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November 17, 2010 at 12:41 pm #9362
I wonder if anyone has experienced trembling in your hands accompanied by extreme weakness and fatigue in the arms? I was diagnosed with CIDP a bit over three years ago; have a full loading dose every twenty-eight days with solumedrol each day. It doesn’t appear that I am getting worse, but the damage to my nervous system was pretty severe. I can walk with afos on both legs and a cane. I began to have these symptoms a few weeks ago; it is getting worse and I am wondering if this is CIDP or something else? Thanks.November 17, 2010 at 2:14 pm #96479
Hi, Fred. I experienced trembling in my right arm once the disease hit that part of my body. It was quite severe (like Parkinson’s) but episodic–usually came on when I tensed certain muscles in my hand/lower arm. I am not sure if it was caused by the high doses of prednisone I was taking or the disease itself or both. I recently underwent a stem cell transplant and am now just about finished with the prednisone. The trembling is all but gone — due to tapering of pred, healing or both.
SharonNovember 17, 2010 at 3:18 pm #96482
These were symptoms that I had when I was first diagnosed. In fact, the weakness in one leg was accompanied by “foot drop” (maybe that is just a particular kind of weakness) that caused me to walk with a limp.
Over time and with consistent IVIg treatments, these symptoms faded away. It took about three months before I was able to run again.
Other than flare ups, which I am experiencing now, I don’t have trembling or muscle weakness.
Hope this helps.
Brian SullivanNovember 17, 2010 at 5:15 pm #96488
Fred, I couldn’t believe it when I saw your post. I just emailed Dr. Lewis today and ask what to do about these tremors. He said it could be from my Neurontin. And there are things they can give me for it. Dr. Folgers from Mayo Clinic told me it was from the Cellcept I am on and it goes away in most patients when they stop taking the med. I imagine their are a number of meds and other things that can cause it.
At times, my hands shake so bad I can’t keep the food on my fork. I spill my drinks, etc. It is so imbarrising. If u find out anything that helps please email me at [email]email@example.com[/email]November 17, 2010 at 6:22 pm #96492
I was diagnosed with CIDP in April. However, looking back on it, I started to notice trouble with my hands going back at least a couple of years prior to that. I often dropped things and my handwriting got terrible. I also got trembling in my hands which waxed and waned but never went away totally. I am now on IVIG every two weeks, but my hands seem to slowly but surely be getting worse. I actually will get spasms in my hands and throw things unintentionally.:oNovember 17, 2010 at 7:02 pm #96494
Hard to tell if it is CIDP related … the 1st year after I was diagnosed, I had that problem all the time. The pain in my hands was off the charts and I felt like my arms had 50 times the normal amount of gravity pulling them down. I couldn’t grocery shop – even a little – without crying from the effort of pushing the cart. And if I tried to use the electric cart, well, you have to grip the handles to make them go and so was no help to me at all. Then it got better.
This 2nd year, I believe gravity is working as I now have similar condition in my feet/legs – sigh – what’s a girl to do?
Well, I decided to try for the stem cell transplant program at Northwestern. My application’s been reviewed and my consulatation with Dr. Burt is mid-Jan. I really don’t see any other alternative for a reasonably active lifestyle. There have been several members here and on the facebook forum that have received SCT with great success, so woohoo! Hopefully, I will get accepted!November 17, 2010 at 9:42 pm #96496
Good for you. I am sure we all wish you the best.:)November 17, 2010 at 10:23 pm #96498
I’d had what’s called a semi-acute onset as it was weeks after I’d gotten the all-clear for a long bout of pneumonia. It took three weeks to go from asleep toes and fingers to nerve pain. Then in the course of about 4 days it went to agony. While in the waiting room of an ER I went to major loss of what seemed to be muscle function and ‘coordination’. It did take me two hands to use either a fork knife or spoon! Bendy straws were super useful at that point in time! I didn’t like feeling like a dishrag all the time at all. But, I was.
Having been rather physically active before this all, I realized right off that I’d needed Physical therapy. [It could take me 15 minutes to get out of a chair..so Help was needed?] I asked my ‘first’ neuro, who didn’t think I needed any at all. I changed neuros and got PT orders right off the bat.
The PT is usually low key, and if you’ve got a GOOD therapist [not a gung ho! one?-some therapists can be too agressive for US and set us back] you can make a lot of progress in regaining lost muscle tone enough to function…even with the hands. Lots of low impact resistance type exercises and even using ‘chip clips’ to improve finger strength. Then more progressive exercises to get back to ‘not normal’ but adequately functioning.
I still experience that ‘trembling’ now and then? But try to ignore it, work around it and get by. It’s all scary at times? But we can amaze ourselves with our ways to ‘compensate’.
BTW? It took me over a year to get diagnosed and on IVIG. I knew I’d go downhill super fast without it? But on it, at least I have some independences! I could not take prenisones due to other medical issues.
Ask questions away, don’t be shy, people here are kind and want to help you get thru as so many have before! Hope and good things!
