Feeling discouraged...undiagnosed as of yet

Hello, everyone. I have had one year of remitting drop foot, uncoordination, weakness in both arms, severe muscle atrophy in my left hand that is now starting on my right, two EMGs and nerve conduction tests, one only for my drop foot and one more recently in my left arm and both legs. The second was “abnormal” and I have been told that I have some sort of autoimmune disorder and my symptoms add up to mononeuritis multiplex. I have my lumbar puncture on Friday morning, May 18th but I have recently had 3 UTIs in three months, all treated with increasingly stronger antibiotics that don’t seem to make a difference, as of three days ago, I discovered that the inside of my mouth is covered with very painful canker sores, and my genitals also have sores. It became very difficult to speak or eat or drink anything yesterday and I will go to my PCP on Monday to see what can be done about it since I am already taking antibiotics for my 3rd UTI. My throat is also getting increasingly sore and the other day I felt so fatigued that I had to leave work after only an hour. This is my main point…work. I am currently working about 25 hours a week, but have had to take so much time off for doctors appointments, fatigue, and today I will call in because of the sores in my mouth that make it hard to speak and be understood that I fear the end is near for my job. I also took off 5 days three weeks ago for my IVIG treatment. I think I’m done. I feel so much that there is no way I can get healthier, if that’s even possible, while working these hours. I will also be starting an online class at the end of the month, and I need that to keep me sane. My doctor told me to take some time off the other day and considering that I have bad headaches every single day now and have to just lay in bed all day in order to rest for my shift, I’m asking you all for advice about disability. Is it possible? My work history is spotty these past few years so does that matter? Really ready to just quit today because being on my feet and hustling for 6, 7, or 8 hours a day may be contributing to my health issues. Thanks in advance for anyone who has gotten through this to the end and who may have an answer for me.

I’m sorry for all you have detailed. It sounds that medically you could qualify for the disability benefit of social security. At least until you have more time to recover. I’d suggest using an attorney that specializes in it to get the paperwork done. Don’t pay all in advance.
Do you have any private health or disability insurance through your job or privately.
Seek out some legal clarity on what you job can do to a sick person? Probably not much help there but may gain reprieve or just what rights you have explained.
Can you possibly afford not to work at this point in your life? Important to try and stay employed if at all possible if not wealthy enough to quit and support yourself.
You can get better from here. Find the right neurologist to help you, don’t settle because there are good doctors for cidp and GBs. It doesn’t sound like what you have but possible.
God bless! Don’t give up! One day at a time. You won’t solve your lifetime anytime soon. But you can survive today.

There is something called flush from prolonged anti biotic use. You combat it with taking acedophylsis and yogurt in large quantities while on anti biopics. Also there is liquid deadened for mouth ulcers. It’s name escapes me right now. But when appliednit will give some numbing relief.

Thanks so much,William! I will try that. I spoke to my doctor yesterday and told her that I had contacted disability and she was thrilled. I am hoping I will not need to get a lawyer. Is this what most people do? Thanks so much, again.

A lawyer isn’t always necessary to get disability - if money is a concern, definitely try to get it without one first. However, to obtain Social Security disability you would have to have been unable to work for 5 months. So you may be looking at a long time period with no income before you could even apply. Your mouth does sound like thrush. There is a prescription mouthwash your doctor can give you to help with that problem. Agreed with Williamtscott, it doesn’t sound like CIDP or GBS, but I am definitely not a doctor.

Thank you so much! I have resigned from my position as of Monday, May 14th, and I already feel so much less fatigued. It’s amazing the difference. I am planning on trying to get disability via an advocacy group. Thanks again for the response.