Gerson's Therapy

[Al]

I have been having increased neuropathy symptoms lately. Woke up from a nap feeling big toe was on fire. Then I got cramps in calves and couldn't walk for a few minutes. Don't know if they are related. I have also had periods of extreme itching where I have scratched legs while sleeping till they bleed. Oh the joys of dealing with GPA and related symptoms.

Oh, yeah--I forgot about the itching and the cramps. (I forget about a lot these days). I think i've commented on the cramps before (can't remember for sure), but the itching...yeah. I would wake up in the morning which spotted sheets. Hate it when that happens.

Al

[drz]

Oh, yeah--I forgot about the itching and the cramps. (I forget about a lot these days). I think i've commented on the cramps before (can't remember for sure), but the itching...yeah. I would wake up in the morning which spotted sheets. Hate it when that happens.

Al

Don't know why or how it helps, but I seem to feel better knowing others have similar issues so I can feel comfortable about blaming some of these things on the @#$%^& darn GPA.

The problems from poor concentration (getting easily distracted and forgetting things) creates problems when I forget things I have scheduled or planned so I try to write lots of notes and post notes to remind myself of things. Putting a daily schedule for everything, medical records etc on an Ipod also helps along with notes on calendars. Some times i can hear the alarms but usually not. So far I have made all my medical appointments.

[Al]

Don't know why or how it helps, but I seem to feel better knowing others have similar issues so I can feel comfortable about blaming some of these things on the @#$%^& darn GPA....Some times i can hear the alarms but usually not. So far I have made all my medical appointments.

Oh, I hear the alarms--my wife sets them for some unholy hour, 8:30 or something--but I don't usually acknowledge the presence of same. I, too, have kept all my appointments, medical and otherwise. though I worry that I will forget a job, which would be bad, considering how much this disease costs. I have several times forgotten to bill a client until the check won't clear before the first of the month--also a problem. But we all have our issues, yes...?

Al

[Sangye]

I have been having increased neuropathy symptoms lately. Woke up from a nap feeling big toe was on fire. Then I got cramps in calves and couldn't walk for a few minutes. Don't know if they are related. I have also had periods of extreme itching where I have scratched legs while sleeping till they bleed. Oh the joys of dealing with GPA and related symptoms.

Other than the cramps, those are symptoms of active Wegs for me. I don't have neuropathy, but if it's increasing I would also suspect active Wegs.

When's the last time you saw your Wegs doc, drz?

[RudiK]

I'm suffering from peripheral neuropathy in my feet and my right hand, which started a month before I was diagnosed with WG. I have no feelings on the outside of my feet and only partial feelings in my right hand. My feet itch and burn when I walk, especially in the area where the toes "connect"*to the rest of the feet and around the ankles. They also used to itch and burn when I rested, but that has been greatly reduced after I started taking 200mg/daily of Gabapentin. I also suffer from cramps in my legs, usually when I get up after resting on my recliner.

[Thakator]

Drz,

Sangye's suspision that increasing problems with PN implies active Wegs comports with what my neurologist told me last month while hospitalized for a flare. He flat out stated that my worsening PN was most assuredly attributable to the flare and he wanted me to get on Rituxin right away. I've heard of rheumies and pulmonologists recommending RTX, but never before a neurologist.

You might try potassium for the cramps. Ron

[drz]

Other than the cramps, those are symptoms of active Wegs for me. I don't have neuropathy, but if it's increasing I would also suspect active Wegs.

When's the last time you saw your Wegs doc, drz?

I had those neuropathy symptoms years ago during initial onset from years of untreated diabetes so don't know if it is diabetes or from some else. My lab work is monthly and continues to look very good for my history. No other symptoms suggest a real active Wegs. My doctors said I would most likely see increased nasal bleeding which happened on last flare, or return of knee pain, or blood in urine if a real serious flare. I monitor urine weekly for blood with dipstick test plus monthly labs. I see my treating doctor every three months and Dr. Specks, my Wegs consultant, every three months. He is off work now with broken leg so will see them both in March but try to get it back on schedule so I see them at least a month apart. I also see a number of other doctors routinely for follow up care (endocrinologist, dentist, internist, podiatrist, opthalmologist etc) and am seeing or going to see several specialists (nephrology, urology, dermatology, otolaryngology) mostly to assess damage from Wegs and options for some repair work.
Does anyone else get tired from all the medical appointment we need to do just to monitor our health?

[Al]

....Does anyone else get tired from all the medical appointment we need to do just to monitor our health?

You bet. Not to mention getting tired of the copays, the parking fees, running up to the pharmacy to re-stock my stash, etc. That's not to mention the annoying business with the disease itself....

Al

[KathyB]

Ditto, Al & drz! Add in the time spent driving! I now have a GI specialist and ENT to add to my PCP, rheumy, infectious disease, and nephrologist! Haven't ventured into the opthamologist yet or seen the dentist since dx. Coming soon!

KB

[Al]

Ditto, Al & drz! Add in the time spent driving! I now have a GI specialist and ENT to add to my PCP, rheumy, infectious disease, and nephrologist! Haven't ventured into the opthamologist yet or seen the dentist since dx. Coming soon!

Good idea to see the dentist, Kathy. Pred can be hard on teeth and gums. Anyway, you add a good point about the driving. For many, this means a full day getting to and from a single appointment. Then there are those that have to travel, plus get lodging, put up with lousy movies and junk food--all for a 20 minute consultation. Yuck!

Al