[Kiwiboy]

Okay, so my symptoms today got really bad (all over burning, face, scalp, forearms, back of legs etc) and were driving me crazy. I went back to the ER at the hospital and told them how much intense pain I was in, hoping in vain to get some answers or some tests. I was also worried because I have been getting a little faint if I get up to quickly, thinking I might have some autonomic involvement. They checked my blood pressure lying down, then standing up. and they were the same. 110/70. Had an ECG, all perfect they said. BP was 100/60 when I first arrived though which I think is low yes? but they didn't seem concerned. Something that may be unrelated, I have had a little 'electrical sound' in my ear, like a little buzz that happens every once and a while. started last night, might be nothing, but thought I'd mention it in case.

So, if you read my first post, you'll know that this started about three weeks ago for me. It started with pain in my hands, progressing to burning sensations all around my body which continue, accompanied by night time parasthesias in my hands. This time at the ER, they actually got a Neurologist to come and talk to me. He did the usual tests with the reflex hammer, strength testing etc and when I ran a few things by him, he just said, I didn't have the signs of a 'Neuropathy', because it is not fitting the usual stocking/glove presentation. Well, then when I ran the 'ganglionopthy' and small fibre Neuros scenario past him, (that was discussed in my last post with Glenntaj & MrsD) and I didn't really get much of an answer. He kind of said, that a diagnosis of what I seem to be experiencing is one of presentation, or 'if you have burning skin sensations, then you have burning skin sensations. Obviously I found this helpful. Apparently here in New Zealand we don't do the punch test, so the road of investigation is closed there on me. I asked him about anything viral being responsible and he said being that all my blood tests had come back 'normal' and I had no 'breakouts' or bodily lesions then there is probably no active virus and it was unlikely. C reactive Protein not showing any inflammation. (obviously it can't feel how my skin feels!). I shall list some of the ones I think might be important for analysis. I know what will be said about my B12 which is 357 and was 499 on the 20th of July, so yes MrsD, it has dropped. Could a drop like this be causative? or simply, not helpful? Even the Neuro said, "and you're B12 is fine" and he doesn't think the parasthesias are related. I asked the Neuro if he thought we should analyse my CSF and he said that there is little indication for such a 'risky' proceedure. Surely Analysis of CSF with presentations such as mine would be standard?

I still have my booked appointment with a Neurologist in four days time where I will have an hour with him. I only had about 30mins with the Neuro in the ER and when I asked him to read the pubmed article on Non-length-dependent Small fibre ganglionopathy I'd printed off, he kind of smiled and shrugged it off, but he did read it. I kind of get the feeling, down here in the South Pacific, I'm going to be limited in how far I can really get with my diagnosis. Either through our lack of PNeuropathy specialists, or our testing procedures, or desire to find answers are lacking.

I think Glenntaj, you kind of answered my question in my last post, you think this is or could be SFG or just some super fast acting SFN??please forgive my amateur questions. what was your Dx? SFN or SFG or is it uncertain? How can you tell? and does it really matter? Does it settle? I guess I just realy want to know if anyone else has had this body wide burning that moves around, are there any other explanations? or is it just time to start scoffing the Amitriptyline and accept I may never know?!?! I had to wear a suit today for work and it felt awful in the heat, I can't imagine what the middle of summer is going to be like! Dark thoughts entering my head regularly lately trying to accept this may be my fate. I read on here how many of you have suffered so long. I'm just not sure I can do this for another 30 or 40 years !

Thyroid 0.67 mIU/L ( 0.30 - 4.00 )

B12: 357 pmol/L ( 170 - 600 )

Folate: 19.0 nmol/L ( > 10.0 )

CRP: < 1 mg/L ( < 5 )

Magnesium:0.96 mmol/L ( 0.75 - 1.00 )

Neutrophils: 3.77 x10e9/L ( 1.90 - 7.50 )

Lymphocytes: 1.64 x10e9/L ( 1.00 - 4.00 )

Monocytes: 0.31 x10e9/L ( 0.20 - 1.00 )

Eosinophils: 0.20 x10e9/L ( < 0.51 )

Basophils: 0.03 x10e9/L ( < 0.21 )


Any other ones I need to be lookng at? I did ask my doctor to tick all the boxes possible. For heavy metals he just wrote on the form "Heavy metals" and when I got to the lab, they said, which ones? So then they tested for none because it didn't say which. Any comments or advice is much appreciated. This forum gives me some hope I might get answers.

[mrsD]

Your folate is high. This happens when B12 is low. Another more predictive blood test is MMA.Your B12 is very borderline and dropping. The reference range for B12 is outdated from your lab. Oral tablets here do not require a doctor's RX. You can take them yourself. There is a B12 sticky at the top of this page with information about that.

