Well, I saw Dr. Khurana yesterday for my second appointment. He gave me another exam and went over my medical records from the past two years. He says that my pupils react slowly to light, that my blood pools in my legs and that my mouth and eyes are dry and he noted that my skin biopsy showed SFN and that my gastric emptying study showed gastroparesis.

He is scheduling me for autonomic testing: Tilt table, blowing into a balloon, QSART and BP/Pulse analysis. This is great news to me as I have not had this type of testing and I have had symptoms for 17 years. I am concerned about going off my medications prior to the testing. particularly the Verapamil.

Interestingly, he told me that he did have a patient that had symptoms of dysautonomia but had a negative skin biopsy. He did proceed with a QSART and that test was positive. Apparently, dysautonomia can be present without having a positive skin biopsy for SFN.

Can someone tell me of their experience with autonomic testing? And, if the tests are positive will this be diagnostic in terms of why I have SFN and AN?

Mere

Hi, I too have had a ton of symptoms (fainting, migraines, bloating, nighttime itching, spaced out feeling, chronic fatigue, mouth sores, blah, blah, blah..) for almost 15 years and the only real test I have had is the TTT, which really wasn't that bad at all. I wish I had more answers for you, but I have a question. I am going to see Dr. Khurana next month (after waiting 5 months). I cannot wait! Can you tell me if you were happy with him? I am hoping and praying that he will find out why I am this way. I have yet to find a doctor that is really knowledgeable about autonomic disorders (other than Peter Rowe at Hopkins - who is AWESOME, but won't take adults) and I am really excited about my appointment. Any advice would be great. You could email me directly if you want. THANK YOU!

Hi Mere

I had the autonomic battery, including the thermoregulatory sweat test (flunked totally) the tilt test (passed out) valsalva (cardiac innervation issues), QSARTS (abnormal) any way, I had this done BEFORE they did the skin biopsy. The found a lot of abnormalities and that prompted them to do the skin biopsy.

Autonomic issues can result from other things than PN, but I think PN is usually the more common cause.

I did not get any answers as to WHY I have PN. I still don't have what I think is a satisfactory reason. The WHY question is a quandry that plagues most of us.

There's also the definitive diagnoses of the cause, that you don't agree with, it is just one factor of the cause, & probably exacerbated the symptoms - but the docs stop looking because they've 'solved' the problem.
I swear I had symptoms waay before I started to drink and was drinking to Rx myself cause the HMO docs hadn't helped.
When I finally was able to get a proper Dx from a good neurologist, that was the pigeonhole that I got stuck in.
'AN' alcoholic neuropathy - go no further, problem solved!

Thanks Bob, I have also found over the years that Docs like to 'pigeonhole' me also. With me it's fibromyalgia. Yes, it is a possibility, but I usually have an increased sed rate and C-reactive protein. From what I know, FMS does not cause inflammation, nor SFN. Oh well, just an easy out for them ... I guess.

Good Lord Cyclelops, you certainly have autonomic dysfunction, no doubts there - yeah, I know, how profound...duh.

It just gives me the willies though to think that they will not have any answers for me... How can I correct the problem if I don't know the reason? You are right in that I am not the only one in this quandary. Maybe there are no answers for me. Seems like someone would know after all this time.

Mere

TinaG, I have seen Dr. Khurana twice. He seems like a good doctor in that he spent lot of time with me going over my history. He also does a lengthy exam. I will not have a true impression of him until he concludes the diagnostic part of my treatment. In other words, will he drop me like a hot potato if the tests do not show what he is looking for, or, will he sincerely try to help me and not get frustrated with me. This is the make or break as far as I am concerned in a doctor/patient relationship.

One thing that I dislike is the appointment scheduling. Both times I have seen him, my appointments were changed - usually on short notice too. Also, bring a book - he tends to run late.

I think you will like him. He is pleasant, seems very knowledgeable and professional.

I also have an appointment at Johns Hopkins (Dr. Sumner) next week. My regular neurologist made the appointment for me because they were originally able to see me sooner than Dr. Khurana. Of course that changed because I saw Dr. Khurana much earlier than my originally scheduled appointment. I think I will keep the appointment though. Can't hurt to have two opinions.

Do you live in the DC area? I am outside of Annapolis.
Also, does autonomic dysfunction result in itching? I have had intense itching requiring Benedryl when I have been in a bad attack - never knew it was a part of the syndrome.

Best of luck to you,

Mere

Mere, thanks for the infor about Dr. Khurana. I have researched the heck out of him and he seems like he knows alot about autonomic disorders, which I am convinced I have. Right after the birth of my 2nd child, almost 11 years ago, the migraines started. (And have never stopped) The itching - yes - it is terrible! That was my 2nd symptom. It only happens at night and I swear I could scratch myself until I bleed. The only relief is an allegra or claritan before bed. It is usually just my feet and lower legs, although sometimes it is other parts. It is like an itch that comes from inside. It is horrible. i have had test after test and a couple of surgeries, but really, everything always comes back normal, except for my TTT, which was borderline for POTS. However, after speaking w/Dr. Rowe at JHU (HE IS AWESOME) , he looked at my results and said coupled with the my symptoms, I am "posty". He specializes in pediatric chronic fatigue, but my doctor recommended that I contact him (my fatigue sucks!!!) and he called me back within a day. I live in Forest Hill, just north of Towson. I hope Dr.Khurana can figure me out. I am 43 and look healthy but I feel like crap. Thanks again - keep me posted!

Mere, I forgot, there are a few good sites for autonomic disorders. Check out DINET. Or just google itching and autonomic disorders and you will be shocked at the number of symptoms. Remember - our autonomic nervous system controls things that we take for granted: blood pressure, temperature, digestion, etc. I think the itching is from blood pooling in the limbs b/c our blood pressure is so whacky that it cannot get out of our extremeties. Do you get migraines? That is probably my worst symptom!

I went thru a very bad bout of itching a while back and took Lyrica for it....yes, PN can cause it, so can meds....but, it is worth looking at liver enzymes and your bilirubin.