faithinspires

Thanks for your replies! I hope from my health to improve more at some point so I can spend more time posting again. I miss the group! Here's the update.

Surgery is over...thank God! Had severe dehydration...lots of IV fluids.

Required oxygen...as my level fell during the procedure due to my

asthma, sinus, & upper respiratory infection. I failed to fall asleep

during the procedure again just like last time. The procedure of

painful at times, although it was over very quickly. They found no

polyps this time...thank God! I still have the same prior things they

found during my last gastroscopy/colonoscopy. The only new thing they

found was a hemmorrhoid very high in my colon that was the source of

the rectal bleeding I have been having...so not too serious there. They

did 8 biopsies...results in 7-10 days. My BP/HR did well through the

procedure! Yay! I slept for 24 hrs after the procedure. Today, I am

achey & wiped out...but soooo glad it is over!

My son is tolerating & responding to the atenolol so far! Thank God!

His cardiologist called today & scheduled his TTT for May 16th at the

Children's Hospital.

Just dropping in to update & send my regards to everyone!

I am still too ill for much posting since my last post...still waiting

for a neurology appt. (end of June) cardiology appt? Today I will be

having my 2nd gastroscopy & colonoscopy. A bit dehydrated from the prep.

Still relying on Midodrine.

My oldest daughter is still taking florinef & midodrine. She is

recovering from a laparoscopy she had earlier this month. It went well.

She is seeing her cardiologist in June as well.

My youngest 10, my son, had a big crash yesterday...BP fell to 75/36 HR

went up to 147. He started on his new medication shortly after this.

His 2nd dose was this morning so we will see. They put him on the beta

blocker Atenolol. He sees his cardiogist mid-May for a tilt table test

at the children's hospital.

Thats my updates for now! Take Care! You are all in my thoughts!

Thank you all for the replies!

My son is really taking this in stride with a positive attitude!

I am having trouble now getting in to see Dr. Rose Dotson, even though Mayo referred me. The neurologist here is working on it & I am waiting for them to get back to me. Although, from what I have heard, Dr. Dotson sounds like she would be a great Dr. I just hope if they can't get me in with her that they find someone familiar with this condition to treat me!

For those of you who see Dr. Dotson, we must be in close proximity then. Dr. Dotson is about 100 miles from me.

Well Wishes to you all! Renee

Thank you for the encouragement!

I get numbness all the time in my hands, sometimes just my fingers. In my feet & my legs...not always both feet or both legs at the same time. Right now my left pinky & left foot our numb...

Used to deal with endometriosis & pots. I wasn't on Mestinonin though. For pain medications for the endometriosis they tried all pain meds. Darvocet was weak & gave me a horrible stomach ache. Vicoden helped & could be prescribed in weaker or stronger doses...did fine with it as long as I ate before taking it.

Percocet was the strongest of the pain meds...not as rough on my stomach...but a little much to take in other ways. Coedine (sp?) made me sick sick sick & tired.

Hope you feel better & find something to manage the pain better.

Just wanted to let you know that you are not alone. I too have been diagnosed with neuropathy, as part of this condition!

I am going to be brief as I am still waiting for referral to the new Dr. I mentioned in my last post & I am having a major autonomic crash.

My 10 yr old son had his appt. today. His diagnosis was NCS. Unlike, his 18 year old sister an I he leaned more towards bradycardia than tachycardia. They want us to journal symptoms & fluid intake. In the meantime, we need to find a pediatric specialist for this; so he can have further testing & begin medication.

If anyone has suggestions for a doctor for him in WI, please let me know.

My 18 yr old daughter who shares this condition has been scheduled for surgery, a laparoscopy, on March 22

As with her prior surgeries they will be monitoring her more closely and managing her anesthesia & medication differently because of the condition.

Other than that, I have a fever, sinus infection, and a miserable toothache.

Take Care to ALL!

Thank you all for your support!

Dayna, I remember now that you had replied after my last post when I failed the last batch of autonomic function tests. Thank you for the information on Dr. Dotson, it is encouraging! I will send you a PM.

briar rose,

Yes that is the address & phone number I was given...

Has anyone ever been seen by or heard of Rose M Dotson from the

Regional Neurology Center in Milwaukee. She used to work with Dr.

Low at Mayo and he is referring me to her. I know I have heard the

name before from another member, but can't remember who. I also have

found her on the internet in the past, but now I can't. BRAIN FOG!!

I am just wanting details about her and what she all treats etc. If

anyone has seen her, how she was regarding these types of

conditions, etc. You know the fears of getting your hopes up for

each next Dr. and not having things work out, causing you to fear

the appt. with the next.

Sorry, I have been away from the group. As you may remember from my prior posts I failed more testing,

became sicker, my doctors said my illness has gone beyond there level of expertise and my condition is more chronic, severe then previously thought. So the wee bit of energy I have goes to my

responsibilities & children.

Also, some may remember that my daughter, now 18, has this condition. Now my son, 10, is displaying symptoms, seeing his doctor, having testing & has been referred to a cardiologist or for all the usual

tests to determine if he has the condition as well. Once again, as a mother, gone through this before. My heart is breaking for my son. He also has been sick for the past 3 weeks with atypical pneumonia &

asthma...so many meds for that & for migraines. Many dr. visits.

I could say so much more, but will leave it at that, as it is the gist of things.(and this is long enough)Thanks in advance to all who reply.

Prayers & hugs to all! Renee

Hi!

Yes flourescent lights bother me, as does sitting at the computer. I also get dizzy, tired, sore at the computer. Sometimes I am unable to type due to tremors. Renee

Stacey,

Its good to hear that everything came out alright for your father in law! I will continue to keep him in my thoughts and prayers for a speedy and fully recovery!

