Over the last few weeks I am continuing to experience more and more loss of temperature control in my body. I have a reduced sensation of cold and of hot. Two hours after sitting in an air conditioned lobby I will be sweating profusely. From my head arms chest and back. I can take a short walk from our vehicle to the dr office and I will sweat so bad the sweat will drop from my forehead to my shirt. I soak through multiple shirts. I think this heavy loss of fluids is effecting bowels. I take a laxative and yet I am continually constipated. I am at a loss as to whether this will get worse or not and if anything can be done. I drink a gallon of water in the evening and still have difficulty urinating. No flow and little content although urine is dark. Does anyone have any insite to share.
Have you been tested for autonomic nerve involvement? It may be that the cidp has exacerbated which is understandable from everything you have recently gone through. It should go back into check as your body heals. The urine retention may need attention so talk to your doctor.
I should have said call both doctors. Maybe the neurologists can add extra meds temporarily while you heal. I had to do that before as well. And call your general as the retention may turn into a urinary or kidney infection pretty quickly.
Thank you I will do that.
I have had CIDP since 06. I have lost most of my ability to sense hot or cold. Most of the time the only way I know i'm hot is because I just start sweating and the way I know I'm cold is because I have been shivering for five minutes. Sometimes I have episodes where I just sweat profusely.My neuro says it is a result of progression of the disease. I have to be careful in summer and winter.
> autonomic nerve involvement CIdp
Research, Google this term, as this can be a serious sensory nerve root demylinization.
I think I am the opposite. I go outside because temperatures below 76 I am freezing yet I can stand to be outside if it's 95 and it doesn't bother me at all. It's been this way for a long time so I really can't stand winter. Another thing that has changed in me is that ice was the only thing I could put on me that felt good through the winter which I hated because it was cold. Heat made me hurt worse. Now the heat makes me feel better. But if I can sit in cool water that feels good too as long as it's very hot out. I do sweat a lot though but am always drinking something to keep myself hydrated. But if I just sit and don't do anything I don't really sweat a whole lot. I just feel warm and good. My roommate turns the air condition down at night so I still sleep with a comforter on my bed and sometimes still wake up freezing. Winter i sleep with 2 on my bed.
Hey all, I have been dx with CIDP since 2010 but have actually been plagued since 2006 or earlier. I was originally dx with MS. Gave myself shots of betaseron for four years, new Dr. came to the hospital clinic where I was being treated and the new one, who came from the Mayo Clinic, told me that she did not think I had MS. She actually found several of us. The clinic would not tell me how many. They were liable to us, and then proceeded to thwart their liability. Anywho, she put me through the mill and uncovered, with the help of the appropriate Dr., CIDP. I was by that time having trouble lifting my feet. So, took 11 or 12 treatments of IVIG in 2011 and that put me into remission with residual numbness in my feet. This heat issue is interesting and autonomics are as well.
In January of 2012 I had to have an ICD implanted in my heart due to severe ventricular tachycardia. No heart disease. Just an electrical issue of unknown origin that seems to originate from a place on the top middle of my heart, outside. That is a bad place to try to ablate so they did not try beyond trying to burn through from the inside. They are pushing to consider taking the risk and ablating. This is a 1000 to 1 chance of dying. Not sure how I feel about it. And the cardiologist says it is autonomics he feels certain. i also have horrible hot issues. If I had ovaries I would say hot flashes but I have not had any for 12 years. This is not that. I get so hot, then cold. Much like I am seeing here. Now, I am having a hard time breathing, like my diaphragm will not go down. I do not get enough air. They put an oxygen sensor on me overnight and I am dropping to 80% at night, staying at 88 for 20 mins and 89 for 30. This calls for oxygen. A sleep study shows mild apnea. So, not that. I am not overweight.
I really have no idea where to turn. I feel sometimes like I am just sitting around waiting to die. I cannot breath. Inhalers are not helping. The expansion of my lung base just is not happening. A scan shows my lungs collapsing at the base and I had walking pneumonia, they said, a month ago. ??? Autonomics? That scares the hell out of me.
I have had heart issues too. Extreme chest pain with bad ekgs. Severe breathing issues, body temperatures as low as 95 ...etc. I've said this before and I'll say it again because it is so important, get a nutrition/metabolic panel done. My autonomic function has improved 50%. and is life changing. Integrative medical doctors can tell you which tests should be ordered. They are mds/phds and covered by insurance. I have done much on my own but made an appointment with the Raby Center in Chicago since finding out these doctors specialize in giving the body all the help it needs to heal. I have an appointment and hope they can take me even further. Less is more.
When they were dx the cidp they did extensive panels and testing, can you tell me more specific tests?
Thank you
I was tested for some things too while in the hospital. I had iron and vitamin d deficiencies and low b12 and was told to supplement. It wasn't nearly enough and not effective. I was tested by a hematologist 2 years later and was worse not better. He tested all the vitamins and minerals. I was deficient in b2 in addition to the others and insufficient in many more. Geneva diagnostics was the lab and I was tested for vitamins and minerals, amino acids, essential and metabolic fatty acid markers (rbcs), antioxidants, mitochondrial dysfunction, methylation, and toxic exposure and Krebs cycle. I don't know how many years I had been deficient and insufficient but I can't help think it played a role in getting sick. I know it did to get well. Since getting iron infusions and supplementing with the right type of vitamins and antioxidants the quality of my life is a complete turn around. I had markers for lead, mercury and manganese which my body absorbed because it was so iron deficient. My body was desperate for iron and magnesium and zinc, it sucked up all the bad ones probably from all the fresh (sea) foods I ate. I tested negative for heavy metals in the hospital. While my levels are not high enough to be the cause of my troubles, there are no safe levels of those metals to have in your system. I need to have another panel done and see where the levels are situated but for now everything is dramatically better. I can't understand how something so simple, that had such impact and easily fixable was not taken more seriously.
I have similar issues with my lungs. You have to do breathing exercises that force you to breathe deep to expand your lungs. You can increase lung size and strength. I did. Try Maya Fienne's chakra or mantra yoga. Look on youtube. Start slow and always sit because they make you dizzy but it works better than anything my pulmonary neurologist has recommended. I am able to build strength at my own pace and it doesn't feel like therapy.