Hi Sue! Sounds to me like the hearing getting better and then getting worse is an Inflammatory problem. And when on the higher doses of Prednisone and other Inflammatories it kept the Inflammation down. But now that your back on a lower dose the Inflammation is coming back causing your hearing to go bad again.

My lupus one time many years back caused a problem with a nerve around my left ear! I stayed dizzy and kept getting worse instead of better. They had to increase my dosage back then and the hearing and inflammation went down. So that might be what is happening with you.

Do you ever get wax build up in the ears. Sometimes that too can cause a hearing blockage. My husband has this problem terribly bad.
But yours sounds like an inflammation problem.
Hugs
Linda H

Hi Sue! I know what you mean there. I am on disability and it stinks! The income you make really does not cover what a sick person should get. The bare essentials. If you can hold out as long as you can then I would go for it letting them know you have certain disabilities that keep you from doing certain things. For me! I had no choice but if I would have had the choice back then I would have kept on working. You really don’t make much on disability. Not much at all! My husband if it were not for his income I don’t know how we would have made it all these years for I sure can’t live on my income alone. But I feel for you. Hard working and being sick! I have trouble functioning in my own home half the time much less working a full time job. I even tried a part time job and was not successful!
I was shocked as heck today for I actually got lucky and cleaned my whole house up. Probably because I have 40mgs of prednisone in me! LOL! Once the dose gets lowered I end up not being functional again!

Well Muscle Spasms is one and Nerve Damage is another symptom. Feeling aggitated or nervousness, headaches and dizziness, fatigue. Those that no longer make Intrinsic Factor can get really really sick. They can have a stroke or go into a Coma if the B-12 gets severe. Mild cases to can cause nerve damage and if left untreated the nerve damage can’t be repaired. And if it can be repaired then it takes a very long time. Muscle cramps too are a symptom. He may need to get rechecked.
Do you remember the Terry Schiavo Story they had a few years back where the husband wanted to pull her feeding tube and the family members were trying to fight him in court. There was also a movie about her! She had a B-12 problem and went into a stroke and coma making her vagetative state. It really messed that girl up. She ended up having to have round the clock nursing home care and could not speak. They said she had the massive stroke when she was in her early 30’s and apparently had a B-12 problem that never got diagnosed until it was to late. If he is having these kinds of problems he needs to be rechecked.
I thought my lupus was acting up and was passing out everywhere! So my doctor sent me to see a Neuro back then. They checked me from head to toe and did every lab possible. Everything came back normal except for the B-12. Once they started me on it, I started getting better. Then a few months later after that car accident I went into a lupus flare again but that time it was lupus. Was complaining my lupus was giving me a fit and it was B-12 instead. B-12 and Vitamin D both can really play a number on your body thinking you are dying if it is severe.
Good idea about getting rechecked. But those shots every week for me are a pain! I hate needles! LOL! Hugs
Linda H

Hi Sue! I too was eating alot of foods with B-12. But kept getting very nervous and jittery and noticed that I was staying numb worse than usual. It too was a different kind of numbness. Sometimes a persons body for many reasons can cause malabsorption problems. Meaning the stomach lining is no longer absorbing the B-12 no matter how much you eat things with B-12 in them. I thought I was getting enough Vitamin D too and Calcium but have problems with that also. CIDP could be the cause since we are dealing with our nervous systems. The nerves in the lining of the stomach might not be working as well as it should be. Auto immune disorders too can cause it! Many things can cause low B-12. There are two kinds of B-12 issues though. One is being low anemic and the other one is A Pernious Anemia. One only requires taking the pills until your B-12 levels get back to normal. Where the other one can be life threatening requiring shots just like someone with diabetes having to take needles for insulin meaning they no longer can make Intrinsic Factor! I have to take needles of B-12. Some folks only need a once a month dosage while others needs shots weekly. I have to be the weekly one! And I hate needles! LOL! I have been getting shots for over 3 years now and had Andy giving them to me because I was big chicken!
Then one night I felt myself getting a B-12 attack and knew I waited too long to have that shot. It was when my mother was sick. I ran into the bathroom and stabbed my arm and gave myself that shot! Now I am giving myself the needles instead of Andy. But still hate the needle jabs! If you only have to take the pills and no needles then you are still making Intrinsic Factor and absorbing some B-12 but not getting enough. When your Intrinsic Factor becomes positive then you have no choice but to take shots in the muscles. Alot of people can get low B-12. Sometimes a persom’s potassium can get low. It’s just our immune systems might be lower than we thought and we need that little extra help to get us feeling better again! But CIDP may be a factor. Good luck Sue! Good to hear from you again! Hugs
Linda H

Hi Sue! It’s possible that it could have some linkage. Many people with auto immune disorders get vitamin deficiencies. I have Lupus and then it went into CIDP. But then I got diagnosed with Vitamin D and B problems. Sometimes medications can eat the stomach lining causing this, Celiac Disease or Chrons Disease and many other diseases can cause issues. And then some people have CIDP which is misdiagnosed and it was a B-12 issue all along.
And then our diets too can sometimes cause problems. Elderly people can get deficiencies easy because their eating habits can change.
It could be linked but then again it might not! But those with auto immune disorders are prone to getting vitamin deficiencies because of their illness! Hope this helps! Hugs!
Linda H

Hi Sue! Could be arthritis going on! If it’s spinal stenosis that might be your cause of CIDP but not sure if your were diagnosed with something else causing the CIDP. CT Scan won’t really show Spinal Stenosis. Some MRI’s will show it and sometimes it won’t needing a CT Mylegram. That can cause back pain too! Herniated disk can cause back pain. They have so many things today that can treat the spine. I would not really worry to much right now until those test come back. Sometimes an MRI might show something and then when dye is injected and the MRI is done they see it was something normal!
Just keep us posted though! I had Spinal Stenosis and had surgery on 3 disk! 24 hours I was back at home. No longer have back pain and no longer have sciatic nerve pain. They had me up and walking 4 hours after the surgery. I did pretty good! You might be okay but they just want to make sure it’s nothing bad going on! Hugs

Hi Sue! Glad to hear it was not Myasthena Gravis. Whew! I react differently to medications too! If the pill is not right, I can’t take it! Hope you had a good weekend and was a little less stressful for you! Stress and depression can really take a toll on you having CIDP! Can aggitate the stuff more! So I hope that this week is much nicer for you and you feel better soon! Keep us posted though on what they find! Hugs

Hi Sue! I think everybody answered your questions so I just want to wish you well and hope you recieve a diagnoses soon! Isn’t a pain being sick with something and having no answers. I hate it! Maybe one day soon both of us will finally get a diagnoses and get better soon! Good luck!

Thanks Sue for your message. So far retirement has been a wonderful experience. I’ve kept busy 100% of the time.
I am at the cottage these days with only dial-up access to internet so my visits to the forum have been sporadic.
But I’ll keep monitoring things to see how everyone is progressing.
Take care and keep in touch
Andrew