Did you have a Vitamin D test? I don't recall if you stated you did.

There are people who cannot methylate properly. This is a genetic failure and requires active forms of Folic acid called methylfolate and active B12 which is methylcobalamin.
There is a test for this ...the MTHFR test. There are about 25 genetic polymorphisms that result in failure of these two vitamins. A high folate reading either means it is building up in your system (not being used) or you are taking it orally. Since you are on Pentasa which depletes this vitamin, and you tested high for it....are you taking it supplementally?

Many doctors do not consider viral titres...it is because they didn't have that in school. Your onset is pretty sudden, and suggests an activation. You can have pain without lesions.
If you suspect this you can start on l-lysine. This does not need a doctor's order. I don't know the laws in NZ on supplements tho. On importation etc. See if you can find it.
iherb.com does ship to NZ.
http://www.iherb.com/info/shipping/International

If you Google "shingles pain without rash" you'll find many hits.

My husband and I have both had shingles (herpes zoster) at different times and in different areas. Mine were down my right arm. I have had pain from my neck (stiff neck) there down the arm at least 4 times with no rash. Mine was in response to working midnights--and the resulting stress. The vesicles on the first attack were minimal too. My husband had his typically around his trunk, and had pain once after they healed...about 1.5 yrs later in his back where the rash was. His was within a week of a severe bee sting which seemed to trigger it. He also had the shingles in his ear. (this was very unpleasant)

I had the titres drawn by my doctor and the result was very low herpes simplex and very high off the charts herpes zoster. This test was done just after the eruption of the vesicles.

You might have to consult an infectious disease specialist...who can also test you for Epstein Barr virus, which is also thought to activate. There is another virus called HHV6 they can test for too.

If you don't intend to get the B12 MMA test, you can start that now, and see what happens. If you intend to get the MMA test, don't start the B12 supplement until after it, to get an accurate reading. Some places in US only use this test now to screen for low B12 problems. Mostly in the elderly where it can be a hidden problem.

You can also start the L-lysine, as this should not interfere with B12 testing. If you start to get a response of any kind (don't expect a cure), this will point you in the direction of viral serum testing.

[nide44]

For starters, your B12 is waaay too low, and from your post,
seems to be lower than the last time it was tested.
Any B12 below 700 (some say 600) is suspect.

Docs who do not know this,
have been taught from texts 20 yrs out of date!

You may have a B12 malabsorption problem.

Recommended :
Methyl-cobalamin B12 (not cyano-cobalamin)
in amounts of 2000 to 5000mcg per day
for at least 3-5 months, then test again.

My B12 stays in the 1200 range with 1000mcg per day maintenance dosage.

[Kitt]

I had shingles in my head without a rash. This was a number of years ago. It is possible and I have heard of other people saying the same thing.

[Kiwiboy]

Originally Posted by mrsD

Did you have a Vitamin D test? I don't recall if you stated you did.

I didn't have a Vit D test Is that helpful? what will that indicate? In the 4 days before this all started, I had been taking 3mls of cod liver oil in some juice. As I said, only about 4 days worth, so probably inconsequential?

Originally Posted by mrsD

A high folate reading either means it is building up in your system (not being used) or you are taking it orally. Since you are on Pentasa which depletes this vitamin, and you tested high for it....are you taking it supplementally?

I've stopped taking all supplements since this started (I was taking a multi/adrenal support cap). and I stopped my Pentasa because of my slightly impaired kidney function. The only thing I have done is I took Acyclovir for a couple of days to see if I had any change in symptoms. This has not changed anything and my burning sensations persist. They come and go in different parts of my body, in a pretty symmetrical fashion. It seems a shingles outbreak with or without a rash is pretty focal where as my experience is that this is moving around. Face, back of legs, forearms.I've had a look around, and none of the symptoms of 'Shingles without a rash' appear to be like mine.

I starting to think I am stuck with this. As the *only* thing I can find that fits what I am going through specifically is the Ganglionopathy scenario. It certainly seems to be the worst possible option, but nothing else is coming close to fitting the symptoms. I'm not holding out much hope for my Neuro visit. I guess he'll just be saying the same thing, that it's hard to diagnose, lets just start some pain management etc. What a terrible affliction this is

[mrsD]

Originally Posted by Kiwiboy

I didn't have a Vit D test Is that helpful? what will that indicate? In the 4 days before this all started, I had been taking 3mls of cod liver oil in some juice. As I said, only about 4 days worth, so probably inconsequential?



