Quote:
Originally Posted by mrsD
I am confused and finding it difficult to respond to your posts.
1) You told us about your Pentasa and recreational drug use but not about other things you are taking, including supplements.
If you just started some supplements, after coming here I'd like to know what they are. And what you were taking before. For example, what is in the Adrenal product?
2) Two days is not long enough for an antiviral to work. Starting and stopping this way is self medicating, and not useful.
Acyclovir also works against herpes Simplex. And what dose are you using?
Glenn has a wonderful link in the stickies here. It explains all the various testing needed to diagnose PNs.
http://www.questdiagnostics.com/hcp/...eralNeurop.htm
This protocol was developed by Dr. Latov, who is considered an expert here in US.
You can use it to help your Neuro do your testing.
I would keep a journal, as to what you are eating/consuming daily and doing, and the symptoms you have that day.
After a while you may see a pattern emerge that can help you.
For example, I found potatoes were a culprit in my foot burning that would come and go.
Some people have gluten intolerance, or intolerance of another food group.
Expect to become a detective, and become an active participant in your recovery. |
My apologies, I guess it's my inexperience with these kinds of things that has led to me leaving out possibly important information. The Acyclovir I was taking the 800mg tablets every 4 hours or so. I do get HSV2 lesions on my backside every so often (maybe 2-3 times a year) and I had one in the days before this all started. I took the Acyclovir for a couple of days, until the lesion subsided. I don't generally complete the 5 day course as I've always found, if I start the medication quick enough, then it goes into remission and I can avoid taking too much medication. Then when you mentioned this may be viral, I thought I'd see if I took the anti-viral again for a couple of days if it made a difference. The Neuro at the hospital said, the HSV2 virus is either active and causing lesions on the body, or it is harmlessly sitting dormant in the nerve cells and he didn't expect this was a viral thing. But as I was willing to try anything to see if it made a difference, that is why I took it for another couple of days just this week.
I understand what you mean about self-medicating, I guess I have just been a bit desperate, especially having to wait to see a specialist.
I'm not going to self medicate again, but was wondering if an immuno-suppressant like prednisone is worth asking the Neuro about, in case this is a result of some sort of immune system problem? being that my colitis is auto immune, could there be other auto immune problems going on? I hate taking pednisone for my colitis which I do short courses now and again (10-14 days) to control flares, but if it could help with this burning at all, I would do anything.
The adrenal support caps I have been taking, but not since this started were:
Vitamin B5 (calcium pantothenate) 150mg
Vitamin B6 (pyridoxine hydrochloride) 50mg
Vitamin C (ascorbic acid) 150mg
Copper (copper glutamate) 500mcg
Magnesium (aspartate) 50mg
Potassium (citrate) 50mg
L-Tyrosine 100mg
Zinc 7.5mg
Acanthopanax senticosus (Siberian Ginseng) root ext. 50mg
Centella asiatica (gotu kola) herb 6:1 ext. 50mg
Glycyrrhiza glabra (licorice root) ext. 100mg
Rehmannia glutinose (shu di huang) root 5:1 ext. 100mg
Withania somnifera (Indian ginseng) root 125mg
Ginger Root 50mg
and the Pentasa I have stopped as I said, as my renal function was slightly impaired. I just have to hope and pray a little that my Colitis stays under control without the pentasa for now, until I can speak to my gastro about my renal function and any alternatives to Pentasa in case this is causing the issues. As it can be toxic on the Kidney.
The Neurologist was of the opinion that I do not have PN, as it was not presenting in the typical fashion. All vibration, skin prick, reflex, hot/cold sensation and muscle strength were fine. Which is why I tried to bring attention to the pubmed article on the dorsal ganglia, but it seems that he either didn't want to be shown something "from the internet" or maybe he just doesn't have enough experience with these sorts of Neuronopathies to recognise the symptoms. As even the article said those sorts of SFG's were not well recognised, So I'm guessing, in a country of 4 million down here, it's not often diagnosed. Your advice on this is very much appreciated.