How do you define muscle weakness?

General General CIDP Discussion
1

Hi everyone, I hear a lot of you have muscle weakness, (not my only symptom) but not sure I understand what you mean. I don’t have a diagnosis yet. My symptoms started almost 7 weeks ago. My muscles get tired very fast. If I wash the window my arm will be tired 5 or 6 times faster than they would have two months ago. One flight of stairs usually gives me a burn in my muscles. Does anyone here experience this? I have an MRI on Thursday. So far everything has come out normal.

It drives me crazy waiting to know what’s going.

Thank you all for your input.

2

I just want to add that the burn feels like the lactic acid burn you get when you exercise one muscle to exhaustion. This happens with normal activity.

3

I’ve had CIDP for 8 yrs. my condition started like yours. Muscles would get really tired quickly. I was using greater effort to do tasks causing greater muscle and general fatigue. I had pins and needles in my hands and feet also. My balance suffered because my leg muscles couldn’t support me correctly. As I progressed the weakness worsened until I was unable to lift my arms, get out of bed, roll over, or walk. My limbs felt like dead stumps of concrete. Many things can cause weakness but do not let them stretch this out. You can decline very quickly. You are at about a 2-3 on a 10 scale. In Dec. I was at a 9 and now am about a 3-4 on the scale.

4

Jewels,

What you are describing is (to me) muscle weakness. I fatigue easily, my legs don't want to walk as well and I cannot run. So, my (calf) muscles don't want to support me when I take a step (plantar flexion).

Someone on this forum disagreed with my comment of "diagnosis of exclusion" comment. But, that is exactly what my neurologist called it when he did every imaginable blood test (all of which were negative) until he made his diagnosis of CIDP. I was positive only for the spinal fluid and one inflammatory marker (CK). Along with my symptoms this allowed for the diagnosis. Best wishes. mike

5

Well, what I first noticed was that it was difficult to walk up stairs. It felt like I was carrying a 50 pound sack of cement, and my legs barely had enough strength to lift me from step to step. It got worse and worse, until it was difficult to walk, to lift my feet, even on the level. Eventually, my legs no longer had enough strength to hold me up at all, and I was unable to walk.

In the worst stages, it also affected my arms, and I could barely lift them to the level of my head.

(Of course, it is not actually muscle weakness, it is the nerves not sending the signals to the muscles. But in actual practice, that is indistinguishable from muscle weakness.)

Bill

6

Exactly Mike, it is a diagnosis of exclusion. Many blood test, MRI, spinal fluid, EMG, and sometimes nerve biopsy. Although her EMG NCv should be abnormal for a positive diagnosis. Not everyone has an elevated spinal protein but that is usually the case. My spinal fluid did not show increased proteins so I was in a smaller percentage. Good luck Jewel. Pop on if you have more questions. Sorry you have to be here.

7

Hi Jewels. You have described what I feel as far as muscle weakness goes. I have MADSAM Polyneuropathy, which is closely related to CIDP. When I get up from a good night's sleep I feel pretty good..and I walk ok and even have a bit of energy. However, when I've been on my feet for an hour or so, I start feeling weaker..and the weakness progresses as the day wears on. By the time I go to bed, I'm dragging..and more so if I did too much during the day. The muscle weakness itself makes my upper and lower body feel heavy, wooden, like jelly. Feel like my knees will buckle at an moment. I also have nerve pain, which is unpredictable and comes and goes quickly; hands, fingers, arms, legs, feet and toes. Just last night my feet burned, especially on the bottom- first time I've noticed.

I hope this helps you and others. Would also like feedback re stair climbing. I have not attempted that yet. It's maddening when all tests come out ok. An MRI will rule out some things, but if what you have is GBS or CIDP..or madsam P (very rare), the only tests really needed are the lumbar puncture (to check the level of protein in your spinal fluid, nerve conduction test and the standard neurological testing for weakness. I was in the hospital for two weeks. They did every kind of test except the ones I've mentioned her. Even though my symptoms of constant pins and needles, burning pain and the inability to walk without the walker and someone to hold on to me, they found nothing. I was relieved that I didn't have anything serious (oh yeah?), but sooo frustrated that they could not find a reason for my symptoms. One doctor thought I needed a psych evaluation. I was livid and was able to express feelings. Don't know thatit made a difference to him, but it made me feel better.

Good luck with all of this. I hope they diagnose you soon, so you can start treatment. Right now I'm 60mg of prednisone daily, as well as rounds of IVIg infusions every month. So far there is very little difference/improvement. Many have been improved greatly, and- if you have one of these nerve diseases, I hope you will see improvement.

