I Got My Results From Ttt And Neuro Exam In The Mail

[all4family]

Hi,

I got my overview, and information of my TTT in the mail, and was not very happy with what it said. It spoke about my TTT, and said it was positive, but under impression/plan it said some my symptoms could not be explained by autonomic system disorder. In addition there is some functionality on examination. Whatever that means. Then it goes on to say The acetylcholine receptor ganglionic antibodies are hard to ignore, however. With such antibodies, the first task will be to exclude an underlying malignancy. As such, she would need radiographic studies which should include CT scans...etc. etc. etc. Then it goes on to say once malignancy is excluded the possibility of an immune-mediated autonomic disorder will need to be considered. The antibody is quite high as mentioned and cannot be ignored. etc. etc. etc. I thought that they weren't worried about cancer.

Then I read Gait is notable for an astasia-abasia gait pattern. So I looked it up. It has to do with sonomitization disorder which is a phsyciatric disorder where you make yourself sick!!!!! So am I making myself have antibodies too? I don't know if that is what it was noted for, but I won't go down that road again!!!

Just when I thought I was done with this and knew what the problems were. Tooo depressing. Thanks so much for listening.

Suzy

[firewatcher]

Easy sweetie, at least they are still looking.

They did not call you crazy, just that your symptoms did not fit into one box. My docs are still trying to unravel my puzzle as well, and several are arguing with each other on lab findings. I know that last nerve is REALLY raw and that any suggestion of it being "in your head" makes you want to put something blunt into theirs, but hold off! You can't fake anti-bodies! Take a deep breath and realize that they don't understand any more than you do.

You obviously don't fit into a neat little bundle of one disorder, so they have to tease apart the multiple things you are dealing with.

Vent away here, but think and detach before you vent to your doctors! It sounds like they might just be on your side.

[all4family]

Hi Firewatcher, Thank you so much. I am just scared. Scared of the tests, scared of cancer,scared of being crazy! I really wanted it to be done. You are so right I don't fit into a neat little bundle. Thanks for letting me vent here. I promise I won't put anything blunt in anyones head! ahahahaha (how about sharp? just kidding)

Thanks for letting me vent. I do need to. I don't know which to do run screaming in terror, or fight em off. (with a blunt object maybe! ahahaha) I do realize it is the idea of dying from cancer, or living with this pain that is what I am really afraid of or mad at. I just can't yell at those things. Thanks so much.

Suzy

[mjan]

OK ok..relax as they are GIVING you clinical..observed EVIDENCE that something IS Wrong my dear!!! This is when BAD is good !! or Confirmation that you cannot maintain your balance without someone needed to catch you..so you dont fall.. AND.. you have an unusual stance and GAIT..its NOT just a psychiatric kind of walk...that is ONLY one kind of explanation..but NOT in YOUR case its due to a neurologial disturbance..see?

Hang in there.. the TRUTH is now revealing itself!!

Warmly Jan

[juliegee]

Oh Suzy,

How uncaring of your doctors to SEND that to you in the mail. That definately should include an explanation and some hand holding. Don't overly focus on the somatization disorder part- hard to fake weird blood tests, etc. Some arrogant, ego-driven doc is simply covering all of the bases so that he ultimately can't be wrong. Sounds like they just want to rule out the scary stuff. There is a rare ype of cancer that can pose as dysautonomia. By all means, check it all out so that you can rest easy. I'm keeping you in my thoughts and prayers.

Keep us posted!

Julie

[mjan]

OH.. and your labs suggest an autonomic problem for sure.. but they need first to rule OUT a malignancy. I hate when they say that without knowing for sure. It sure is scaring to HEAR. I know. I looked up the DX that my new autonomic neuro wrote on my labs.. and he put on a preliminary or working DX that gets rule OUT (or in). I panicked a little at first until I realized that was so insurance would pay for the need for this particular lab..

Does that help??

Whats GOOD is that they DO RECOGNIZE that you are having OBSERVABLE..documented problems.. you are on your way to a diagnosis for sure!!

Jan

[pat57]

I think you will find that the astasia-abasia can mean the general inability to walk. That was the impression I got. here is the medical definition I got.

astasia-abasia

inability or refusal to stand or walk although the legs are otherwise under control.

[all4family]

Hi guys,

Thank you so much. The test they did was part of a paraneoplastic screen. Paraneoplastic Antibodies are antibodies to cancer cells. That much was easy for me to learn about. I had to look long and hard to find the part where it relates to pots. But it does relate to pots. It just more often relates to cancer. I thought because they hadn't mentioned it it was not a consideration, and I didn't ask. Probably didn't really want to know. Paraneoplastic syndrome (this is just what I have learned, so might not all be right) is like autoimmune dysautonomia in the sense of the symptoms it produces. But the reason for the symptoms is cancer. The antibodies are to cancer. There is a link to pots without cancer. But first cancer has to be ruled out.

