Little background…had a total colectomy(removed entire colon) due to severe diverticulitis on 10/25/12. Came through surgery fine. Sometime afterwards, noticed my walking seemed a little off. Right foot and leg felt really heavy. Fast forward to today. Can not walk without assistance, both feet are numb with tingling. Cold one minute and burning hot the next. Feels like walking on hot coals. Shooting pain in legs. Right hand and arm are becoming very weak also. Went to Neurologist and he did all the standard test. Said I had severe motor and sensory nerve damage. He is pretty sure I have CIDP but is not willing to rule out ALS quite yet. Have a lumbar punch and a nerve biopsy scheduled for next week. What are your thoughts?
Hi TC welcome to this group. It has helped me a lot. I think you need to wait for the tests to be completed. I am a great one for leaping ahead and with CIDP I have learned to slow down and get as much information before hand so I am able to ask questions of the Doc. You can worry yourself silly with the wrong info. Just be in the best shape you can be in health wise and keep positive in your out look. Good luck, M
I was not diagnosed with CIDP til I had the EMG, and then was followed up with extensive blood work and a Spinal Tap. Still awaiting results for those. My MDs are on vacation. :( The Neuro who did the EMG said I didn't have ALS, and apparently he could tell by the EMG? I don't know why I had to have the Spinal if the EMG already shows CIDP, hoping it will show me why I have CIDP. I've had multiple surgeries over the years without these side affects. Mine just sort of gradually crept up on me. I ignored the minor symptoms I've been having until I couldn't any more. I took a fall and hurt my back. Xrays were negative for anything broken, but the MRI did show a bulging disk. My other symptoms, though, did not coincide with just a bulging disk, so they kept digging and found CIDP. My right leg just went totally numb. I got up in the middle of the night and fell. I could not feel my leg at all. I could move it. I could see myself moving it. But it was like it was someone else's leg. Then it began to change to feeling like soap or plaster drying on my leg and cracking. or feeling like it was too tightly wrapped with an ace wrap... and my other leg followed suit within a few days so it's both sides now. I can still walk, with out shoes it's not too bad. But with shoes I can't feel the floor or the ground, and I need a cane to maintain my balance. Good luck to you, and keep us posted. ~ Sis
Sis and Madonnart that you for the welcome and for replying to my first post. I’ll be the first to tell you I’m a little frightened right now of the unknown. I read one post and get encouraged and then the next scares the heck out of me. I think the fear of not knowing has taken its toll on me. I believe my Neuro Dr is doing every test possible to clearly identify my problem. From my regular MD to meeting the Neuro dr., and all the testing has occurred within the last two weeks. I should be thankful for that in that I see it takes others much longer to be diagnosed. I’m just ready to start some type of treatment. Finding this forum has given me the info I needed to make intelligent decisions concerning my future. I’m a 60 year old, wife, mother and grandmother and I refuse to GIVE UP!!Got way to much to LIVE FOR! IM TO BLESSED TO CONTINUE TO BE STRESSED!
I don't think you need both tests. The nerve biopsy is supposed to be the one that tells the complete picture. I wasn't tested for ALS, but I think the lumbar is to rule out MS. I could be wrong I'm not a doctor. I was told that neuropathy can be brought on by trauma (such as a surgery). Mine developed the same way and I am now in year 4 and still trying for definitive diagnosis.
i am in year 4 of this dam stuff and know how much the pain can dictate your life. The fear of the pain and unknown have been like a slow torture and it finally came to a head for me this past week. Long story short is we have to hold on to the good that is left, you are right to count your blessings. But, you are also right to be scared. There is nothing wrong with that. This stuff is scary and no one seems to have any answers because everyone's experience is so different. We can only hold each other up and take it one day at a time. I am 55 and have had this since I was 51. It has gotten progressively worse, but I am going to start handling things from a point of strength not weakness. On the days where the pain is a 4 then I do whatever I can. On the days its a 9 or 10, I take my meds and stay in bed if I have to. Ebbs and flows and learning to go with it is what I am trying to do.
Teecee said:
Sis and Madonnart that you for the welcome and for replying to my first post. I'll be the first to tell you I'm a little frightened right now of the unknown. I read one post and get encouraged and then the next scares the heck out of me. I think the fear of not knowing has taken its toll on me. I believe my Neuro Dr is doing every test possible to clearly identify my problem. From my regular MD to meeting the Neuro dr., and all the testing has occurred within the last two weeks. I should be thankful for that in that I see it takes others much longer to be diagnosed. I'm just ready to start some type of treatment. Finding this forum has given me the info I needed to make intelligent decisions concerning my future. I'm a 60 year old, wife, mother and grandmother and I refuse to GIVE UP!!Got way to much to LIVE FOR! IM TO BLESSED TO CONTINUE TO BE STRESSED!
