Really worried

Hi all, I don’t have a diagnosis still but I am not afraid this is going to kill me. It started with small fibre neuropathy which is everywhere including my face. I now have muscle atrophy everywhere possibly bar my torso. I have awful weakness in my body and feel jittery if I do too much using my body. I am now having autonomic problems and heart palpitations and digestion issues.
I have had MRIs and emgs and needle in the muscle which all came back negative. Just had a muscle biopsy last week as I know this is happening and the tests aren’t showing it. I get results in few weeks.
I am 37 and a mum to a 4 year old boy. We live alone. I am terrified for him. I can cope with paralysis as long as I am alive for him as long as possible.
Has anyone here suffered muscle weakness and wasting everywhere and still survived for some time despite this? I cannot die yet. I accept paralysis and impairment, I just don’t want my son to lose me.

Hi Joanna, when did this start?

Hi Joanna, where are you located? Maybe we can help you find a specialist to see.


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Well like you I was really worried when I didn’t know what the hell was wrong with me. It took five years and three specialists to figure it out. Now I know it’s CIDP and have to live with that, note I said “live” with that. I guess I was luckier than you because I was 52 when this BS started, but I was told I had it all my life. Now I’m 68 and go for my IVIG treatments every four weeks and that’s it. Sure I have atrophy in my hands and left arm, the left is worse than the right, which really sucks because I can’t play my guitar anymore. You have to get to the point of saying; “Oh Well.” when there’s nothing you can do about it. I totally understand your age and your family concerns but as the old saying goes; When life throws you a lemon, make lemonade. Gary

Hi all, thank you for your replies.
I live in the UK and am fortunate in having been able to see the best specialist at a neuro centre in London. But I still have no diagnosis.
I think things were happening neurologically when pregnant with my son, that was just over 4 years ago. Things all progressed from there after he was born.
I had tried one 5 day round of ivig and they asked if I felt better afterwards-and I didn’t really. I just had pain mainly at that point.
I would like to know what I’m dealing with as once you know you can at least stop searching.
If this has happened at 52 I think I’d still feel cheated so I understand. I never thought cidp would take up to 5 years to diagnose. I agree with the make lemonade saying. I think as you point out its very frightening when I have to care for a little boy.
I’ve researched every horrible disease to try see where I fit in. I don’t know where that would be. I often felt cmt type 2 could be the reason but I don’t really fit the criteria and I understand it doesn’t come on so quickly.

I’m glad you have a good specialist on your side. I think many of our members struggled to reach a diagnosis- awful I know- but be persistent and stand up for yourself. You should read my post here.

Does anyone have an idea if one round of IVIG is enough to notice changes?

Hi Joanna,
I have similar issues, briefly went through a phase of progressive weakness which spread from feet upwards. Had months of shaky legs and couldn’t tell how hard to press pedals in car so couldn’t drive. Legs felt unco ordinated. I was stumbling as i didnt seem to pick my feet up high enough.
Progressed to feeling of heavy boot on one foot, all weird. I too thought i was about to develop something fatal. However two years later i am still here and none the wiser. All my tests were negative inc nerve conduction and emg. Neuro says small fibre neuropathy and its benign like its of no significance. Might not be to him but it has affected my bowel motility, bladder, sexual matters, and i now have gastritis and diverticulitis, which i believe is all linked. Plus some kind of raynaulds in hands and feet.
Hasnt got worse, in fact weakness subsided, but cold freezing and burning feet still there. Cant tell warm from hot with feet and lots fatigue. If i get in a warm/hot bath if my feet let me i have a huge loud drumming tachycardia
But dont think the worst , it may not happen, just eat as healthy as you can and do what exercise you can tolerate and research vitamins and minerals and keep plodding along.
My mother always said the creaking door hangs on the longest…