Thank you Jan. That does help. It's bad enough to feel this sick without someone thinking I am doing to myself. Like I really want to miss out on any more of my life. When I did a search engine on it I came up with a bunch of stuff for phsyciatry. He didn't say anything on his report about phsyciatry, but it upset me none the less. I have been trying to keep going 5 years with that "gait", and it is very difficult for me to walk, or do anything. Once I tried to run with a kite, and my running was so messed up my legs were wobbling everywhere, and my husband laughed (lovingly) at me. I thought I was going to fall. I have fallen several times, and hurt myself, and it is not phsyciatric. I quit going anywhere because I can't walk well, and my muscles hurt, and my balance is always off to where I feel like I am going to fall. I tried telling Drs. about it before, and was told everything from you can't have that many things wrong with you so why do you keep coming here, to you just are out of shape you need to get more exercise. So I gave up. I gave up on it all. I decided I would rather just stay where I could manage with my symptoms by myself then keep thinking I am somehow attention seeking, or just out of shape. I truly haven't been honest with anyone how sick I have been, because when I was I was treated like a phyciatric patient. I am afraid to say I can't go anywhere because of this illness, or it will be said I have agrophobia. You see where I am coming from?

Julie, Thank you. I wish they would of told me the cancer was a concideration while I was there. Then I could have asked questions instead of having my head spin with all these what-ifs. Do you know what the rare type of cancer that can pose as dysautonomia is? Could it be the paraneoplastic syndrome I was talking about? The blood test I had positive is positive more in cancer, than in pots. But it can be positive in just pots. But it sounds like the level that it is at which was .48, and anything over .02 is positive. So he said it was notably high. I'm rambling in confusion aren't I. Anyways thank you for your support. Your right a little hand holding would have been nice.

hugs and thanks

Suzy

[all4family]

Hi Pat57, Thank you for finding that for me. It is very caring of all of you to help me through this. I wonder what I did before?! Thanks a lot.

Suzy

[flop]

Hi Suzy,

I'm so sorry that you got all that lot in the mail - have you got a follow up appointment with the doctor so that you can discuss things further?

I looked up the gait problem and whilst most of the references are to somatization / psych problems that is not what the term actually means. The direct translation from Latin is an inability to stand upright with a wild wobbling/falling gait. Most people who are suffering psychological problems and have a pseudo-problem with their gait would demonstrate this type of wild imbalance as it is so dramatic. However as you have said you try to avoid people seeing you walk like this - exactly the opposite of what someone who wanted attention would do! I have cut&pasted part of the Wikipedia entry - please note the last paragraph saying that this gait can happen with neurological disorders!

From Wikipedia:

Astasia-abasia refers to the inability to either stand or walk in a normal manner. Patients exhibit an unusual and dramatic gait disturbance, lurching wildly in various directions and falling only when a nearby physician, family member, or soft object will catch them.

Astasia refers to the inability to maintain station (stand upright) unassisted.

Abasia refers to lack of motor coordination in walking. The term literally means that the base of gait (the lateral distance between the two feet) is inconstant or unmeasurable. When seen in conversion disorder, the gait is bizarre and is not suggestive of a specific organic lesion: often the patient sways wildly and nearly falls, recovering at the last moment.

However, an acquired total inability to stand and walk can be seen in true neurological diseases, including stroke, Parkinson disease, damage to the cerebellum, Guillain-Barr? and many others.

Paraneoplastic syndrome - it isn't a type of cancer itself but means a group of symptoms (syndrome) that happens alongside a cancer (para = near) (neoplastic = cancer). I suspect that your doctors don't think that you have cancer (they would more likely have talked about it with you) but they have to rule it out as it could be more serious than "just POTS". Also take hope from them saying "once malignancy is excluded..." that doesn't sound like they are expecting to find cancer does it?

I would make a list of your questions and go talk to the doctor and/or your PCP (if it is a different doc). If you have fallen because of your walking problems tell them about the falls, especially if you hurt yourself (people with psych problems will only fall if someone can catch them so won't injure themselves). Have you ever had to go to the ER after a fall? Have you tried physio for your balance problems? Suggesting ways of trying to get yourself better will show them that you want to walk normally again!

Flop

[firewatcher]

Suzy, the acetylcholine receptor anti-body test is also a test for the auto-immune condition myasthenia gravis-----A TREATABLE CONDITION! It usually effects the eyes, which is why I was tested, but it can effect the limbs and lungs. Cancer is an ugly word to hear, but there are so many treatment options now that it is not the death sentence it used to be. Wait and let them check, keep all your labs! Study, but don't worry...the imagination is a powerful force, it will have you question every little ache and pain, thinking: "could it be XYZ?"

