First timer here looking for some support

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1

First timer here looking for some support.

Started two years ago where I had trouble typing with my right hand. My left bicep began to lose strength and muscle.

Went for an MRI and they said it was a disc issue. Cleared by an orthopedist, and he referred me to a neurologist.

EMG, nerve conduction study were inconclusive. Had some conduction block in my right arm but minor. Only nerve issues in my neck and arms. Back and legs were clear.

Dr. suspected CIDP and I had the spinal tap and bloodwork which were negative. Suspected multifocal motor neuropathy because of lack of pain. However, November last year began to have serious pain in my neck and arms and tingling.

Current symptoms:.
Loss of strength in my arms and hands. Loss of muscle primarily in my biceps/forearm. Twitching, mainly in upper body. Pain shooting down both arms. Bad tingling in hands and intermittent tingling feet.
I am lucky in that I can still take care of myself and my kids. I can get dressed and drive etc. Obviously, certain things are hard for me, but I make do.

Treatment:
Took four rounds of IVIG, between six – eight weeks apart. Helped with tingling and pain and a little with strength. However, my neurologist didn't think it was benefiting me and switched to prednisone. On 40 mg a day for the past for two weeks.


I am going to Emory ALS Center send, where I hope they can finally rule that out. (My nuero has had that "on the table" the whole time, which is made this experience absolutely miserable.) Put it this way, I know how I feel, and I don't think it is ALS.

Looking for any similarities to what I have for support. Thanks in advance for the help

2

I am a newcomer as well. Mine started two years ago. I was very tired, weak, and felt like I had a bad virus, except it

lasted a long time. First they thought I had crohns disease. So I had tests for that done. Then they thought maybe

fibromyalgia. Then I had MRI'S on my legs, back, full body cat scan, emg, nerve test, checked my brain to see if I had any

spots. I had high muscle enzymes and high liver count, so they did a liver biopsy. Then after dragging all that out over the

course of two years I was referred to another neurologist in Houston who new something wasn't right so she did more

blood work, emg, nerve test, and a muscle biopsy. After all that she said you have cidp. I did 5 ivig treatments. Went

back for follow up and she said no change. I am weak in my thighs, forearms and now going to my feet and biceps.

Reflexes are ok but my left arm doesn't move properly when I walk, it just kinda hangs there. Didn't know that until she

told me. Started back with 2 more ivig treatments a month for 3 months and after the first two a week ago still nothing.

Getting very frustrated. I work for myself in my shop with my brother making oilfield equipment, (machinist) so as you can

imagine that is going very well. I can work half a day but then im down for two whole days. Not to mention my wife is 8

months pregnant and I have a 2 year old daughter also. So with all that said I know how you feel. I just turned 30. I am a

6'4 260 pound man who cant even mow his own yard or get up from sitting down without pushing myself up. I have

muscle spasm and when I do anything that requires using my muscles I feel like I just pulled them. Hopefully this makes

you feel not alone and I hope we both get the treatment we need to help us.

3

Good Morning Rm... Welcome to this site. There are many here who experience all the same/different/back and forth/strong/slight/ crippling/ troublesome/drive you crazy things that you do. You are in very good company here. We are all in this together.

My own personal case is only now coming to more vivid light for me as I remember back over the years. I've been a Rehab/CNA for 30+ years. I've always worked and its a very physical job and I loved it. I worked hard, I was independent and took care of myself and raised my family. My bills were paid, roof over our heads... I fell back in November on my porch and hit down hard... took that day off work, then went back to work and continued to work because that's just what I do. Over the next month though, I felt my backside getting numb and over time it moved/radiated around to the front of my abdomen and down my left leg until it over took my whole leg and it began to feel like it was wrapped too tight with an ace wrap... swollen... red. while the other leg remained the same. One pant leg was tight, and the other loose. On the morning of Dec. 4th, early, I got up to use the bathroom and flat fell on the floor. I could not feel my left leg at all. I could move it... I could wiggle it.. I could see myself doing it, but my leg couldn't feel my leg. I went to the Dr. and got xrays, and they ordered an MRI. That brought back results of a bulging disk in my low back. From there I was also sent to a Neuro Specialist and underwent all the battery of testing that they do. It was the EMG that determined the CIDP. I had the spinal tap after that and that came back clean, but I still have CIDP. I am on Prednisone now, for this month anyway. 60 mg/day. I take mine 20mg / 3x/day. It's relieved the pain in my joints that I didn't realize I had til they were going away, and made me feel generally better. Still have the numbness and tightness in the legs ( both sides are now involved) still have the back spasms and pain and am on pain meds and muscle relaxers for that as well as calcium and vitamin D. This being said, and with a lot of time on my hands, I've spent hours remembering things.... over the years. My Neur said that I have had this for a while, and I'm thinking no... just since the fall. But in looking back, he was right. The symptoms were just so vague that there wasn't really anything I could definitively point to and say there! This is wrong! I have had carpal tunnel surgeries on both hands... I've had three knee surgeries over the years, among other surgeries. I've had clumsy just can't stay on my own two feet... blamed that on weak ankles. And several bouts of tendonitis in both elbows. I worked hard for a living lifting people and assisting them to walk for many years. It had to have taken it's toll. But there was still nothing I could just take to the doctor and say here I am.. check this out. I am 54 years old.. things don't work for us 54 year olds with out some wear and tear so I just kept plugging away til that December morning when I was literally stopped in my tracks! Since I've done my trip of rediscovery... and learning what I could about this disease. ( had never heard of it before this happened.) I've come to understand that I probably have had this for years and didn't know it. My hands frequently fall asleep.... have to keep shaking them out. My fingers will contort in strange positions without warning and I bend them back and shake them off again. I am weaker... my grip is not as strong. I am walking... I do okay in the house with out wearing shoes. I can feel the floor with out the shoes on, but It's a whole other country with shoes on for me. And that makes no sense to me but yet it does. I use a cane when I am out and about outside. Dr. wants me to use the walker to prevent falls, but that thing is more a hinderance to me then help. I do use it if I am down on the floor to assist my getting back up again. but that's about it. If I have to be outside for any time, I will take it out with me and have it handy, but I am more comfortable using the cane. Maybe part of it is my vanity? I don't want to be seen using a walker? After all these years of preaching to my patients.. I have to follow my own medicine and that's a tough pill for this old girl to swallow. But back to the prednisone, again, I do feel better, but I am still reserving concerns with it. Initially it was the side affect of the weight gain I feared. But since on it, I've dropped 10 pounds. Granted, I'm very careful with my diet and stay more with veggies and fruits and only a little meat and keep caloric intake down to 1000-1500 a day. But I also have another issue. For the last 20 years or so, I've had a cyst on my shoulder. It's just been there. Had it looked at many times... just a fatty tumor size of a pea... if it don't change...don't worry about it. I didn't. The second day after on the prednisone... it started to itch.... within 4 days it doubled in size... was red... angry and growing... HOT. Went to the doctor... and was told they didn't think it was due to the prednisone, but put me on Keflex for it and I go in today to get the cyst removed. I come online and in another site, found a man who was also on the prednisone, 60 mg/day in the process of getting tapered and down to 30 mg /day and his whole body broke out in acne. He showed pictures. And they said it was a side affect from the prednisone. This has me wigging, and I will be taking the information with me today to the doctors office. One thing I have done and will continue to do as I see any of my doctors, is I INSIST that everyone is on the same page. All of them share information when I visit so they all know what's going on. I don't want anyone in the dark, cause that leaves ME in the dark. I don't know if this helped you at all, but I for one am comforted in the fact that I can come here, read through similar stories, gain insight, and answers from folks who are going through the same or similar things I am. Again... I welcome you to this page... feel free to drop me a line if you would like to just chat. And best of luck to you. ~ Sis

