September 16, 2018 at 5:31 am
Hi Guy’s, wondering if anyone can advise. Long story but been on and off for years Legs feeling week, then arm and so on… doc’s have no idea… the main thing is its both sides at once, so MS etc are more or less rule out?
Anyway, weakness in my Abs has resulted in a split.. so 2 x 3 packs… and we’ve gone from there… through my mid section, diaphragm etc and now into my back where weakness is going up and down.. I’m strugling to walk now with lower back pain, burning spins, stiff shoulders and much more.. arms legs weak,,, memory, thinking issues etc… rest helps and better AM, then get weak over the day…
Doc’s have no idea.. been for all the tests except lumbar… any thoughts anyone?.. can be more detailed if these ring any bells with anyone… biggest problem for doc’s is its started on my middle?… and I’m told that just does nor happen…. hello… here I am 🙂
September 17, 2018 at 9:23 am
Diagnosing CIDP and related conditions can be challenging for even the best Neurologists. Here is a very good explanation of the condition, how to diagnose it, and how to treat it. I hope you find it helpful:
September 17, 2018 at 4:41 pm
Thanks Jim for your reply.. you see, it says it in the first few lines… ‘weakness in arms and legs’
Where as mine started with a weakness in the core (Abs) and has moved through my middle into my back… all the time I’ve had the fealing of weak arms and legs, but not the prime issue… I’m wondering if these nerves are just in the arms and legs, or are they in your core also.. so could it be possable to start in your middle?… I have no idea.. problem is, neither do the doc’s?…
I’ve been forwarded the helpline number in the UK so may give them a call AM and just have a chat…
Strange thing these types of issue.. and everywhere you read its saying its not understood!… I’ll make the call… wish you all well and thanks again for your input… 🙂
September 18, 2018 at 3:00 pm
I did not have a textbook experience with this disease. My GBS/CIDP started as a knot in my stomach, grew to the abdomen, moved to my back and rear, then down my legs and up my chest, down the arms, until I was a quadriplegic. Then the MFS cut into my face. Later the condition began to affect autonomous muscles in my lungs and heart.
Several so-called experienced folks have told me I had something other than what I have because my disease progress was not “normal”. Hogwash, I now know starting in my midsection was normal for me.
My condition today would be much improved had I started with 3 days of Plasma Exchange before moving to IVIg (IVIg never did anything for me). This way the attacking T-cells (that don’t properly recognize ‘self’) can be purged before IVIg stops the Autoimmune system from producing more mutated antibodies.
I can’t say what might be best for you, but if they offer you a choice between PE and IVIg I would start with PE.
September 18, 2018 at 4:15 pm
Hi Jim.. how are you now… hope you’ve recovered some as these types of things go, at least there is some potential with recovery?… hope you’re doing well!
And many thanks for the advice.. I’ve been told twice now that there are no neurological conditions that can start in your core.. so I just need to do more exercise!!
Bearing in mind I’ve been going to the gym for 10 years 3 times a week to stop me aching… I’m not sure more exercise is possible…
But I’m at a point now, where the more I do, the worst it gets.. or so it feels that way.
It’s been in my front for a year or two, gradually getting worst.. I’m sure I could feel my diaphragm become weak, my breathing and throat tight, some hot pain mid spine and then my back started clicking and crunching… sometimes it won’t as it just feels tight, other times I can crack it for fun.. but then a bit of a step change as I felt it going up and down my back… it’s got as far as in-between my shoulder blades, and down as far as my backside, but at the bottom of the back, it’s like inside and I can’t stand too long now as it hurts like a cramp feeling… even walking is starting to be a problem… also mid back, its moved away from both sides of the spine, to the bigger muscles both sides… so even gym work I’ve done for years hurts after now? Also sitting.. the two bones at the top of your legs in the bottom kind of hurt as the dig into the seat??
Hands and arms feel heavy and working at let’s say 85%.. legs also heavy… but if I go to the gym, I can kind of push through it or at least still I stop… breathing can be hard also…
Also, the amount of effort required, it’s like my muscles a seizing up.. start off to the garden for a day’s work.. 30 mins in I’m kind of out of breath or tired, and needing a rest.. can also sleep for fun?
One big thing I noticed is it comes and goes… like it cycles a bit but is progressively getting worst.
I did describe it to the doc’s once over like a gang of bugs in my muscles making them stiff.. every so often they would move on to the next set, easing where they had been, but leaving it 10% depleted… Think the doc’s think I’m mad LOL…
Does any of this sound like the problems you or other have with this disease?… also, mild tingling, numbness at times… just on my finger ends, feet or face… but I’ve put this down to anxiety?, limited concentration, don’t enjoy my hobbies and more, thinking, fog, memory etc.. all not what they used to be… slight head ache AM at the back of my skull where it joins the spine… always better in a morning and things get tired out as the day goes on… that said, with back ache, sit for a while and I’m off again?
Sorry to put so much, but I’m kind of relived to find someone in a similar position. Not that I’d wish this on anyone and hope you can get some recovery from it! But I was just being told that this does not happen.. but for sure it’s happening to me and I’m not going daft.
As I say, sorry for going on, and you may read this and say it’s nothing like you experience, but it is something I think I need to suggest to the doc’s and see if they agree? May be get them to do a tap as everything else they have done shows nothing… but there again, I’m going weak in my core.. so why push and pull my arms and legs!!
Thanks for your time Jim.. much appreciated… John
September 19, 2018 at 8:48 am
The following statement is buried way down in the article at the end of the link I gave you:
“As many as 40% of GBS cases in the United States may be triggered by Campylobacter infection.”
September 19, 2018 at 8:48 am
John, current research is finding a connection between certain gut bacteria and GBS/CIDP. You may find this article useful in helping to educate your experts:
The Campylobacter bacteria is food born and is a know trigger to some who suffer from GBS/CIDP. The CDC has a good amount of info about it here:
Good luck with your diagnosis and hopefully quick treatment to help you.
September 19, 2018 at 4:29 pm
Thanks Jim.. took a look at your profile last night… so I now see what happened to you … Wow, I can’t imagine what you went through!! I wish you the best on your recovery and thank you once again for your help here.. I will indeed read and take this info with me when I see the doctor next week…
September 26, 2018 at 1:46 pm
Would anyone else have any thoughts on this?.. if it could be CIPD.. or know of anything more fitting?… many thanks… John
September 28, 2018 at 1:34 am
You need to get the spinal fluid test. If it is positive, that would be a good indication of CIDP. If it were negative or not conclusive, it still could be CIDP or something related. Neuropathies are sometimes difficult to classify. I was diagnosed as CIDP, but I am atypical. There is a lot of variation.
September 29, 2018 at 2:44 am
Yes, thanks for that… I have 3 things left to do
Spinal tap, brain scan and nerve biopsy… think these are the only things not done to date… I’ve talked with the the doc on these, but as Neuro say its nothing related to this, he’s not interested… will have to keep pushing..
Sat here now, mid back burning, lower back dull ache and weak… lets see how the day goes … got to keep smilling 🙂
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