Back again from neurologist
 

I went to a neurologist today that specializes in dysautonomia. He did a very long history and exam. Basically, the exam was normal except he noticed the flushing. Also said my BP and pulse change a bit more than what is determined as "normal" upon sitting and standing and that my extremities get red (my legs up to the thigh and my hands) when standing (is the blood pooling?). Also, I have pain in my upper tummy when he poked around. Well, I do... I have had a lot of surgery. I don't know what it all means...

He said he would decide which direction to take after he looks at my records...

Hope you are all well. I have been lurking...:)


Mere

I can't remember, did you have a tilt table?

I am home brooding over my nameless disease....(I managed to make some soap, and practice training my dogs or myself, whichever....but that is about all I could do, or would do....foo) At least the news has been entertaining and my new kitchen and living room cheerful.

I wish I could tell you that the answers for you would be forthcoming....truth is, sometimes this takes a while....(like a decade for me...my, my how times flies.:p)

Hi Cyclelops, no, I have never had a tilt table test. My dysautonomia seems to come in "attacks". The neurologist seemed more interested in how and what happened when this all started 18 years ago... I used to have very severe dysautonomia attacks - daily. Where was he then? Nobody seemed to believe me - I was told I was suffering from anxiety attacks just like every other 30 year old woman... Now, I am medicated full of Verapamil and other things that usually mask most of the severe stuff (sweating, tachycardia and the like)...

I still have attacks but they occur less frequently and have changed in character to some degree. But the fatigue and light-headedness occurs most of the time. I do not feel to great in an upright position. I suppose it is going to take a lot more time. They are calling tomorrow to set another appointment.

I am so sorry to hear you are sad... me too. Lately, I have been feeling so low - physically and mentally. We can wallow in it together. I really miss being able to work. Heck, I would feel good just being able to do the chores around the house on a consistent basis. I did some yard work last week and had to sit on the couch for three days. Boy, am I paying for it.

Glad to hear your construction is completed. It all helps! And the weather is improving...:wink:

Mere

Mere, it is really hard "not knowing". And, I understand how discouraged you must be today.

I had had the full battery of Autonomic Testing the end of 2008: Tilt Table, Transcranial Doppler, QSART, Heart-rate-response to deep breathing, and Valsalva maneuver. The results were on a scale of 1-10, I scored a 6 for Autonomic Dysfunction. 6 is still in the moderate dysfunction range, 7 is severe.

I really hoped that after 4 years of waiting for an answer to the SFN, that was the answer. I'm sorry to say it was not. It only proved that the autonomic nerves, as well as the small fiber nerves are affected. The one good thing that came out of it was that I finally understood why I was having such a difficult time functioning - both physically and mentally. Sometimes just knowing relieves a lot of anxiety.

Here is a link to the info I downloaded from the American Acadamy of Neurology about their new (Dec 2008) Practice Parameter for Autonomic Testing, as it relates to neuropathy. You might find some useful information there.

http://docs.google.com/fileview?id=0...ZTUzM2Nl&hl=en

cyclelops, I sure appreciate your sense of humor, positive outlook and amazing energy - making soap? - how do you do it? I just spent about a half hour trying to cook for a change, and it near wore me out.

Mere, I love your avatar. I have five (count them, five) cats. They just seem to find me, and I can't turn them away. Would you believe there is actually a board game called "The Crazy Cat Lady Game". My sister got it for my last birthday :rolleyes:.

It's amazing how everything that is wrong with us is 'anxiety' or some other non-specific cr@p. Been there, done that. I can't understand how I can have this ANA and pattern with no ENA showing up....grrrrr.

I also had 'attacks' as you put it. Now it is all the time tho. Mine used to come midafternoon.

Seems to me if you have SFN and autonomic symptoms, they would do the testing and understand it is due to the PN. What the PN is from, well, that is the mystery.

I have a cold today too, which is a rarity for me lately.

Cyclelops, I am sorry you are having the attacks... You must be exhausted. Mine were worse in the morning when something would hit my stomach (immediately like a reflex)... I think I lost 40 pounds in two months. Now, I would be about the right weight if i LOST 40 pounds... All this up and down weight.

I was recently diagnosed with "moderate" SFN a couple months ago through skin biopsy. New doctor didn't say much about it on this first visit. It really does seem like a no-brainier though... Maybe he knows something? You can tell that I have such a high esteem of doctors?!

Maybe your autoimmune disease is still morphing, hence the non-ENA?

Take care of the cold..

Mere

Thank you plgerrard for your thoughtful and insightful post. The article you linked looks educational - I will look through it carefully...

I think that no matter how you have it, this is an extremely frustrating disease. I am sorry to hear that you have it so rough...

My goodness, you are a cat lady! I only have three cats. "The Crazy Cat Lady Game" - that is great. I'll have to look for it!

Mere

I am going to have to accept that it is simply, 'autoimmune disease'. If I were not a stickler, I would say, it was Sjogren's, but my antibodies are negative for that. The docs say that is what it is, but I think it is more of a diagnosis to pacify me, which it doesn't. If they feel it is Sjogren's, then why not Mixed Connective? One tells me this, another that, and really no one knows.

I think they either need to increase the frequency of IVIG, or add something like Cellcept. I am tooooo scared of Rituxan and I read the results are not that great with Rituxan.

I just hope they are not missing the forest for the trees.

I am wondering if they are going to recommend fludrocortisone to increase your BP?

I do hope you get some answers....Limbo stinks, unless it is a dance!

Yes, this is true. I am always in limbo, just wish I could dance...

You know, the more and more I understand about AI disease, I really have to wonder if there are many variants of what we know as Sjogrens or Lupus, MCTD or Scleroderma, (etc.) disease?...

I never seem to fit into a "box", yet I have and have had for many years (18 years), evidence of AI disease, mostly Lupus. Physically, I fit the criteria, serologically, I don't. Fortunately, I have a good Rheumatologist that I have been seeing for a long time, and he understands how I am, and treats me for AI disease. It helps me.

I do think, Cyclelops, that we, and many others will be "labeled" in time - and I also think that the current knowledge and testing is inadequate. AI disease is too complex for what is currently available in detection and testing.

Understand about Rituxan... I have read about it... And, absolutely understand your saying "hope they are not missing the forest for the trees". I do also think about that - very much so with the last visit to the new neurologist...

Mere

Oh, also, thanks Plgerrad....It's good to know that some one appreciates my humor....I figure a few folks don't, lol.