God bless you,

Linda

8

I think there is a difference between extreme fatigue, myasthenia and paralysis.

You are right about the meaning of muscle weakness.

Most of peplo with diagnosed CIDP it is in a wheelchair with myasthenia and paralysis.

9

Only a few hours ago I was discussing this with my GP. How hard do I push myself? (In relation to getting exercise when I quickly hit that pain/endurance barrier). Sure - I can keep going but it is past that barrier and it does not feel all that great! His point was (as someone mentioned) - it is not a muscle problem - it is a nerve problem. Pushing too hard on that nerve problem may just be asking for trouble.

So - back to topic - what is "muscle weakness"? I would tag that as that point where it hurts to go on - take care when you get there!

10

It took several months of leg pain, numbness, and difficulty walking before my G.P. referred me to a neurologist. He had suggested I try Yoga. My neurologist ordered several blood tests, EMG, and MRI. I was diagnosed with CIDP and positive Anti-Mag. I was hospitalized for 3 days to start the IV Ig and run additional tests.(I also had a spinal tap) I have elevated protein levels in my spinal fluid and blood.The sooner you start treatment for CIDP the better your prognosis is. My doctor wanted me to try steroids as well as the infusion every three weeks when the infusion was not helping as much as she wanted. I don't want the effects of steroids, so I am trying the infusions every other week for now. I also have been known to push the exercise limit and have had to pay the price. Good luck with your tests this is not an easy diagnosis to make.

11

Hi everyone, thank you for all the insight. I don’t see my neurologist until July 12. Somehow I doubt I’ll have any new information then either. I hope things don’t get too far along before I know what I have.

nancy said:

It took several months of leg pain, numbness, and difficulty walking before my G.P. referred me to a neurologist. He had suggested I try Yoga. My neurologist ordered several blood tests, EMG, and MRI. I was diagnosed with CIDP and positive Anti-Mag. I was hospitalized for 3 days to start the IV Ig and run additional tests.(I also had a spinal tap) I have elevated protein levels in my spinal fluid and blood.The sooner you start treatment for CIDP the better your prognosis is. My doctor wanted me to try steroids as well as the infusion every three weeks when the infusion was not helping as much as she wanted. I don’t want the effects of steroids, so I am trying the infusions every other week for now. I also have been known to push the exercise limit and have had to pay the price. Good luck with your tests this is not an easy diagnosis to make.

12

Hello I was told I had sensory Polyneuropathy, and I been living with a lot of the same things as most of all of you.

Right now I am having lots of cramping of both legs, feet, toes, and all the way up to my middle of my body. I been having this worse so badly right now I can't walk well at all..the back of my right knee is out kind hard to explain...but it is not working....

I have only hydroconde 7.5 for my Pain...the carmping is awful so I got something off the counter and been eating it to stop the cramping part.

I don't have a neuro doctor right now....I try to get one early this month...I do have health insurance but I found that a lot of the doctors do take it but I am waiting for a referal to antoher neuro. It is hard with my united health care plan the one I have is limited.

When I was in the ER for another problem the ER doctor I saw kept asking me if I had MS? And was I tested for MS? I told her I have no idea if I was....but a lot of MRI's....that is all I know. So the ER doctor she said then they probably did if they did those MRI's.

But as far as all you discribe walking up the stairs etc. I have to do that all the time I live in a 2 story home....I have trouble not falling and other times I do ok. My husband gets mad at me for saying ok....he sees me worse....

But tomorrow morning someone is coming out to help with the safety of our home and help us make it safer for me.

I telling you this because I feel like I am getting worse....the legs as I write this are both numb and I can't move them....

I wish I knew how to really get help.

thank you for taking the time to read.

13

My daughter has MS. Her's was discovered after a "brain" MRI, you didn't say what kind of MRI you had. I have CIDP and experience many of your symptoms. Physical therapy has helped with balance and stretching. I haven't found anything to take away the pain, but sometimes warm compresses help with the spasms. Hopefully your visit with a neurologist will help. I have also been making an effort to drink more water. I wish you well I know it is scarey.

Nancy

14

Hi everyone, thank you for giving me some more insight. I had my MRI (without contrast) of the brain. They said it was normal. I still have to wait almost two weeks to get to the neuro. I hear some people say they were diagnosed quick and others took a long time. It seems like there are not enough neurologists out there to accommodate getting in to them without a long wait.

My weakness seems to vary in intensity. So do my other symptoms. This all started after i had two vaccines hep b and tetinus.

