I can pull a muscle just by looking at it. I have tingling and numbness in my fingertips that lasts all day. Painful muscles and joints. Not to mention the dizziness and generally running on zero energy. Sometimes it's an effort to breathe. My concentration has left me too. Just writing this is taking great effort. My brain gets fuzzy and I literally just lay down and lose a couple of hours to fuzziness.
My Dr sent me to a Rheumatologist this year. After two appointments of him not really listening to me, he decided I have CFS and Fibromyalgia. Joy!
He said my bloods and liver scan show its not Lupus or MS?! Which confused me. Didn't know you could tell these things from just bloodtests!?
Now I'm waiting to hear back from a pain team, a therapist and a physiotherapist.
I've read up on CFS and Fibro and can't say I relate to many of the symptoms. A friend who's mother had MS suggested it and alarm bells started to ring. Things started to fall in to place. I was nodding and crying at everything I read. In a oddly comforting kind of way. Finally something made sense. But yet I've been diagnosed and my Dr and rheumatologist have closed the book on me.
Making a nice easy diagnosis.
So anyway, after a routine eye appointment beginning of this month, my optometrist found that my optic nerve (behind the eye I have issues in) was swollen. So finally I get sent for a CT scan. Everything's fine. They send me away with new painkillers (I'm already on Diazapam, Tramadol, cocodamol, Amyltriptaline, Oh and D3s. For the deficiency) But he does refer me for an MRI and LP. Which I'm currently waiting for...
I hate how whatever this is has changed me, I'm so used to being in pain all the time, it scares me. I can't work anymore, I can barely socialise, my mood swings suck, my personality is being killed of by the day and generally. I'm sick of feeling so horrendous. Every. Single. Day.
I'm not sure now if I've come here for a moan, support or ideas. Haha. I guess it's just nice to feel someone, somewhere can hear me...
0 likes, 18 replies
Can0814 BubbaWolf
Posted
I'm sorry to hear all you've been through! Get the LP and MRI for sure. Those are the best tests to diagnose MS. There is no blood test for MS. If you don't like your neurologist find another. Doctors are like everyone else... Some are not great at their jobs. I hope you get answers!!!! Not knowing what's going on is the worst feeling! I'm currently waiting on LP results. Numbness of right leg, low back pain, dizzy, off balance, muscle twitching. I also had an acute attack a year ago and never fully recovered.
BubbaWolf Can0814
Posted
Thank you. I didn't think there was. I'm so used to being fobbed off tho. I kinda just smile and say thanks for you're help. Despite no one actually helping me!! Thanks. That's all I really want is answers. Someone to listen to me. No, someone to hear what I'm saying and want to help me. I don't think I'm asking to much. Sorry to hear of your woes. They all suck for sure!
Treezie BubbaWolf
Posted
Oh, you poor dear! I remember the feeling that no one believed me: reducing me to tears, too. When I finally had my MRI and got a call to go down to the MS Clinic, I was elated (my boss said to me, "you almost seem excited"
. Well, yes, having an answer finally made me feel vindicated! Numb, buzzing fingertips and toes, but no frostbite finally would have a name. But it didn't stop me from having a big bawl after my official dx! My symptoms started after a winter camping trip, receded for a while and then came back years later--10 years before I finally got referred to an MS clinic at all. After reading various health websites--I found out that lots of people have a vitamin D deficiency without being dx'd with MS, because Vitamin D is not easy to absorb.
So, now you are being heard!
BubbaWolf Treezie
Posted
Thank you so much. That was very sweet. Brought a little tear to my eye. Its just the frustration of everything taking so long and no one really listening/caring. I feel like all of the professionals I've seen are happy to just write me off. Like they can't be bothered to look in to any other possibilities. Its utterly disheartening. I rad so many people's posts and see that its taken 5+, 10+ or even 15+ years to be diagnosed. That's shocking. Not to mention utterly depressing. I'd just like to feel better. Just a bit. Just to feel more like the old me. Is that too much to ask?!
I hope you're well tho. Thank you again for the lovely message ?
david66747 BubbaWolf
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Treezie david66747
Posted
david66747 Treezie
Posted
Sometimes we have to repeat this few times , sometimes only once is enough.
david66747 BubbaWolf
Posted
Try this. You don't have anything to lose.
You give me a time of day or night that you can seat in a quite place for about 20 minutes. Close your eyes. That is all. And later you can tell me what type of feeling or sensation you experience during felt during this 20 minutes.
Sometimes we have to repeat this few times , sometimes only once is enough.
Treezie david66747
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david66747 Treezie
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BubbaWolf
Posted
I already meditate. I'm a Buddhist. 😊
david66747 BubbaWolf
Posted
This is not meditation. I don't do it myself, I just connect you to it. The rest is done automatically. The reason I dropped a note in this message board is the fact that it works well for people with MS.
Again you have nothing to lose.
jadon26726 BubbaWolf
Posted
david66747 jadon26726
Posted
Doctors in west coast know nothing about Lyme disease. However in new york , Connecticut and Massachusetts doctors are very familiar with it. In east coast there are thousands of clinics that can help control the Lyme disease.
Once it gets up to the brain it starts alter patient's personality and behavior . Usually after that patient commits suicide.
That is why is very important to other family members to take control of treatment, and decision makings, because patient doesn't care any more .
I lost a friend to Lyme disease .
My friend and neighbor Dr. Chuy Valadez can give you lots of info. He practices in Irvine, ca . He is very helpful.
Also if you want to try my holistic treatment , I can help you. Non evasive and is free.
BubbaWolf david66747
Posted
No thank you David. I'll wait for the rest of my test results before seeking further help. But thank you anyway.
BubbaWolf jadon26726
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jadon26726 david66747
Posted
We live in North Carolina so the doctors here have absolutely no knowledge of lyme. Right now she is on iv antibiotics because it is in the neurological stage. However, lots of things online state that the iv really is not a good way to go. It has many negative side effects, and it only treats lyme, not the co-hosts.
She is scared that she is going to die, and actually has something called a pickline inside of her in order to administer the treatment, which she has read can be very dangerous. She wants it taken out. She has been on the iv antibiotics for about three days now and has reacted very poorly to them. She also thinks she has a yeast infection.
We have a couple of options right now.
-leave the pickline in and continue with iv antibiotics, and treat for bartonella afterwards (which doctors believe she has)
-stop the iv treatment and go to a lyme literate doctor which is insanely expensive and not covered with insurance. Apparently they treat for lyme and the co-hosts simultaneously. They also make sure her liver does not fail from the treatment and such.
-Travel across the country to a region where lyme is abundant and doctors actually know stuff about it. So far the doctors here have been of almost no help because they are afraid of lawsuits and such if they treat her incorrectly because they know almost nothing about the disease. Which is so frustrating.
Do you have any suggestions? Any tips or anything you could do to help would mean everything. My whole family is desperate to get help. She has not shown any signs of improvement and it is awful. Thank you so much.
david66747 jadon26726
Posted