Hi - confused here in the new year and feel like I am wishing my life away waiting for the next Dr. appt, result and drug to work.

Short and sweet - I have been waiting a month and NOT posting this out on the forum but this last two weeks is killing me. Hoping someone can give me a URL or a few words of wisdom because I am only making all my symptoms worse worrying about all of this.....

I finally got in to see a neurologist who listened to all of my symptoms of the past few months that have been acute and some that have been going on for years. Neurologist is sending me to cardiologist specializing in autonomic nervous system disorders because she thinks I have autonomic dysreflexia and he tests for it.

Symptoms:

- burning and sensitive skin on most of body preventing even lightest of clothing, showering, sunlight, air, breezes, touch of others , cannot tolerate any temperature changes (3 months - severe)
-gastroparesis (2 months severe although diagnosed in 2009 it just popped up again)
-tachycardia (resting heart rate 118 for past 3 months) do not DARE do anything to raise it
-fatigue (3 months severe)
-neuropathy/RSD/CRPS in feet/legs worsening incredibly in 4 month period for no reason. I did just have testing for SFN last week which was indeterminate back in 2009
-continuing hair loss
-excessive thirst (3 months severe)
-chronic headaches/migraines where even skin on head hurts (ongoing)

etc.

1. I have NO SPINAL CORD TRAUMA which I read is what AD stems from. I have a clean MRI from 2009 when we were seeking causes of headaches. No injuries.....
2. Blood work all normal except for low B-1 which I just started taking 100mg of daily.
3. Why can't the neurologist diagnose the AD?
4. Everything I google for Auto. Dysreflx. says it is something you immediately go to the ER for but that is clearly not the case with me. Anyone have any insight into other forms of AD that is not out there for easy finding on the internet? articles or research? Other causes besides spinal cord trauma?

5. I asked the neurologist what is causing all the added leg and feet pain - she said the AD may be causing it..... is this possible? My pain docs for the RSD/CRPS are at a loss and not wanting to treat/change things currently.

In the meantime, I have been through 3 courses of low dose ketamine the past month to try and help my RSD/CRPS and it has not helped any. Is it because the possible AD has my body all out of whack?

Any and all help appreciated. I hope all of you are finding rest and comfort in any way you can! Thank you! - Bulldawg95

Honestly, I'm not sure why they think you have AD when you DON'T have any spinal cord injury (that is most common cause of AD). You obviously have some autonomic dysfunction, but it sounds more like dysautonomia/autonomic neuropathy vs dysreflexia.

Also AD commonly has paroxysomal hypertension...which you don't have (or don't list). So another reason the AD Dx just doesn't fit.

You definitely need a neuro or cardio that specializes in autonomic dysfunction, but I think you'll find that this is autonomic neuropathy/dysautonomia and not AD (which is a good thing). That being said though, autonomic dysfunction of any kind is very frustrating to deal with and can greatly affect your life. I have dealt with it for 19 years. But there are meds that can help with certain aspects of it...but you need proper testing first.

So sorry for your suffering.
Hope you get some relief and answers soon.
baba

Dear Bg,

I agree with Enbloc, your gastroparesis could precipitate this, but you apparently are not in crisis. I have all your symptoms and a few more. No migraine though. My first neurologist was a waste of time..he dismissed my symptoms rather than exaggerated them, as in your case, but unfortunately this disorder necessitates a lot of Dr. shopping and visits. Big drag when you feel disabled and in pain.

All my symptoms are part of autonomic and sensory neuropathy. This was determined by positive small fiber skin biopsies. My symptoms came in a rush last April as I was recovering from serotonin syndrome. No data on this! Best guess though is that meds were neurotoxic to me.

I found a great cardiologist and just was officially diagnosed with orthostatic intolerance and POTS last week....which was reassuring for I could not figure out why I'm so fatigued. I will have a tilt table test soon.

So I suggest you find another neuro and a cardiologist who understands different types of dysautonomia (not easy --try calling first). Dysautonomia International (DINET) has a physician list.....I found my cardiologist on one of their threads. Great site overall for you.

You may have an underlying condition, such as an immune disorder, to be detected or ruled out, so it may be wise, after you get biopsied, to consult with a rheumatologist.

Since April some of my symptoms have definitely improved....Yet my neuropathic pain is worsening. I am very relieved by my diagnoses. Also by having a few great docs (still looking for a good neurologist!).

It's very important to be accurately diagnosed....for appropriate treatment as well as for receiving disability. Trust your instincts and your research.....a good doc will trust you!

Sylvie

Hi Bulldawg,

I am usually on the CRPS forum but come here from time to time.

It is always wise to get a work up to rules things out when answers are not obvious.

Sadly, CRPS can cause general dysautonomia and many GI problems. If you have had the diagnosis for a while it could be possible that you are having other problems from CRPS now. If your PM is not familiar with this possibility that is a bit concerning.

Also, know that small fiber damage is found in a quite a few CRPS patients as well. Dr. Louise Oaklander has done the studies on this.

There is a data heavy article by Dr. Robert Schwartzmann that may be of help to your doctors. It has a section on dysregulation of the autonomic system. Though I recommend it cautiously as I don't want anyone to read it and become convinced these things are inevitable for CRPS patients...

http://rsds.org/wp-content/uploads/2...ns-of-CRPS.pdf

I am sorry the ketamine is not helping. I hope you find relief and answers soon!

Sending hugs and Healing Love,

Well, because I am obsessed, I read the Scwartzmann article and it does trace all your are experiencing to CRPS Bulldawg. Sorry to be judgemental about your neurologist, but I think you should look for a Neuro versed in CRPS...or a pain specialist versed in dysautonomia. I find disturbing it was suggested you have an unrelated debilitating disease.

Why not write a brief email to Swartzmann to see if he knows a good clinician in your area. Littlepaw, how great you are to respond so sympathetic ally with such good information!

I wish you all the best BD!

Thank you for this. My BP seems to be high one week and then normal for three - depends on the pain in my legs versus the other symptoms taking precedence. All so very interesting - at least I am looking at it that way instead of screaming about it for now. : )

Thank you Sylvie for DINET resource and the words of encouragement. Helps to know you are not doing this alone!

Thank you Littlepaw for the article. Very good read. I have read some of your posts on the CRPS threads and they have always been so helpful too. I am just reeling from seeing so many doctors who all seem to push me around to one another to have each other 'not explain' what is going on with me. And most of my good info, best source of questions to take to the doctors and little bit of peace of mind I get is actually from these forums so many thanks to all the time everyone takes to contribute! I'll let everyone know what I eventually find out.