CIDP and Neuromusclar desiese

I am going through something simular! No diagnoses or treatment which stinks! My doctor has referred me to Duke and I am sitting here on a waiting list!
They think I too have something Neuromuscular! But the symptoms that you are describing almost sounds like Systemic Lupus with a blood clotting factor.
I know ALS has different forms. Some can be treated while others are fatal! But there are different form of ALS. Something to do with the genetic code.
The disease can be very disabling and in some cases can be fatal.
I hope he starts to get some treatment soon. I would push those doctors and see about getting him on some meds to help relieve his misery~
Just by experience, not getting treatment, I have seen misery and it’s not fun dealing with. At least something to help him would be better than nothing at all.
I wish you my best and hope that your husband gets a diagnoses and starts to recover soon. It’s hard watching your loved one being sick! Very very hard and I admire you for being so strong for him! Good luck and God Bless!

Shrimpbox, I would suggest you do some research on ALS. It ultimately is a fatal disease. It affects many people differently. There are people who succumb quickly and others who live many years. My friend from high school lost her husband to ALS and our neighbor’s wife also passed away with ALS.

I tell you this not to alarm you, but rather to give you a heads up to check this out! Push for answers, research on the internet as there are always new and innovative ways to treat some of these diseases. Go to the neuro armed with info so that you can be on top of what is going on. If you are unable to research, I would be happy to do that for you as I am sure others here would be as well.

We are here to support you. Let us know what we can do.

Keeping you and your family in my prayers.

Shrimpbox, I agree with Jan, if it is als it is fatal! I know a young man who was dx with als recently, he has coded several times already, he can no longer do anything for himself. It can progress at different rates, but ultimately it is fatal. If I were you I would do research, and make alot of phone calls to all the drs he has been seen by, and get all of his medical records sent to you. There are alot of neuromuscular diseases that mimick each other, but there are tests that need to be done to make a dx. If I can help in anyway just pm me. Please be the toughest advocate for your husband that you can be. Don’t forget to take care of yourself also!

By the way, the young man I know, went to a different country for stemcell treatment and is doing ok, he is holding his own still, without the treatment he might not be here today.
Take care. You both are in My Prayers.

[QUOTE=shrimpbox73]My Husband was diagnosed by a neurologist over a year ago with CIDP.He than had a seizure and some cognative problems.We paid out of pocket for JohnsHopkins and that neurologist was leaning more towards a neuromusclar disease.She did not say which one.Then he developed bloodclots in both legs.We were in the hospital for a week,our insurance sent us to UPenn.another Neuro Dr. thinks he has neuromuscular disease and a diabetic neuropthy.He was walking with a limp last April and now it is Sept and he is in a wheelchair!! I think he is dieing and no one wants to tell me.The Dr. at Hopkins seemed to be leaning towards ALS.He still has never had any treatment due to no real diagnoses.Is this disease fatal?? I had to quit my Job because he falls and is now having bowel problems.his hands are now starting not to work well either.I am losing my mind with worry.He is 53.Anyone else feeling this kind of frustration?? Thank you in advance.:confused:[/QUOTE]
Hi. I just wanted to throw out an idea. I was watching a program about medical mysteries and Porphyria came up, and I must say they are some similarities to what you have decribed with your husband. It wouldn’t hurt to run it by your hubby’s doctor. Good luck.
Laurel

[QUOTE=shrimpbox73]My Husband was diagnosed by a neurologist over a year ago with CIDP.He than had a seizure and some cognative problems.We paid out of pocket for JohnsHopkins and that neurologist was leaning more towards a neuromusclar disease.She did not say which one.Then he developed bloodclots in both legs.We were in the hospital for a week,our insurance sent us to UPenn.another Neuro Dr. thinks he has neuromuscular disease and a diabetic neuropthy.He was walking with a limp last April and now it is Sept and he is in a wheelchair!! I think he is dieing and no one wants to tell me.The Dr. at Hopkins seemed to be leaning towards ALS.He still has never had any treatment due to no real diagnoses.Is this disease fatal?? I had to quit my Job because he falls and is now having bowel problems.his hands are now starting not to work well either.I am losing my mind with worry.He is 53.Anyone else feeling this kind of frustration?? Thank you in advance.:confused:[/QUOTE]