4

I'm new here too. In fact, this is my first post. I'm an X-ray tech, hence the user name: i c thru u, Byron we are going throuh the same thing. They thought I had Crohn's at first too. I was hospitalized about 18 months ago with extreme weakness, really bad headache, and danderously low blood pressure. After 4 days inpatient the only thing left in their differential was statin use. I was taken off statins and, after about 3 weeks, was able to return to work. I have had about 8 IVIG infusions this year but I'm not sure at all if they are helping. I am sitting at home right now, when I should be at work, because my quads hurt so much and I can barely get my rear end out of the chair. I have a follow up consult and EMG later this month.

As I said, I am an X-ray tech by day (to pay the bills) but my true calling is being a christian priest. I have been doing that work for nearly 40 years and I know one thing... don't ever lose faith. I have caught myself slipping into depression with this disease. We are all in this together and I don't mean CIDP people, or GBS people, or XYZ people. I mean every living thing on earth is connected by one common denominator whatever you choose to call it. God, Source, Spirit, Soul, Creator, it's called by many names. What It is called doesn't matter; what It is does. What helps me is connecting to the inner Christ Consciousness (what I call it) through meditation. I am not preaching here believe me. I am only sharing what helps me. It's all well and good if people think I am full of beans. We all cope in our own ways.

Blessings to All.



byron44 said:

I am a newcomer as well. Mine started two years ago. I was very tired, weak, and felt like I had a bad virus, except it

lasted a long time. First they thought I had crohns disease. So I had tests for that done. Then they thought maybe

fibromyalgia. Then I had MRI'S on my legs, back, full body cat scan, emg, nerve test, checked my brain to see if I had any

spots. I had high muscle enzymes and high liver count, so they did a liver biopsy. Then after dragging all that out over the

course of two years I was referred to another neurologist in Houston who new something wasn't right so she did more

blood work, emg, nerve test, and a muscle biopsy. After all that she said you have cidp. I did 5 ivig treatments. Went

back for follow up and she said no change. I am weak in my thighs, forearms and now going to my feet and biceps.

Reflexes are ok but my left arm doesn't move properly when I walk, it just kinda hangs there. Didn't know that until she

told me. Started back with 2 more ivig treatments a month for 3 months and after the first two a week ago still nothing.

Getting very frustrated. I work for myself in my shop with my brother making oilfield equipment, (machinist) so as you can

imagine that is going very well. I can work half a day but then im down for two whole days. Not to mention my wife is 8

months pregnant and I have a 2 year old daughter also. So with all that said I know how you feel. I just turned 30. I am a

6'4 260 pound man who cant even mow his own yard or get up from sitting down without pushing myself up. I have

muscle spasm and when I do anything that requires using my muscles I feel like I just pulled them. Hopefully this makes

you feel not alone and I hope we both get the treatment we need to help us.

5

I am a one year member. Started with GBS. 4 weeks to diagnose, 5 weeks hospital physical therapy, 6 weeks home therapy, 6 weeks out-patient therapy, 4 weeks self therapy. Went back to work last August. I can walk with a cane, type and speak on the phone ( I am a res agent for an airline).

About 4 weeks ago - pain in left hip - had x-ray (no problem) pain moved to right hip - Had (x-ray) pain moved to center of lower back (had mri) no results yet. Can not work because I cannot walk. Will get results on Monday - going to PCP and then the neurologist - I am betting that it is just a flare-up of CIDP. I hope he can give me something to get me walking again -- I have lots of plans and projects to attend to.

I don't believe CIDP will ever go away completely - it will always lurk just beneath the surface. But I am going to beat it into submission.