Thanks again Alison.
The neurologist I am under is actually an Associate Professor at a large local public hospital which I think is a teaching hospital.
With regard to either Tasmania or NSW being close to me, no not really. I’m smack bang in the middle of both, but NSW is an 8 hour drive away and Tassie is an overnight ferry across the bass strait. I tried the Tasmania website yesterday and it appeared to be out of action. Not sure what was happening there. I was aware of both these and I suppose I’m just best to wait for my visit with neurologist on MOnday and see what the next step is.
I can tell you though I am not happy just to keep going on like this and I’m not particularly happy to just keep on increasing the medication, especially since it has made no difference to my pain.
Can you tell me is gabapentin the same drug as neurontin as I have noticed from some of the postings that others are also on this drug. I believe the dose can be increased to as much as 3600mg per day.
Thanks for being so helpful.
Hi alison, nice to talk to you.
My neurologist has just increased me to 600mg 3 times a day. The only thing I have noticed is that it has reduced the prickling sensation I was experiencing all over my body.
I actually sent a fax to my neurologist the other day suggesting CIDP. It will be interesting to see what he says when I see him on Monday.
Having quite a good day today so am very thankful.
Hello out there! This is my first time so please bear with me. As my title states, I am as yet undiagnosed with anything, but came across CIDP in my internet travels and boy it seems to fit everything I have.
It started off last July when I started having sore feet (its hard to describe) but I could not stand still for any length of time, I had seering pains shooting through my calf muscles, muscle weakness, weak wrists, fatigue (I had trouble standing up to make my childrens lunches for the day and had to sit down when trying to dry my hair with the hairdryer the pain from my feet was so extreme), back pain, tingling, pins and needles, pricking sensations all over the body etc. This lasted for 7 weeks. Since then my symptoms have dissipated, although the sore feet and difficulty standing still has remained.
I have seen a general physician – all she wanted to do was put me on anti-depressants. Yes I was easily upset because I was tolerating all this pain and nobody would do anything about it.
Earlier this month, it all started again, the fatigue, muscle weakness and shooting pains in calves, feet always sore – can’t stand still for long and can’t walk long distances, burning feet, joint stiffness, back pain, bands of numbness across buttocks etc.
I’ve tried chinese herbs, accupuncture and reflexology, but nothing seems to eleviate my symptoms.
I have had a MRI of lumbar showing some disc degeneration but nothing to cause my symptoms. I have had an unremarkable EMG (although they only did the nerve part not the needle in the muscles) and the numerous blood tests I have had over the past 12 months have all shown nothing.
In about december last year, I went to my GP saying I wanted to see a Neurologist. Saw him in January and he tried me on Tegretol. This did nothing, so am now on Gabapentin. Have been on this now for 4 weeks with no affect, so he has increased the dose.
I see him again on Monday, but I am extremely frustrated that nothing is working and no-one seems to know what is going on with me.
I’m desperate to find out what is wrong with me, do my symptoms sound like CIDP to all you guys who are obviously experts in the condition.
I hope you have been to the ER or was able to see a neurologist by the time you post again. It is true that it is never too late, but if it is something that is causing nerve damage, the longer you wait, the more damage will be done. It can also be CIDP and not GBS. Most times GBS becomes CIDP, but not all the time. I have CIDP and I think I started out with CIDP from day one. My very early symptoms were numbness, tingling, prickling in toes, then feet which spread up above knees. Hands and arms came next.
Once you know what is wrong, later on, we can help with advice on medications and how to get them free.