I've stopped taking all supplements since this started (I was taking a multi/adrenal support cap). and I stopped my Pentasa because of my slightly impaired kidney function. The only thing I have done is I took Acyclovir for a couple of days to see if I had any change in symptoms. This has not changed anything and my burning sensations persist. They come and go in different parts of my body, in a pretty symmetrical fashion. It seems a shingles outbreak with or without a rash is pretty focal where as my experience is that this is moving around. Face, back of legs, forearms.I've had a look around, and none of the symptoms of 'Shingles without a rash' appear to be like mine.

I starting to think I am stuck with this. As the *only* thing I can find that fits what I am going through specifically is the Ganglionopathy scenario. It certainly seems to be the worst possible option, but nothing else is coming close to fitting the symptoms. I'm not holding out much hope for my Neuro visit. I guess he'll just be saying the same thing, that it's hard to diagnose, lets just start some pain management etc. What a terrible affliction this is

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.

[glenntaj]

--no diagnosis was ever forthcoming--I am still, after all these years, "idiopathic".

And yes, it's very hard to distinguish between an acute onset body wide small-fiber neuropathy and a similar onset where the attack is on the dorsal root ganglia. Dr. Moghekar, who is the Johns Hopkins researcher who wrote aboutthis and who I've corresponded with, says since the technology does not yet exist to adequately image the dorsal root ganglia, a determinatin on that score awaits my autopsy (which, I gather, is typical neurologist humor).

Moreover, it would be very hard to distinguish this from a sudden attack of Central Pain--the type that occurs when there is sudden damage to the spinothalamic sensory tracts that go from the upper spine to the brain. People who get this report very similar symptoms, and there are many causes, including stroke/transient ischmeic event, multiple sclerosis, meningitis, and, interestingly, subacute cord degneration from B12 deficiency (which does not only affect the peripheral nerve, but can impact every cell i the body).

Take a look at

www.centralpain.org
www.centralpain.com

I do think, given the high folate/low B12, that the testing Mrs. D talks about is worth pursuing.

[Kiwiboy]

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.

[mrsD]

I don't think the virus sitting in nerve roots is harmless.

Look at the horrible pain some people get from shingles that does not go away after the lesions heal.

What changes is that we cannot see the results of the virus infection on the skin. But the virus is with us always.

Herpes virus can enter the brain...causing an encephalopathy.
http://www.patient.co.uk/doctor/Herpes-Encephalitis.htm
This may be more likely for people with poor blood brain barrier function (gluten intolerance, or other autoimmune problems).

So since you know you have herpes, latent or not, I'd start with l-lysine which competes for l-arginine the virus uses to replicate.
The ratio of these two amino acids is thought to control virus activity. You want to avoid l-arginine and have more l-lysine in your system.
http://www.herpes.com/Nutrition.shtml
I used to see the elderly in nursing homes have shingles outbreaks when they were given Arginine supplements for healing bedsores.

You can also try cold packs along your spine. Cold inactivates and sequesters, but does not kill, herpes of either type.
Put the packs on 20 min to a 1/2 hr to the lumbar area for the legs, and the lower neck area for the arms. See what happens.

I've always used cold for my right neck zoster pain. It seems to really help.

[Kiwiboy]

Originally Posted by glenntaj

--no diagnosis was ever forthcoming--I am still, after all these years, "idiopathic".

And yes, it's very hard to distinguish between an acute onset body wide small-fiber neuropathy and a similar onset where the attack is on the dorsal root ganglia. Dr. Moghekar, who is the Johns Hopkins researcher who wrote aboutthis and who I've corresponded with, says since the technology does not yet exist to adequately image the dorsal root ganglia, a determinatin on that score awaits my autopsy (which, I gather, is typical neurologist humor).

Moreover, it would be very hard to distinguish this from a sudden attack of Central Pain--the type that occurs when there is sudden damage to the spinothalamic sensory tracts that go from the upper spine to the brain. People who get this report very similar symptoms, and there are many causes, including stroke/transient ischmeic event, multiple sclerosis, meningitis, and, interestingly, subacute cord degneration from B12 deficiency (which does not only affect the peripheral nerve, but can impact every cell i the body).

Take a look at

www.centralpain.org
www.centralpain.com

I do think, given the high folate/low B12, that the testing Mrs. D talks about is worth pursuing.

Aha, I see. A diagnosis at autopsy isn't going to help with quality of life is it? well, not ours at least Thank you for this information. I shall be addressing my B12/folate issues and following several of MrsD's suggestions. Do you still suffer the burning to this day. Do you notice things that bring it on, reduce it? or is it pretty constant. If I am relaxed and lying down, the pain is almost not there... and I think, hmmm, it's clearing up, it was all just bad dream, but then sure enough, it returns. Such a horrid feeling. Apart from the burning, I have the finger pain. Do you have any other symptoms along with the burning?. Many thanks again.