Sorry to hear your appt. got cancelled. It is so frustrating when they have to cancel.

Take Care, Renee

Suzanne,

I agree with everyone else's suggestions. At time I have been able to use my nordic track elliptical. It is nice because it has the bars you can hold onto or stationery ones you can hold onto. I can also adjust the settings on it according to my ability. The other thing I like about it is that if you hold on to the bar, it monitors your heart rate. I have been too sick to use it lately though. During those times I just take brief walks. I also found the YAZ exercises posted on Dinet to be useful. Renee

Linda,

And heartburn too! You poor thing! I have a ton of gastrointestinal problems. I am on Protonix 40 mg twice a day. Tried all of the other prescription ones, until this one finally worked! Feel better soon! Renee

Linda

Sorry to hear you are going through round two on top of having this condition. My daughter just went through the same thing round two on top of this condition. She was better for a bit. Then she hurt her foot at dance. Then she got a sinus infection! I really hope you are feeling better soon...so you can have some more good days! Take Care! Renee

Vanessa,

I so understand how you feel with the waiting. I too am waiting from the call from Mayo as to when I came come in. Before that it was waiting to see the cardiogist 3 times, waiting to see the neurologist, then waiting for hospital tests, then waiting to see the other neurologist, then waiting to see the cardiologist again...only for them to say that my condition is beyond their level of expertise. That there was a total of 6 months.

I cried after each appt., I cried after each phone call. It is hard to be so sick and have to wait.

And the contradictions between doctors, it leaves one depressed. I have had several good cries.

Then I remind myself that even if I cry til the end of time, I will still have what I have.

On the bright side, you are on your way to further, better diagnosis, and better treatment!

Take Care! Renee

Hi again Jacquie,

It is strange that some doctors willl listen and check these things for you and others find it unnecessary!

I have been known to just say to doctors, I am the patient and I want this done...so do it. My daughter has done the same. The funny thing is whatever we are feeling that makes of feel the need to have it checked usually then shows up. (Sounds grouchy of us, but we call it being pro-active.) Lol Take Care! Renee

Hi Jessica,

I am not sure the reason behind your symptoms either, but I hope that this improves for you!

Listen to your body, slow down if you need to and rest when you can! Take Care! Renee

Sue, Regardless of the reason...I think you should sit, lay, get up whatever way makes you most comfortable and doesn't invoke symptoms. There are certain areas in the house and outside the house that I don't like to sit because the light tends to bother me and trigger symptoms. When I sleep, I find myself to be less symptomatic if I lay on a certain side. The height of furniture makes a difference symptom wise too.

So my rule of thumb is to do what makes me most comfortable and less symptomatic! Take Care! Renee

Kim, Hi! Many strange & alarming symptoms disturb my sleep. I also, frequently nap during the day, even if I slept during the night, because my sleep is so disturbed. It is hard with are many symptoms and lack of awareness of our condition for some doctors to not treat us like hypochondriacs...this is frustrating! It is definately a struggle to not overdo it when you feel the need to be a "good parent". And I know the frustration of not being able to always do those things with your children that you want to when you want. My children have been extremely understanding and supportive, but I know it has been an adjustment for them. Their are, however, many lessons our children come to learn that are positive that they would not have learned, if not for having a sick parent. So I try to give them my best when I am at my best (and yes overdo it...paying a price). I also try to remember that I may not be able to be like I used to be, but can use this as a situation to teach my children many valuable lessons. Remember, you are a good parent regardless. I hope you find some answers to your latest symptoms! Take Care, Renee

Simon, Welcome to the group! I agree with all of the above posts! Keep researching, keep searching for a doctor who understands your condition or who is willing to learn about it! I wish you the best and hope you find better tests and treatment soon! Take Care! Renee

Amy,

Hi! My blood pressure has been as low as 70/38 recently. Each time shortly after I ended up fainting, so I don't know how low it got when I actually fainted. Recently, I can't seem to get above 90/70 even with the midodrine (proamatine). Usually, I have tachycardia normally regardless of my blood pressure...but it is worse with my blood pressure dropping. I also, tend to have irregular heartbeats. Then at times I have these episodes where my blood pressure and heart rate drop or they fluctuate up and down and I shake uncontrollably. (not like a seizure, cuz I remain conscious, but so hard that I can't walk or stand. The tremors seem to worse on the right side of my body.) Oh, how I wish this had rhyme or reason. Somedays I don't know whether I am up or down. I wish I had an answer...but you are not alone! Take Care! Renee

Kristen, I too struggle with this. The real answer is I never feel well. Some days are better than others, some months are better than others. If I say I am feeling sick to some but its a good day, they assume that I am not up for doing anything. If I say I am feeling sick and am doing something, some people think I am exaggerating. Some people tell me I look great on days I am feeling my worst. Sometimes, people tell me I look awful. Some notice when I am symptomatic (like my kids), others don't. Some I find, ask me so much, that I find myself telling them sick, and then they think I complain too much.

It is the trickiness of what they call a hidden illness. My daughter and I both sympathise, because we both run into the same dilemnas.

I tend to respond now with: its not one of my better days, it is one of my better days, thanks for asking, and then tell them other than my health I am doing pretty good.

I look forward to hearing others suggestions!

Take Care! Renee

Hi! I have been following your posts with regard to your schooling...I agree you have amazing determination! I too use salty food and water with salt in it to try to help. Right now nothing seems to be helping...not salt...not water...not caffiene...I joke that what I really have is "The sleeping disease".

I do agree with the others suggestions though, the snack & water trick seem to work for my daughter.

You have my sympathy...hope your tiredness improves. Rest when you can and know that I find your determination to be an inspiration! Renee