Just got a call from the nurse at my Neuros office. The MRIs and the spinal test were all normal. Does that mean no ALS?
I don't know. You need to call whichever doctor recommended those tests and ask them that specific question. If they say No, ask them which test will prove or disprove that condition.
Teecee said:
Just got a call from the nurse at my Neuros office. The MRIs and the spinal test were all normal. Does that mean no ALS?
Agree with Lorrie... Make notes of specific questions you want to ask him. If he does not know the answers, ask where you can get those answers. The trouble is though. From everything I've read here and else where ( where ever I can find information ) We are rare. Each of us is unique. Some may share some similar symptoms, but many of us are totally different. My MD told me and the Neuro that did the EMG told me, that there were actually over a 100 different things / diseases that can cause us to get CIDP. And there are times when CIDP is in itself... it's own disease. Very little is known about it. That's why this site is such a blessing for us to share information and learn as much as we can. Information we can take to our Dr.s and have them investigate. I'm new to this, and I came here looking for answers, much the same as I am sure you did. And I too found things that frighten the dickens out of me. I read that this is not life threatening... I was up lifted... and that we can fully recover. Then I read that there are folks who have been dealing with this for years... many years. Some are in wheel chairs and some are bed ridden. I don't know if it's from attitude? Giving up? Or actual physiological reasons for the decline in physical abilities. But just reading them opened my eyes. Made me thankful that I can still walk. Even if I have to use my cane to maintain my balance. You will find as you keep searching here though, that you are not alone. We are not alone. There are others of us going through the same things. We can inspire each other. We can console each other... We can share experiences and stories... we can share jokes! We are not defined by CIDP. It's just something we have. We are still who we are. And when we, ( I ) start to get that through my head... my days go much better. I hope yours do too. Stay in touch. ~Blessed Be.
Very well said Sis! Thank goodness we have this forum!
Sis said:
Agree with Lorrie... Make notes of specific questions you want to ask him. If he does not know the answers, ask where you can get those answers. The trouble is though. From everything I've read here and else where ( where ever I can find information ) We are rare. Each of us is unique. Some may share some similar symptoms, but many of us are totally different. My MD told me and the Neuro that did the EMG told me, that there were actually over a 100 different things / diseases that can cause us to get CIDP. And there are times when CIDP is in itself... it's own disease. Very little is known about it. That's why this site is such a blessing for us to share information and learn as much as we can. Information we can take to our Dr.s and have them investigate. I'm new to this, and I came here looking for answers, much the same as I am sure you did. And I too found things that frighten the dickens out of me. I read that this is not life threatening... I was up lifted... and that we can fully recover. Then I read that there are folks who have been dealing with this for years... many years. Some are in wheel chairs and some are bed ridden. I don't know if it's from attitude? Giving up? Or actual physiological reasons for the decline in physical abilities. But just reading them opened my eyes. Made me thankful that I can still walk. Even if I have to use my cane to maintain my balance. You will find as you keep searching here though, that you are not alone. We are not alone. There are others of us going through the same things. We can inspire each other. We can console each other... We can share experiences and stories... we can share jokes! We are not defined by CIDP. It's just something we have. We are still who we are. And when we, ( I ) start to get that through my head... my days go much better. I hope yours do too. Stay in touch. ~Blessed Be.
Lorrie what treatments have you had or what medication are you taking?
More MRIs than I can count on brain, neck and whole back. Ct scans on same. Nerve conduction study which is EMG without needles. Nerve biopsy. For the neuropathy pain I take Nucynta and Percocet,which are both opiates. Baclofen, muscle relaxer. Klonopin, helps the anxiety pain produces. Lyrica, which is supposed to help nerve pain. What do you take?
Have had MRI, EMG, nerve conduction study, spinal tap and will have a nerve biopsy on Tuesday. Only over the counter pain meds so far. Neuro dr waiting to get all results before starting any kind of treatment.
Did the nerve biopsy hurt during and afterwards?
No, but I demanded to be put asleep. They used twilight sleep. I have no feeling in my feet past my ankles, so I had no pain at all. Where are they taking the nerve from?
Right above the ankle on my right foot.
That is where mine was done. Can you feel your feet?
How big was your incision? Toes and front part of foot are numb and tingley.
About an inch and a half. Well I am a lot more numb than you, but you still get pain killers and you will be ok.
Have you had any treatments?