hi there and i’m sorry you are goinng through this. i am 36 as well and was told by my nuero that steriods in low doses were fine. i was also told that because of our age we have a better chance of regainging everything.
with that being said…my nuero also explained that to really know what residual effects i would have to wait 1-2 years after i fisrt starting feeling anything.
i am at a year.
i was a little worse off then what it sounds like you got hit with though…i was in a wheelchair and in the hospital for two months.
glad you caught it early.
okay so now for your question. i definately feel a boost of energy and strength about a week after my ivig. i believe that the combination of steriods and ivig is what is working for me.
Thanks for sharing your story, it is always interesting learning about everyones individual encounters with this condition.
I just wanted to pass on a bit of info i have learned over the last 2.5 years since i was diagnoised with CIDP. The main thing is that an increase in your symptoms or a deterioration in you general ability to perform your usual activities of daily living is not a good thing and is something you should inform your doctor of. You say that recently the pain has become terrible and you indicate that the numbness is increasing etc. I am not sure how long you have been on the prednisone but if it hadnt and least stabilised me and halted the symptoms I would be returning to the neuro. My neuro once said to me soon after i was diagnoised and we were on the rollorcoaster ride of finding what treatments worked for me (everyone responds differently) a piece of info i often recall ‘If you have 3 successive days of deterioration in condition, ie increasing weakness, numbness, (that cannot be attributed to a triggering factor – ie doing a marathon, or some activity out of the norm) return to my neuro. Of course as mentioned everyone is different and only you are aware of how rapid you decline/relapse but generally an increase in symptoms means the conditon is not under control. Of course certain treatments take a varied amount of time to reach efficacy but remember the longer the deterioration occurs the more chance you have of permanent axonal damage, and more often than not the deterioration phase is more rapid than the remylination or repair phase.
It sounds like you have lost a lot of function already (i too guage myself against my ability to run or not – although what i sometimes call running and passing motorists think is a drunken stumbler is up for debate!!!) and perhaps the prednisone is not enough or the correct form of treatment for you.
I was initially givien ivig which showed stabilisation for about 2 weeks until i relapsed further then we tried further loading ivig plus oral pred which held for another 2 weeks before a greater relapse so then we up’d the pred, reloaded with ivig and then had weekly maintainence ivig, again this kept things at bay for a few more weeks before even greater relapse to quad status so then we tried a combo therapy of pulse methylpred, weekly ivig, and immunosups. There is also plasmaphereisis which is often considered on a par with IVIG.
I just wanted to let you know there are a number of treatments out there and please be proactive in informing your neuro of your condition. At our age there may be a long road ahead dealing with CIDP so the sooner you get it under control the better
All the best, and aim high, hope you’re out there running again in no time
My situation and the length of time to diagnosis sounds alot like yours; except that the neurologist finally settled for an “idiopathic sensory neuropathy of the dorsal root ganglion”. A couple of years later, he decided it was CIDP. Keep in mind that both of these are just descriptions of symptoms! :rolleyes:
But — Dawn is right. There are only a few therapies that work for these nerve disorders – IVIg is one of them. Steriods is one of them. Since you have pain — various pain medications – you are already familiar with neurontin.
You need to find a Doc who can settle on a course of treatment. You don’t necessarily need the biopsy, it has become increasingly discredited; there is actually quite alot of research on that as well — perhaps someone on this forum has something. The thing is – there just isn’t a real range of things to help. So, getting a definitive diagnosis isn’t necessarily going to make any difference to how you are treated. It may make the difference in insurance of course.
Take care and come back here – there is so much information and support.
probably because it is the easiest option. They talk of polio patients that have these ongoing problems when older and compare them to GBS. I guess the fatigue and muscle tiredness/ shaking, sweats but I havent had the rapid onset and ascending paralysis as last time this is just like chronic fatigue syndrome but not, as it comes and goes without reason i feel. Hope I make myself clear