I got my medical mysteries mixed up. The one that sounded similar to your husband’s symptoms was Polyarteritis nodosa. This is an autoimmune disease. That is the one to mention to your husband’s doctor. Sorry if I confused you.
Laurel

Welcome to the site Shrimpbox,
Glad you found this site. My two cents is to try and be mindful that too much information and guessing can be more detrimental to your cause. I would say that the most important thing is finding a reliable and knowledgable Dr. that your husband and you feel confident about before pinning down a diagnosis. Sometimes we try to figure the problem out before we get to the specialist and when the Dr. does’nt give the answers we have been researching we pass them off as unreliable and unknowing. That’s not to say that you shouldn’t do your homework, it’s just a word of caution about internet diagnosises. Try to let your wisdom guide you to a good expert. I hope I don’t sound preachy, I just know how much tail chasing I have done due to internet searching. Please be well and let us know the outcome.
All my best,
Linda

I guess my response to your comments Linda is that when you think your husband is dying and you aren’t getting answers from the medical system you have to do some of your own research. Heavens knows we spun our wheels for nearly three years watching my husband deteriorate under the care of three doctors of good reputation including a first rate neurologist. We had to do our own research, and then go in with our results to a new neurologist and present our research to get any action.

I do understand where you are coming from, but watching some of the medical mystery case stories many many people have had rare diseases that no doctor has been able to diagnose and have been near death’s door. The case with polyarteritis nodusa was resolved after the patient went to a third hospital and the man was given massive doses of corticosteroids. But while the family placed all their faith in the medical system, he was blind in one eye and losing site in the other and nearly died. My position is don’t self-diagnose, but research research and then take your research to the doctors.

When my husband was so ill and sat in a vegatative state, with an atrophied right hand, foot drop, and in despair we had listened to the medical powers that be. Never again. From reading what Shrimpbox had to say, she is losing hope and is seeking ideas. Prior to our own research journey, I believe I felt like her ie. sick inside, immobilized with fear, and losing faith in the system. We too were then told my husband possibly had ALS. She needs to take charge and read and learn and question. Our tail chasing helped immensely. And I know from meeting other patients in the medical day care with rare autoimmune diseases that many started the ball rolling toward receiving treatment by doing their own internet research–as the doctors were at a stalemate. Just my two cents after being disillusioned by the medical system. Knowledge is power. And the people who ask intelligent questions after doing research, do get action.
Laurel

Hi shrimpbox, my husband was diagnosed with CIDP four years ago. He is getting worse not better. He went from the drop foot to using a cane to a walker and now he is in a wheelchair. I quit my job also because he would fall when I had to work late at night. He is on medical leave at the moment because he just had surgery on his foot a partial amputation because he had gangrene set in. I also sometimes think my husband is dying. We have been to 2 differant neurologists, they said he had cidp. The last neurologist sent us to Southwest Medical in Dallas. All they wanted to talk about was his diabetes. We already have an internal medicine Dr. so they were no help at all. He did not go back. They have done the plasmaspheris exchange. He has done IVG they have giving him cellcept nothing is working. I just asked the neurologist if my husband has ALS, he said no. I just do not understand why he is getting worse. He is having all the same problems your husband is having. All we do right now is control his pain. He takes lots of pain meds. He said it feels like his body is being shocked all over if he did not take them. I know what you are going through though I lay in bed and cry at night when he cannot see me. I am going to research that disease POLYARTERITIS. You may send me a private message if you want somebody to talk to. Sometimes I feel like I have nobody to talk to but these forums. My husband does not let anybody know how much pain he is in except me.