DO check out this site for the ‘diagnostics’? URLhttp://neuromuscular.wustl.edu/antibody/pnimdem.htmlURL You’ll find lots of different types of ‘neuropathies’ here. Some are subtle, others clear cut. Check out the home page at the top where there are bits about ‘lab tests’. In concert w/the diagnostics? You should be able to tell if a doc IS doing all the testing they should for your situation. If not? Second opinions are cheap. Again, good luck!November 21, 2010 at 10:26 am #96566
That was an excellent site homeagain—thank you for the info. I think you had given it once previously and i wasnt able to get to it but finally did. I will definitely explore it again when i have more time. It had lots of info on paraneoplastic neuropathy which is what i’ve been dxed with. thank you again : ) LoriNovember 21, 2010 at 9:06 pm #96584
BUT use it only as a measure of what key things your own doc[s] use to evaluate you. And test you as well. Use it as a tool not as rules, please. They are guidlines only, not rules of law by any means. BTW? The #’s of CIDP types has expanded from about 6 when I’d been first diagnosed-6+ yrs ago to about 14 now.
My first neuro did ‘just the very basics’ but, given his training, background and biases…he went no further than PN! Not one whit further!
So I set out to get a second opinion…and got some testing…[but not FAST enough for me?] So I got a third, luckily from the neuro. dept. head at an area teaching university [Thank goodness for ‘cancellations!’] After that? Testing went fast and furiously. Then, a Diagnosis which Neuro #2 concurred with, and I was on my way. During all the testing? It all just felt ‘right’!
Back to FRED? That weakness is part of our symptoms? And another part our disuse+disease…either thru simple weakness and/or fear of doing more. Key to PT is to get your doc to include that ‘home program’ should be established. You’d be surprised at how fast you can progress strengthwise with silly, often boring exercises that you can do at home…pacing yourself in bits and pieces to build up and improve without exhausting yourself. AND don’t forget? Once PT ends? You’ll need some of those exercises and tools to MAINTAIN whatever you’ve gained. It’s harder, but it can be done! I truly hope you get PT and a not just good therapist? But a great one! THEY ARE OUT THERE somewhere.
Good hope and extra strength to both of you!November 22, 2010 at 3:15 pm #96614
I’ve had trembling in my partially numb hands for years now and also weakness. My neurologist called it intention tremor related to the neuropathy, not from any meds. She did not know the pathophysiology of it. (how exactly it is connected or whatever it is called, sorry, had to ask my daughter who is a doc for a term.) It only occurs when I am trying to do something with my hands and changes in intensity on different days.November 22, 2010 at 4:59 pm #96615
I do not have CIDP just good old GBS and I have tremors in my hands most of the time. Left hand more so then the right. I am not taken any medication. Just the way it is for me. My wife hears me coming when I walk with a glass of ice water.December 18, 2010 at 8:25 pm #97125
I got diagnosed with CIDP about 1993 and general fatigue has been an everyday occurrence since. I adjust my day pretty much around the fatigue factor, generally better in the AM, not so good in the PM.
Most people I talk to w/CIDP and GBS have fatigue. I can do one crutch/two crutch at home and power wheelchair when I go out.
After about 5 years, I began IVIG ea 6 weeks and one day my left hand started to tremble when I tried to do some simple tasks like type or carry a cup of coffee across the room- my Dr. said it was an ‘intention tremor’ – but no medically proven reason. My best guess is my ‘nerve juice’ is leaking my muscles and certain actions are affected.
I also have what my Dr. calls ‘fasiculations throughout’ these are the little tremors ~ when I make the “OK” sign, I can see them in the web of skin between my thumb and forefinger. Pressing thumb and forefinger together with light pressure, hardly any, but a medium pressure and they leap around a lot, hard pressure and they stop. I think these little fasiculations are the main cause of my fatigue, because my body is always ‘at work’.
My hand does not tremble unless I intend to do something. My friend who has Parkinson’s and I agreed not to ‘do soup’ at the restaurant. I drink soup out of a cup and only while sitting, when I type I place my left thumb at the base of the keyboard to steady my hand, and bought a coffee cup with a screw-on lid.
In other words, I adapted.
If there is a drug that would help, I’m not aware of it. But I’m sure there is something. I’m always wary of drug side-effects, I won’t take corticosteroids for example. My diet is IVIG and alprazolam (3mg/day). I wish you well and hope you find what you need ~ and share it with the rest of us please.December 19, 2010 at 8:33 pm #97142
Do a ‘web’ up of your medication using “Name Full Prescribing information’ and read all the fine print!
URLhttp://www.pfizer.com/files/products/uspi_xanax.pdfURL Happy reading, but don’t let it get to you!
Many meds such as this lead to calcium and other key supplement depletions…try adding a calcium supplement to your diet? Better yet, ask your docs about this? Bluntly put? Is it the medication or diet? Bet you’ll get a ‘metabolic blood workup’ That should tell you lots. IF you are low in cacium? [Some neuro meds are culprit calcium depleters] Start taking supplements, but read carefully about them… ideally they should be taken with a % of Vitamin D [to help asorbtion] and Magnesium [again for asorbtion, but also for ‘regularity’] The Mag. is essential or you will have some ‘problems’? It can become a REAL problem if you are also taking other pain meds.
Don’t expect being on calcium to ‘cure’ you overnite. Takes about 3-4 months to work things out to a happy balance, and those ‘fasculations’ IF not med caused? Will abate! The calcium-combo has helped me immensely, but not eliminated it totally. Still occasionally do the ‘two-handed’ coffee cup thing! Usually due to other issues tho…
Good luck and keep faith!
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