Hearing problems, Tennitus & Otosclerosis Anyone?

Hello CIDP friends. I was diagnosed in January and have been receiving 60 gramsof IVIg every three weeks since then. Before treatment, I was barely walking with a cane since my feet felt like they were encased in cementand my calbes were already numb. I had terrible weakness and numbness in both hands and my right forearm. I was unable to pick up a half gallon of milk or juice with one hand. After my second IVIg treatment, the feeling started to return in all my extremities. I was extremely fatiguedbut so happy and relieved. Icould walk without a cane and was somewhat returned to my old self.

Unfortunately, I began having horrible effects from the treatment. For five to seven days after, I was not only extremely fatigued, but would have nausea, vomitting, diarrhea, headache, fever. This was worse than the worse flu I have ever had. At first I thought I might be sick but after it happened three times, my doctor agreed it was the treatment.

About three months ago, I began experiencing a beating sound in my ears. Then my ears felt like they were full of fluid, I would hear whooshing noises, crackling and have difficulty hearing. After a few rounds with my GP, ear drops and allergy meds,I went to an ENT. I had a hearing test and he says I have a disease called Otosclerosis. It can be hereditary, but no one in my family has ever had it. I find it very hard to believe that my ear problems are caused by a disease that is not autoimmune since I have CIDP and also Crohns Disease. The timing of having this ear problem right around the time the IVIg started to be a problem would also be a strange coincidence.

Since my neuro felt the IVIg dose I was getting may have been too much and was making me so sick, I only received 30 grams this month. I am two weeks in and haven’t felt this good in a very long time. I am hoping this dose will be the right balance and that my symptoms won’t return. I have felt little things here and there, shocky and jerky and pains in my thighs, but acceptable. My energy level has been great but I am waiting for when I crash and can’t get out of bed. I feel pretty good so far, except for my DAMN EARS! They are still so painful and I will have to get fitted for hearing aids. I may also need surgery. Has anyone else experienced any of these things? If so, I would so appreciate if you shared your story.

I have had tinnitus and minor hearing loss for many years having been exposed to loud noise when younger (much younger...) . So far I have not noticed any change following onset of CIDP or after IVIg treatment. My onset followed minor knee surgery and while tests show some involvement of my arms I do not perceive any problem there - just the legs - so perhaps I am lucky and it will stay as a leg problem - not further north....

so sorry to here about all your troubles and now your ears too~ I'm so sorry it is hard to go thru all of this and keep going but you are sure a trooper to me.

god bless ruthie

I get those sounds that seem to come on without warnings just do their thing....they are deep in sound inside my ear and feel like pressure too?

I have them for years...I do have a hearing lost.... I don't wear a hearing aide, insurance reasons.

Hi DoggyMaMa

I have CIDP so they say when I was diagnosed at the end of last summer. I have had the symptoms of this problem for many years. It took a foot Dr. to catch on and send me to a neurologist.

So, any ways like I said I have been struggling through life with this for years. And I have noticed that my hearing is going. And yes I have clicking sounds that last for some time. And pressure. The intense riging comes and goes. But they is always some their. And so I do believe that it could very well be related to my CIDP. Most every other problem I have is.

I don't know why or how it has not put me down yet for good. It does put me down for a while but with rest I bounce back some and do it all over again. I have been waiting to see another Neurologist this July2 with more degrees up at Dartmouth in Hanover NH. since last April. He will either help me or disable me. I am missing so much work now it is close to being over with. Just can't take the stress of working on my feet all day any more.

So yes. I have some weird ear problems that I believe to be related to CIDP.

Sorry I don't have any good info for you but just letting you know that they is at least one other having some of the same issues.

I so hope that they can get you straighten out and that you can get so much more out of life.

My doggy Buster says Hi to your Doggies

Best of luck

Awasos

My infusion nurse told me the dosage is half your body weight. I get the infusions @ home. It started at 2 days every three weeks. Symptoms were returning prior to the next appt. now I am every other week. Nausea and headaches are bad the day of the infusion and improve after a day or so. Fatigue is ever present. I get the shocky,jerky feelings in one leg at the end of the infusion. I was also using a cane prior to IVIg, as long as I don't wear myself out, I no longer need a cane. I have not experienced the ear problems, I hope you find some answers. Peace Nancy

This sounds all too familair to me. I have major ear issues too. Apart from the CIDP I have intracranial hypertension, hence the vomiting and fluid like feeling in ears is actually due to too much spinal fluid. I have found medical journals where the 2 issues are actually related. I had ear surgery and it was the absolute worse thing i have ever done. I wish i never did it ( not for otosclerosis but to patch a csf leak)