First I am so thankful this website exists!!! Thanks to everyone!!!
I have a few questions, and feedback is appreciated!!!
I am a 44 year old mom who has been working in Clinical Neurophysiology in the operating rooms of PA and NJ over the past 15 years. I have a license as a Physical Therapist as well. I started having trouble with numbness, stocking glove, in hands and feet over the past 3 years. I had two carpal tunnel surgeries, which made my symptoms worse!! I continued to explain to the workmens comp doctor it didnt make sense. I wasnt until persistence of going to a Neurologist for repeat EMGs over a 2 year span that I was finanally diagnosed with CIDP. I did have a spinal tap to also confirm and followed up at Unniversity of Penn to confirm. My symptoms progressed with dexterity isssues and proprioception (lack of knowledged of legs in space) and intermiitent falls in the dark. So that is my background...
I started IVIG treatments in September. They have helped significantly!!!! But I do have side effects. It seems that I either have bouts of vertigo, this happens when my blood pressure is around 80/50... When I run 100/70 I seem to be ok. I try to hydrate... Any other suggestions????
Also I experience throat pain and ear pain for at least 1 week post treatment.. Any other person experience this??? Any explanation or suggestions????
I am extremely worried about finances. esp for my childrens future. Our family relied heavily on my salary. I was terminated from my job of 15 years because I went past the FMLA. The medical field does not want employees with medical issues...ironically!!! Or at least my prior employer!! My career both in Neurophysiology and Physical Therapy are Both very physically demanding. I am currently on disability from prior employer... My doctor recommended to obtain a disability attorney.... I can not find an attorney who can help me with both Maintaining my 60% private disability as well as social security disability... Has anyone been successful applying for disability?? Any advice would help!!! I have to pay 30% of cost of treaments with my husbands Cigna insurance. I have always been a hardworker but I can not see work being realistic at this time. It seems the more I do the worse my symptoms become. I have a heat intolerance...with exercise and the sun!! Which were my two favorite things!!! Anyway I do not want to seem negative... I am just trying to figure out what is realistic for my future. I do not want to loose the ability to take care of my children.
Any input on anything would be so helpful and appreciated!! This can feel very overwhelming!!!
Have a wonderful New Years!!!! Take Care!!! Joanne
I might be able to shed some light on one of your areas of concern. Regarding your work disabilty and social security disability also. I am going to go out on a limb here and say it is going to depend on the rules and policies of the company that offers your work disability. Read them carefully and get help form HR if you need to.
I had disabilty insurance through work also that covered 60% of my paycheck. The insurance company I had required me to apply for social security disabilty also. This I did (without the aid of an atty) and was approved right away. I then notified the insurance company who reduced my payment by the amount I received from social security when those payments started. Thus, I get 2 checks monthly, the one from social security and the other from the insurance company that covers the amount that would have been 60% of my last paycheck. This was over 5 years ago. I just have to have my dr. complete a medical every year for that company to verify my disabilty and continue with my benefits.
Thank you so much!!! This has been so stressful on a financial level... I am happy to hear you didnt need an attorney!!! Its bad enough dealing with the physical challenges... and trying not to have it effect your children... but when worrying about future financial decisions on top of it... It is very difficult!!! Im glad to hear the disability insurance covered...
I had disability from my employer, also. I was advised by the insurer to apply for Social Security after I had received benefits for 2 years. I was sent the paperwork from an attorney I had never heard of (who was in another state, btw). I already had my own lawyer, who helped me apply for Social Security. I was told that you need to be at least 50 years of age to get approved on the first try.
I got approved by Social Security. They sent a check for my payments from the time I first became eligible. Now I receive a monthly check. I was told by my insurance company that I needed to repay the money I got from them. I have been on a repayment plan for 2 years (three to go, yahoo!). I am thankful that I had the insurance to help after I became disabled.
Concerning your response to IVIG: have you tried using Benedyl and Tylenol to relieve your symptoms? When I had my infusions at home, the nurse gave me Benedryl and Tylenol to lessen my reaction the the IVIG.
Thank you!!! Really appreciate hearing what others had experienced with disability. Also regarding the Tylenol. I dont take it due to a liver mass. It probably would help with they pain. Thank you again!!
Blue Topaz said:
I had disability from my employer, also. I was advised by the insurer to apply for Social Security after I had received benefits for 2 years. I was sent the paperwork from an attorney I had never heard of (who was in another state, btw). I already had my own lawyer, who helped me apply for Social Security. I was told that you need to be at least 50 years of age to get approved on the first try.
I got approved by Social Security. They sent a check for my payments from the time I first became eligible. Now I receive a monthly check. I was told by my insurance company that I needed to repay the money I got from them. I have been on a repayment plan for 2 years (three to go, yahoo!). I am thankful that I had the insurance to help after I became disabled.
Concerning your response to IVIG: have you tried using Benedyl and Tylenol to relieve your symptoms? When I had my infusions at home, the nurse gave me Benedryl and Tylenol to lessen my reaction the the IVIG.
Very hypocritical medical field, isn't it? We spend our lives working long hours, on holidays, going without lunch & bathroom breaks getting other people well but when we fall on hard times medically, the employer's compassion goes right out the window! I am still working as a nurse, but I don't know for how much longer. I have LTD & STD insurance but am still fully employed and also worry about navigating the SSDI system. I have often thought of quitting work and drawing against the LTD but the problem is, with the amount of money it would cost me to keep my health insurance on COBRA, there would be nothing left to live off on. I have 2 children of the home; 1 senior and 1 sophomore and I am trying desperately to hang on until the youngest graduates HS. I worry that once I become "officially" disable, that we'll lose our house. I was on IVIG, but developed aseptic meningitis and my treatments have ceased until I don't know when and I can't take steroids which leaves immunomodulators that I am scared to death of OR PE, which I am not sure is even offered in the local hospitals. I have been referred to see the super neurologist, Dr. Pestronk, in St. Louis but my appointment hasn't been made yet. I'm also going to see a rheumatologist as my SED rate is pretty high and I feel as though I have been ran over by a Mack truck. I, too, suffer from Uthoff's (heat intolerance) and do anything and everything to avoid the outdoors so I have to take 4000 iu of Vit D3 every day to make up for the lack of sunlight. I can't think of what would be causing your throat and ear pain except for inflammation caused by the IVIG. Like you, I don't know up from down when in the dark or when I have my eyes closed...I just fall right on over and I have struggled with vertigo for years to the point of vomiting while just turning my head. Meclizine (OTC antihistamine) helps as does a low salt diet. I was only diagnosed in May, but think that I have had this for a much longer period of time. The only advice I have is to live each day in the moment...do everything you can to make each 'today' good and the past will take care of itself. Worrying about the future takes away from today, but it's extremely hard not to do and one DOES have to plan ahead when they suffer from chronic disease. I hope someone here can help you. There is a lot of first hand knowledge here. Good luck!
Thank you Sunshine!! Really appreciate your input and advice!!! I am so sorry to hear you developed meningitis from IVIG! pretty scary.. Good luck with your future appointments and treatment!! I can understand wanting to get your children through high school!! I did hear if one qualifies for disability will be eligible for Medicare... but I am not aware of the premiums. Take care of yourself and if you can keep me posted on how you are!!! Again Thank you