I don’t know what to tell you, Joanna79. I am pretty much going through the same thing, plus everything that pgf54 mentioned. I get the same lack of response from doctors. I am 73, this has been going on since my thirties. I did develop type 2 diabetes in 2003, so of course they want to blame it on that, but it started many years before that. They won’t address that fact, even though I produced documentation. They said it “would not result in weakness or paralysis”… I pointed out that it has ALREADY resulted in weakness, and at times temporary paralysis. They said no, I’m just 73 and out of shape and I need to exercise. How can I exercise when my heart rate goes up to 123, and my blood pressure dives to 80/50, just by standing up and walking across the room? I can do 3 miles on an exercise bike, sitting down, and I do, but just GETTING to the gym and parking and walking in and to the back of the gym to the bikes is difficult and dangerous. They tell me that I do NOT have CIDP, but other than the diabetes, they have no idea what it might be, so of course they insist that it IS the diabetes even though it started years before any hint of diabetes. My blood sugar has been in excellent control. I have kept my A1C down around 6 for years. I have had to go off the medication several times due to low blood sugars. They will not address the cause, other than that, and they are NO help when it comes to any advice for how to cope with it. They just said exercise more, and they gave me a little pamphlet on managing diabetes. I know more about managing diabetes than my family doctor does. That doesn’t help.

Joanna, not that it is any consolation but you are so lucky seeing a decent neurologist even if he doesnt provide answers. I was passed back and forth in country Western Australia and some of the Doctors i saw i should have reported to the medical board, including one so called specialist who fell asleep twice during my consultation, after a twelve hour trip to get there as i couldnt drive. I have been on a public wait list to see a neurologist for two years, i rang this week to be told they are just seeing 2014 patients , so possibly another 2-3 years.
The most common answer is stress, now i go armed with photos of my blue feet and say what pathophysiological response in anxiety causes blue feet lol.
Judmilla i really understand what you are putting up with, its like we have diagnosed diabetes and thats it , end of story. I know when mine all began it was all compounded by my first very bad attack of benign paroxysmal position vertigo (bppv) the Drs put all my symptoms down to that and wouldnt hear anything else.
Judmilla some of the research i have read indicates small fibre neuropathy may develop as a result of metabolic syndrome which i had, and some say even high lipids or triglycerides are enough to cause it to develop in some people. Also faulty glucose mechanisms. I always have normal levels of blood glucose but if i eat a heavy meal lots carbs and sugar i get palpitations and feel awful . Not sure if my body doesnt cope as i usually eat healthy food.? All just food for thought as i am told its probably ideopathic…

I love that saying, never heard that before. It did make me giggle. I’m sorry that you have also had such a hard time. I know that feeling of weakness when driving. I’ve had moments where I can’t feel how much in putting on pedal as weakness is so bad.
Thank you for replying xx

Judmilla, your story is so frustrating. I can only think it must be due to a complete lack of understanding about the nervous system for the most part. So much literature points to diabetes as a cause of neuropathies that they are probably desperate to find diabetes so they can pin everything on it. Your stories are so disheartening to read as it just shows how far behind we are in understanding this.

Pgf, I laughed in horror at your story of meeting the sleeping neurologist. It of course isn’t funny at all, you must have been so furious and devastated by it. I realise I am really lucky. The neurologist I saw on the NHS was a nice guy but he just wouldn’t investigate anything other than the ncv test so I know if I didn’t have private insurance cover I wouldn’t be as far as I am in terms of tests.
The best I have seen was a cardiologist who specialises in neuro issues like POTS. He said that doctors have historically written women in particular off with anxiety and emotional disturbance when in fact they have real severe neurological problems. Apparently guidelines for doctors on POTS has only just recently been produced.
Things keep getting worse, the weakness, the shrinking body parts, the twitching, the heart issues. I could not bear to be sent away to wait for years. I do not understand how they can do that. The system does not work, it has completely failed to leave you waiting that long.

Hi Joanna, wow, what a terrible experience. I think we all have similar experiences with our Drs. Without the sleeper. This CIDP is so difficult to diagnose but equally difficult to treat, with results to the most common treatments being inconsistent. It took 8 years to Dx CIDP in me. I had been operated with no relief so I insisted on a neuro consult.
My point is not about the diagnose or the treatment but rather it’s about developing a support system at all levels: family, friends, associates, church congregations, hospital support groups, and your child! We all need someone to hold our hand through the rough patches, everyone! We all need help when we can’t do what we used to do. We are here to support you on this involuntary journey. If you just want to query us or just let off steam, just say the word. Each of us have different gifts which may be of help for your ever-changing needs. YOUR YOUTH IS ON YOUR SIDE.

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For me, my 5 day loading dose corrected my foot that had dropped :blush:. About two weeks after I had it, my foot gradually started getting stronger and more controllable and is now back to normal :+1:.

That is wonderful new, Kellsk11!

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