One more little snippet, dysautonomia is one of those things that clouds the whole chicken/egg thing. It can cause screwed up labs that look like conditions, OR it can be CAUSED by conditions that screw up labs!

[all4family]

Hi Flop, no, I don't have a follow up with him right now. I don't know if he is waiting for my upcoming GI tests. Thank you so much. That is very reassuring about the gait. When I do the close your eyes thing to see if you can balance, I know I fall, so as soon as a start to feel myself going I open my eyes and try to regain my balance, because I don't want to hit the floor. I tried 3 times to close my eyes, and finally told the doctor I couldn't do it. My hips always seem to go in a circle like they are trying to balance me. I feel it, but I have a hard time correcting it. I wonder if that is what is meant by only falls nearby a physician. I wouldn't fall near a physician either. I just don't want to fall period. It hurts. Yes that is very reassuring to me that he said once cancer is ruled out. It's almost like he is expecting it not to be. Thank you for pointing that out. I didn't think of it that way. I just heard the cancer word, and set myself to worrying. I don't have a pcp, (gave them up for my health...just kidding)the only doctors I have right now are the ones at Mayo who are trying to diagnose this. But they are real good with answering calls. Maybe I will just call, and ask some questions. Yes I have gone to the ER once for a fall. I twisted my ankle and thought I broke it. I think I was making an exagerated effort not to walk funny, because the last time I did the walk test the doctor said I walk at a romberg...I didn't look that up. So I was nervous about the way I walk. Thanks for looking that up, and the suggestions help. It is so hard to think things through when you are feeling so much emotion about them.

Hi Firewatcher, thanks for that info. I have real bad problems with my eyes. Between dim vision, and blurry vision, and then they turn red all the time, and not just a little red in the whites, fire red everywhere even the skin around them. I agree with you that I need to wait and let them check, but it is just so hard to do. I feel like I have waited 5 years for some answers, and the more they find the more nerve wracking it gets. And you are right with the cancer. If I found out I had it I would most likely want to start improving my overall outcome with nutrition, so that is something I can do now. And I don't even need a diagnoses to do it. That is funny...I never thought of that. the chicken and the egg thing. I can see where there are a lot of conditions that would cause dysautonomia, and that dysautonomia could look like a lot of conditions. I will have to keep that in mind. It will be reassuring.

Thanks for the help thinking all this through,

Suzy

[Maxine]

Suzy,

It looks like you received some wonderful words of wisdom here, and just wanted to add my support.

I feel for you, and understand what you mean by certain doctors sying "there can't be that many things wrong with you".

Sometimes you feel too weak to do anything about it, but on good days you can visualize youself kicking him/her in the head with the hope that you might be able to jump start that brain of theirs.

Medical records can be a wonderful thing, and when I go to a new doctor, I take a stack of records I keep at home. I keep all the pertinent records in a separate file. I don't take everything I have, just the most important records pertaining to my medical conditions. Sometimes it helps, and then sometimes the doctor your seeing is sooooo arrogant that he thinks all the doctors on those records must be nuts also.

I had that happen at the University of Michigan this past summer. He told me my doctors were putting things in my head, and said I can not possibly have cervical/cranial instability. These doctors worked for Johns Hopkins, Chicago Institute of neruosurgery and neuroresearch, NIH, Cincinnati Children's Hospital-----and of course Dr. Grubb. All of the doctors that diagnosed my medical conditions are specialists, and some of the top researchers in EDS in the world. I told the doctor this, and told him he obviously doesn't understand the scope of secondary conditions from EDS, and told him his knowledge on EDS is obviously very limited. OOPs, I guess MY ego must have popped out. Not really, I just won't take that kind of obtuse bahaviour from someone who should know better.

It's very discouraging when doctors don't believe you, and it's a scary thought when going into any emergency setting.

It's shameful our medical society is still so ignorant.

On a more positive note I'm glad the Doctors at mayo seem to be working with you. From what I hear they are very good there, and at least if you are going to have doctors that aren't dismissive----mayo docs would be some of the best---

I've had a few docs accuse me of faking the walking gate test, and I just laugh at it now, because I have all the proof I need to know this stuff isn't in my mind. How can someone have abnormal blood work be in thier mind? This is just like a doctor telling me that my structural problems with my spine are in my mind. How dumb is that?????

After you become more seasoned with the ignorance in the medical community, there are times the only thing you can do is chuckle at thier intense ignorance.

I had a radiologist list cancer as a possibility once, and it's scary. On the abdominal CT report they did in late 2007, they said they couldn't rule out a possible neoplasm in my duodeum/lower small intestine, along with many other differentials.

