My Neuro wants me to have this test. My insurance will not cover the cost which is 2,700. This test is not done at specific labs or a person will come to my house for the draw. I am flat in bed with pain. I can not afford the test and do not understand how this will assist with IVIG. Has anyone needed this test
I am in a brain fog. I do not know what to do next. I think calling the neuro would be a good start. I can not imagine another hour of this torture.
I also have gained 20 pounds in a month. This is significant for my small frame. My abdomen is desended. I am uncomfortable. The weight gain has me over the dodge.
I feel like something is drastically wrong. I told my husband if I am out of it to tell the Dr. I want morphine. This is coming from an anorexic narcotic phobic. I have not do e much today. My fingers throb too. I am a mess.
I am so sorry to hear the physical pain and brain fog you're experiencing. Because you said you don't know what to do next, I'd like to strongly encourage you to make calling both your neurologist and your primary doctor your first priority. If you can't do so, please ask your husband or someone else to call for you. Your instincts are right - something sounds wrong and needs medical attention. I really hope that you will be able to find some relief.
I don't have any information about genetic testing. For the moment, I'd focus on describing your current symptoms to your doctors and working on them immediately.
I totally concur. You need to go to the primary care doctor. It seems like your distended abdomen is not something a neurologist would want to deal with. Unfortunately this disease is associated with other diseases. I am hoping that he will relieve your mind. It is also easier to get an appt. with the PCP. If you can not get this appt soon, go to an urgent care center. Do have someone evaluate your abdominal complaints. My prayers are with you.
I can only imagine what you are going through and I hope the best for you. I don't know what you're doing for pain, but I can tell you that I had to get past my fear of pills to manage it. Your conscientiousness will be your guide, but understand that when our bodies are under attack, we must do what is necessary. Morphine is the far end of what's available. This disease can attack multiple symptoms and we often overcompensate for our discomfort and fears, but that can hurt us. Not sure what treatment regimen you are on, but I dropped 50 pounds when CIDP struck. The SoluMedrol has caused weight gain in my trunk. I don't like it, but the corticosteroids help me maintain a level of normalcy and keep me from worsening. You have the right idea...GET THE DOCTOR ON THE PHONE. I will send positive thoughts your way.
What is the doctor doing genetic testing for? I mean, what does he/she think you have in addition to (or instead of) CIDP? What is his/her rationale for the testing? Is it because the IVIG is not helping? If they can give you a solid reason for what/why the genetic testing and what they can do about what they find, then good. If not, try to stop obsessing about not being able to get the test. Remember, stress makes everything worse.
Although morphine will probably take away your pain, it will likely produce a lot of other issues in your abdomen, such as slowing down your gastric motility causing more distention and possibly bowel obstruction issues that you do not need in addition to all of your other symptoms. As everyone else is suggesting, please consult your PMD about your weight gain and abdominal distention. CIDP often is not the only medical malady affecting us, and IVIG affects the kidneys which may be causing you the distention, weight gain, and lack of urination. Simple blood tests may be the key to helping you.
Hi Muppet, I am so so sorry to hear about your ordeal. I agree to call your docs.. First,your primary and explain what your neuro wants to do. Genetic testing is fairly new and I feel your neuro wants to find the "cause" at your expense. I'd agree to the testing if he's willing to pay for it... or if you could get help paying for it. I too hav e gained an enormous amount of weight, in a very short period of time. I went from running 12 hrs a day to absolutely nothing.. I am now trying on good day to do some sort of exersize. I get through about maybe a total of 15 min. in a day. I eat very little. I have brain fog at times, my fingers won't do what I want them to, etc. etc.. etc. But continue on the IVIg which helps. so as a past medical person.. lol..(RN) I would call your primary, get an appt. ASAP, tell them it is unbearable.. if he cannot get you in within a day, go to your ER...they have to treat you there and your first complaint is Severe Pain. Then the fact you are unable to ambulate, sit , stand, etc. They will most likely admit you, and you can go from there. Question every thing they are doing and why, and make sure you getasatisfactory answer. Do not agree to anything you are not comfortable with. Good luck dear. Iam praying for you... hhhuuuuugggsssss
Cookie said:
Dear Muppet,
What is the doctor doing genetic testing for? I mean, what does he/she think you have in addition to (or instead of) CIDP? What is his/her rationale for the testing? Is it because the IVIG is not helping? If they can give you a solid reason for what/why the genetic testing and what they can do about what they find, then good. If not, try to stop obsessing about not being able to get the test. Remember, stress makes everything worse.
Although morphine will probably take away your pain, it will likely produce a lot of other issues in your abdomen, such as slowing down your gastric motility causing more distention and possibly bowel obstruction issues that you do not need in addition to all of your other symptoms. As everyone else is suggesting, please consult your PMD about your weight gain and abdominal distention. CIDP often is not the only medical malady affecting us, and IVIG affects the kidneys which may be causing you the distention, weight gain, and lack of urination. Simple blood tests may be the key to helping you.
Hey there! Please don't stress over the test. It sounds like research which maybe why your insurance will not cover it. CIDP is very complex and new. Try to research on your own to see if you would benefit from the test. I'm sure there are pharmaceutical companies who are doing clinical trials and would be happy to pay you if you need the test. Also, we know pain is real and sometimes unbearable. MSO4 is the far end of the spectrum. Talk to your neurologist until you get the results you need. He works for you and not the other way around. Take care!!!!!
It sounds to me like you may be in renal failure - I would call that a medical emergency. Go to the ER. Renal failure is one of the potential bad effects of IVIG. Get that addressed and worry about the rest later.