At a complete loss [neuropathy, brain fog, and dryness]
Posted , 4 users are following.
- About 4 years ago, I was diagnosed with post strep arthritis, after a bout of swollen joints, after a throat infection.
-Anyway, that wasn't that bad. But then the creep of subtle, but annoying sympotms started. The arthritis never really went away. It would bother me when stressed, when the weather changed, or just seemingly randomly.
-Then the dryness, in my eyes. Especially at night, i would wake up with my eyes welded shut.
-I'm a programmer, and quickly found dry eyes to be a serious problem in an indoors environment, focusing on a screen all day. I was prescribed eyedrops, and that was that.
-Then my mouth joined in, especially at night. I would wake up with my tongue stuck to my gums, with the most horrendeous hallitosis. I complained to my doctor, but they simply said I would have to live with it, and to make sure my bedroom isn't too dry. I plodded on. I chased infections around my gums.
-About one year ago, the dryness improved, my mouth improved to a very functional level, and my eyes to a nuissance, but not painful level. Then the neuropathy started. Intense burning in my feet, first only at night. Then after exercise. Then my hand joined in. During exercise, or at night, my hands and feet would become intensely hot, at times painfully so, such that I had to reduce my exercise levels drammatically. I still craved sleep.
-My mind was foggy and heavy during the day, I only got 2-4 horus sleep a night. My work performance was suffering. I went to the doctor, and was prescribed mdeicine after medicine, each with terrible gastrointestinal side effects, which would have been fine, but they all knocked me out. Put me into a semi comatose state. After a few months of that, I had to lighten my workload or go crazy. My boss was increasingly questioning my performance. Which was fine, I had grown tired of being a 'code monkey' and was training at college to enter university, anyway. I concentrated on college, and lived on my savings.
I was due to see a neurologist, so I put up with no sleep, constant brain fog, and almost everyone telling me i looked like sh*t and should get some sleep. That was december. I jsut got the letter, saying my appointment is at the end of may. I had to leave college in january, and have been claiming job seekers, since.
I tried working, again, for two weeks. But my brain is screwed. I've went from being extremely sharp, on the ball, and engaged, to feeling like my head is filled with treacle.
But it isn't just the sleep deprivation(unless it's done permanent damage) Because, lo and behold, in the last month, my symptoms have switched, again. The neuropathy has died down, to the extent it is just a nuisannce, allowing my to sleep 6-8 hours a night. But, my dryness is back in full force. My eyeballs hurt throughout the day, due to the hammering they get at night. My mouth is little better.
My GP has given my every blood test in the book. Thyroid, rheumatoid, all vitamins, BP, BS, etc. Everything has come back excellent. Apparently I'm the model of health, in terms of blood work, BP, and BS. I'm 23, moderately fit, and thin.
But the brain fog is killing me. I'm seriously fatigues, as well. I don't know, anymore, if it is damage from a year of little to no sleep, or if it is pathological in its own right. I'm increasingly thinking the later, since it fluctuates, like the other symptoms, gets much worse as the day goes on, much as my dryness and neuropathy. It also feels very essential, very solid. It's almost like the mental equivalent of dry eyes. Everything is occluded, with the most prominent metnal deficit being an inability to parse information(the single most important skill in programming) It manifests when looking for something on a supermarket shelf, or trying to run through some code and identify pertinent bits. Other mental deficits might be my imagination, but the need to parse things in a very slow, methodical manner is a very real, solid thing. But, mainly, the problem is an almost literal fogging of my consciousness. Like being in a state between lucid wakefulness, and automatic dream consciousness.
It's ruining my life. I'm about to be kicked off job seekers. I can't program at the speed i need to to hold down a job. When the fog is at its most intense, i dont feel safe crossing the street. I started a job entering data into computers, but again the parsing problem made me, very, very slow at it. I went to my GP, but due to the perfect blood work, and the fact that I can speak and move around, nominally, they looked at me like I was crazy, and simply said to wait for the neurologist. I made the mistake of asking whether I could have Sjogrens. They laughed, and said it would be about as likely as winning the lottery, in a 23 year old male.
I only know about it, because when I put my primary three symptoms, of neuropathy, dryness, and arthritis into the symptom checker, it comes up as the first likelihood, with little else seemingly fitting my symptoms.
I'm at a complete loss, now. No one takes me seriously. I'm about to lose my jobseekers, unless I take a job paying less than half of what I was making, doing something extremely menial. I know I shouldn't baulk at such a thing, but I worked hard to get to where I was, and planned on working harder. I know I was lucky to be able to, but it's very psychologically difficult to be bored all day, and earn a fraction of what your previously did, for the privellage. But, I'll have to do it.
I know, if I can't find out whats going wrong, and I'm like this, or worse, in a couple of years, any hope will be gone, though. I'll be completely suicidal, and have to kill myself out of necessity.
I'm not sure what, if anything the neurolgist will find. I hope they can at least confirm I'm not imagining the neuropathy, so I'm taken slightly more seriously. But really, I'm interested in knowing what in gods name is happening to me.
Am I going to get worse, what exactly is wrong with me, and how can I try to get back to a functional state, where I can at least work, and hopefully go to university as well.
I appreciate this is a lot of text, and many, if not all will make it this far. But, if anyone has, I'd appreciate any input on what might be wrong, or if youve experienced anything similar.
0 likes, 3 replies
angie29533 sillyrabbit
Posted
Still no answer. Doctor says ( it appears you have something, symptoms of something else, side effects of another) they wont discuss until the ruling out process is done. Scary !!! I can only tell you from experience, i had to quit working. I couldn't walk, sit, stand, or hold or grab anything with my hands. I get muscle twitching all over. Got foot drop on left leg. My left calf has like permanant weakness. I can now see the muscle twitches move. Hands get stiff and involuntary movements. Brain fog was really bad in the begining for me on the medicine gabapentin.
When my symptoms first started, i couldnt remember how to do simple things. Now i use a walker to go out sometimes if we go alot of places. I just wish we all could get an answer so it doesnt look like we are crazy cause nothin pops up on our mri's and blood work. Nothing is worth taking your life though. You just have to find alot of patience and pray. It takes time dealing with this stuff i have been told. You should try disability or ssi once you see neurologist. He will probably do emg, eeg, nerve conduction, a few mri's. Just beware. Good luck. Let me know.
AFW sillyrabbit
Posted
what are your exercise habits? food habits?
Have you done a MRI yet?
exercise is the single most thing you can do for your brain. eating brain diet (mediterranean) is another, avoiding certain things and eating more of other things. Drink a lot of water, meditate daily, rest.
If you can cut the line somehow to see a neurologist, do it. Before taking what they give you, research...
sara52320 sillyrabbit
Posted
Hello sillyrabbit
I hope by now you got the answers you needed, however, to me this sounds like Sjogrens Syndrome. You will need a positive Schirmer's test on the eyes, a positive lip biopsy, and preferable a positive blood test too for antibodies, which you say you have taken but to be sure make that referral to a rheumatologist. They can tell the difference and also test for similar illnesses to Sjogrens.