I have had a large diverticuli there for years, and it got inflammed and thickened the intestinal wall. An upper GI with contrast was done, and I found out that it's the same thing I've had for years-----the diverticulum. We have a family history of cancer, so any mention of this as a possibility is very scary.

Good luck to you, and you will be in my thoughts and prayers that it isn't anything related to cancer. It sounds like they don't think it is, and many times doctors will include this as a differential to cover their behinds.

HUGS,

Maxine :0)

[all4family]

Hi Maxine,

Thank you so much for those encouraging words. And thank you for the humor! I would love to kick start there brains! But they are usually sitting on them when I go in!

Thank you for the advice on medical records. I have narrowed mine down to a stack small enough to carry! I have carried them through the last 6 or seven visits, and the only time I was asked for something in them was the one time I forgot! wouldn't you know it! But that is good advice.

It is so sad that Drs. with such high schooling and training forget common sense. I agree there is too much arogance there. The people going to them are in bad positions, and they should be compassionate. But too often they are not. I remember a doctor who had just got through "convincing" me I probably had colon cancer had a drug salesman come into his office. I was signing out, and the drug salesman said hi Harry( that's not his name. I can't remember it). I was tired and confused, so when he asked me a question I couldn't think of his "doctor" name, and said ok Harry. He puffed up and got really nasty, and said thats Doctor Herman to you! In front of a whole office of people. What kind of arrogance is that?!? You would think, (or even hope)that doctors from Johns Hopkins and such would be so much better. I am sorry you had to go through so many doctors just to try and get answers. But I am so glad that you stood up to them the way you did!!!! You go girl! I'm taking notes. And the funny part is I wouldn't let any doctor treat my children or my mother or my husband that way. (I wouldn't even let the vet treat my dog that way) Why do I let them treat me that way?!? And it isn't making me feel better. It just gives me emotional issues with doctors. Which in turn keeps me from getting what I need. I need to hang out here and I can tell in no time I will be back to my old self, and telling them off in no time. Of course only the really arrogant ones!

Yes I have liked every doctor at Mayo. Except the allergist. Even if they thought I was nuts, they didn't say so. And it was the GI from mayo that did the test on the acytelcholine receptors. She said she always believed me. I think she was very pleased also to have been the one to "figure out" this confusing patient.

I am so sorry you have cancer in your family. I do to. Yes the cancer word is a scary one. I thought I was crazy when I was happy about the diagnoses. I thought why would I be happy about this. But that is why. I thought that meant it wasn't cancer. I am sorry you had to go through that scare of cancer. But am very glad it was not.

I'm so glad you just laugh at the doctors about the gait test. I can't believe they came right out and accused you of faking! I was upset that a doctor had said I walk at a romberg. It makes me feel like something is wrong with my brain. I don't want anything to be wrong. But that doesn't make me feel better. And how do you fake a structural problem?!? You are so right.

Thank you for your thoughts and prayers. I have been reading about your struggles, and am praying for you too. You got quit a full plate, and are so courageous in handling it. Take care, and thank you.

Thanks so much for the reply, and I hope things are going good for you.

Hugs Suzy

[Maxine]

Your welcome!

Suzy, I always take extra copies the doctor can keep, then hopefully they will review them on their own. My new PCP scanned them over before he came into the office. The first thing he said was to be very careful with the colonoscopy coming up--------he was worried about them moving me around on the table to get the different views they need of the colon. Well, now it's been cancelled for now due to this virus I have from you know where. I've been sick all week---and soooo weak. I felt bad about having to cancel, but the doc felt bad for me. She is one of the nicest doctors I've ever met----she talks to you like a friend.

I also GET IT about how do we let doctors treat Us this way, but wouldn't let them treat our loved ones this way----or our pets?

I know why--------Because were so stunned with their stupidity! It leaves us speechless....

When we're there with someone else we don't feel all the pressure and anxiety of being screwed around once again.

We're on the outside looking in this time.

Take care of yourself---

Maxine :0)

[all4family]

Hi Maxine,

I am so sorry for the virus you've had. And I am sorry you missed your date for your colonoscopy. I have a EGD no sedation scheduled for 2-17. I'd like to miss it! But know I need it done. I hope you get feeling welll real soon.

And I just gotta ask you where did you get your smiley guy????? Its funny!

Take care, and get better soon.

Suzy

[Maxine]

Hi Suzy,

I can't remember where I got the smily guy, but you can right click on it and select "save picture as" and save it.

I just downloaded it into photobucket, and can use it in any forum. You could always try this with some of these mean and dismissive docs---- ----maybe pound some sense into their head---LOL. Ahhhhh, just kidding.

Take Care of your self, and good luck with the EGD.

Maxine :0)

[all4family]

Thanks Maxine, I always wondered how to do that. And thanks for the laugh. I really needed that. How are you feeling? I hope that virus took a hike. Take care.

Hugs

Suzy