I noticed this recently. If I stand up and put my arms straight down to my sides. Then I put my left hand on my neck between my and right shoulder. Then I raise my right arm to head level straight out to my side . Then I lower my arm back down to my side of my hip. On the way up my movement is very smooth. On the way down its jerky. Quick little jerks all the way down. It’s the shakeyness that I have been feeling when I do things. I felt like I had a shakeynesss inside of me and it was coming from my arm movements. this is true of both of my arms.

I also have episodes mostly every night where I feel like my tounge is numb and swollen a little. It’s scary. I don’t know if it’s in my head or not it almost always happens when in trying to sleep at night. In the beginning my arms and shoulders and neck were very achy every day. On and off the felt incredibly heavy. The numbness and tingling was never very strong, just annoying and intermittent. My first day of my legs have in any numbness came a week and a half ago. It was from my feet to my knees and they were stiff.

I have also found tender spots on my skin that feel like a bruise but nothing is there. Most are not in the places that are considered for fibromyalgia. Does anyone here have the tender spots?

Strange thing is I didn’t feel so great yesterday and the by evening. I was feeling pretty normal except for the weekness. I have had this happen periodically.

This whole thing is so strange and terrifying. I keep thinking and searching the net trying to figure what it could be.

So far I’ve come up with everything! Lyme, west niles, CIDP, MS, ALS, Mono and a bunch I can’t recall now.

Oh yeh, my reflexes are brisk + 3. That part makes me rhink its not CIDP. At least they were 4 weeks ago. I also have Hoffmans reflex. Which I’ve read is not a reliable test. Until i read my doctors report and then check it on the web I thought those were normal things and all was good.

I have appointment with rumitist on tuesday. Don’t know what he can do for me. I got in to him while neuro was on vacation do he could run some other tests. He orders the MRI.

Have a nice weekend everyone! In hoping you all feel at your best and can overcome your illnesses.

15

I see above I said put my hand on my neck it should say put my hand between my neck and my shoulder.

16

Hello nancy...if you are addressing me thank you, I had MRI's from my brain all the way down....I never really was told anything about them....some was done last year by the Neuro doctor I had at that time...some I had done before for falls etc... I just can't say for sure just that the ones the Neuro doctor did I did ask if he was sure about which neuropathy I had...see my regular (pcp) doctor thought it was diabetic neuropathy and It turn out not to be.

Still I been to MDA clinic in Phx, az and they did another emg only one my one leg only? who knows why....except they were making sure I didn't have CMT. They could not fig out why my body wasn't kicking my muscles in...they were not when they use the pins to shock me...my legs wouldn't move.

Then they then said everyting was normal except the fact my musicles wouldn't kick in....weird.

They said that I had sometbhing going on at the level of the anterior horn cells and realted to a disorder above this anterior horn cells....and they said such as myclopathy, etc.

They went on and said they couuldn't rule out the possiblility of the chronic denervation in my muscles where they motor units could not be activated.

So that is all I know they sent me off and said they like to see me next year....and go see my org. neuro...which said he can't help me any more.

ruthie

17

Hello Nancy..sorry just took so long to reply back...I have MRI's of brain, neck, back and my knee and foot...

I have lots of problems with my Sciollios (S shape) with the verbras they tell me from these are leaking, bludging etc. Probably lots of my pain problems...except when I went to Barrows MDA clinic earlier this year they thought the problems was higher up...and they told me that I wasn't kicking in my muscles to activate. That was from an EMG with only my left leg and didn't know why I had drop foot on the left foot? Really didn't give me anything more. I have since writing this been in the ER/hospital for TIA's and they found something in my CT scan that they enlighten and called it something else then what I was told...but not sure about everything right now.

I saw a neuro doctor while in the hospital last week so I will be seeing him...yesterday I had another TIA and they just put me on blood thinners and Asprin 325 mg now. with my other pills. Yesterday I was told I have to have this out pathient test which sorry I forgot what it is call....but they kind of put a camera down my throat to look at my heart...I have several things wrong...several illnesses...but lately my legs are worse...I am still a mod of finding out what is wrong with me still....so many dieases look like each other...only so far have the serve sensory polyneuropathy. keeping fingers cross I will get help for whatever causing me to have all of these things going wrong...so hard like some of you have written how many doctors and how long it took all of you....thank you Nancy for the information....I wish you and your family well....God Bless



nancy said:

My daughter has MS. Her's was discovered after a "brain" MRI, you didn't say what kind of MRI you had. I have CIDP and experience many of your symptoms. Physical therapy has helped with balance and stretching. I haven't found anything to take away the pain, but sometimes warm compresses help with the spasms. Hopefully your visit with a neurologist will help. I have also been making an effort to drink more water. I wish you well I know it is scarey.

Nancy