My husband had severe pain in his left leg. I took him to the E.R., and they told him he has a blood clot. So he's been in the hospital for a few days now, and the hematology specialist said that the clot may have been caused by his meds (topamax).

Has anyone with dysautonomia had this experience?

How is the pain in your daughters legs. I hope better. i am thinking of you both. hang in ...

Hi so far her pain comes and goes but nothing like it was before. We were told it was reactive arthritis due to possible IBD or stomach infection although upper and lower GI tests ruled out all IBD's and her stomach looked normal. Her doctor was surprised it looked as good as it did considering all her symptoms. She's still having severe bouts with her stomach even though she's on medication... nothing seems to work. The doctor said she is now leaning more towards IBS which brings us back to the autonomic issue.

Is this a common symptom for people with Dysautonomia?

They want her on a very strict high fiber/bland diet. What's supposed to help her for her low bp seems to irritate her stomach yet the bland high fiber diet tends to make her feel very week and more episodic. It is a double edged sword.

Just when I think I have a handle on this Autonomic disorder something else gives out in her system. The GI specialist said all the symptoms she has are seen predominantly in 70yr olds. Yet on DYNA there seem to be a lot of children with similar symptoms.

We do have an appointment with a dr. in Boston hopefully this he will be more helpful than the last Dysautonomia specialist if not then we proceed with our Oct. appt. at Mayo.

Grace8la, I hope your husband recovers real soon. I remember how much pain my mom was in when she had a blood clot in her lung which was apparently really close to her heart.

Baxter, thanks for your concern, I hope that things do begine to settle down for her soon. I've never seen her stomach so swollen and bloated.

We did just get in from a trip to Cancun, Mexico for a much needed vacation. We took it nice and slow and had a great time inspight of the stomach and dysautonomia episodes.

Hugs to all

Thank you for your kindness! He is now home, and seems to be doing better. He'll be on blood thinners for six months to a year, but at least the clot was found below his knee, so the outlook is good.

I hope your daughter is doing better too! Has the pain gotten any better for her? I do pray for the best for you!

My husband has been home on disability for six months now, and if you want to talk to him and ask questions, he would be more than happy to share info with you. His name is Andrew and you can call him at (310) 995-7515.

Bless you!

Grace

I have heard of this happening before. What does her Doctor say? I am praying for you both, it has to be hard to watch her hurt so bad.prayers with you. Lynn

While the pain in her legs have ceased she continues to experience dibilitating GI episodes. Heart racing, extreme dizziness, blacked out vision and fainting spells still occur. Going away for college is on hold until spring unless of course things don't improve. Praying we'll get some help soon. Her last doctor felt this was not associated with dys her GI specialist thinks it is. So confusting! We are no longer seeing the dys specialist that we thought would be of help to her for various reasons. This is why I am hoping Boston will be the answer to our prayers. Most doctors we've dealt with said she would outgrow the symptoms in 6 months. It has been extreme for a year but symptoms really began between the ages of 9 and 10.

Thanks for the prayers and kind words.

Glad to hear her legs are better. Sorry though for all the other problems. No doctor can really say how long dysautonomia will last. It is my experiemce that GI problems do go along with dysautonomia. It does for me anyway.
I am praying for you guys.

i too have a lot of stomach problems and i was wondering if any of you have knots that come up on your head and rib cage.

Not so sure if they are knots but she does get red patches that come and go on different parts of her body with severe burning and itching. Quite like a lighted Christmas tree. No known allergies. Never had this prior the onset of dys symptoms a year ago.

one doctor told me it was cysts on my head and other doctors say they dont know whatthe knots on my head are.

do you go by heart rate or blood pressure in determing pots

Hi Ken,

This is from page 91 of the NDRF patient handbook:

If the patient has an excessive, progressively more severe increase in pulse rate during the tilting, then this would be consistent with pots. If the patient has a decrease in the level of consciousness and finally loses consciousness (syncope), then this would be consistent with neurocardiogenic syncope.

You can have pots separate from ncs. You do not have to have low bp to have pots. Many people with pots do not pass out but some have both conditions. Other, like me, fall in the middle. I have a clear case of pots but don't always have the bp drop.

one other thing is why does it take so long to get on the forum at dinet and at ndrf i got on the forum right when i joined.

quote:

Originally posted by princesshalfling:
Bilateral, muscles twitching periodically, extreme pain in joints, she describes it a deep in side the knees. No history of back injury.

There is no visible swelling anymore. Joints are popping as if something is breaking in two. This causes her to scream out in agony leaving her nauseaus. The motion of bending the knees to sit or stand seems to be most painful as well as sensitive to the touch. Sitting or lying with legs outstretched seems to be most comfortable so long as no one touches them as they are painful to the touch. When her muscles twitch it causes more pain in her joints.

We are now being referred to a Rheumatologist by her PCP but I wonder if this could be from all the fainting spells. She often falls knees first. At the onset of the pain, swelling, and inability to stand or walk we were told togo to the ER. ER doctors did nothing, she was admitted 12 hours later though, but no testing was performed. What they did say is that it was all in her head. Suck it up and get back to school. What a joke!!!

Her bp two days ago was recorded at 79/40 she is constantly dizzy and baring weight on her legs is excruciating. I've been wondering whether an orthopedic doctor would be one to see. It's been 11 days since the onset, tylenol does nothing, and the alieve just tears up her stomach, so she refuses to take anything else.

I feel as though most of these doctors assume we are one of those patients who get off on going to the doctor. I assure you we are not, if I didn't believe she was in pain, dizzy, fainting, fatigued, having chest pains, shortness of breath, vision blurring or loss of, other aches and pains I would not be so quick to have her assessed. What is wrong with the medical profession that they can't let go of their ego to say "I don't know what is going on, let me keep looking, or find someone who can help her" ?? Instead we hear that she is making this up. How dare they make assumptions when they don't see her day in and day out.

We do have a Cardiologist, who believes in her and specializes in Dysautonomias especially POTS but he is 4 hours away. Her PCP is here only 5 minutes away, but I don't think he fully understands though he too believes in her. I do know that he has been speaking with her Cardiologist so that is a good sign.

No more ER's for us!!!
Our prayers and thoughts are with you and everyone else who is suffering,

I have never been in a chat room before today; and am not familiar with the manners that would offend anyone, so please forgive me from the start.
I am writing (As a Disabled RN with advanced education). I am writing to encourage you to take your daughter to see the Rheumatologist and don't give up. She could have Fibromyalgia, but that does not produce swelling and cracking. Before I developed this multi-system Autonomic Nervous System Neuropathy, I developed lupus in my late 20's but my blood work did not turn positive until 1993, 5years later. This is comon with lupus.
It was actually an orthopedic Surgeon with whom I worked who said he had been watching me work with numerous inflammed joints.He ordered the proper blood work and Waa Laa I had my answer. I was able to work for many years,using sick time for flares of the lupus. I had relief of my pain with the medications used for lupus. It took a couple of years for lupus to be Diagnosed and I received many of the same looks from Dr's suggesting I was faking my symptoms.I am ever grateful to my Orthopedic MD/friend. My Knees, ankles, elbows and fingers would swell and be extremely painful to move. There are also other Rheumatological disorders that your daughter could have with these symptoms. I strongly suggest that when you see the rheumatologist that you make a list of your daughter's other symptoms for the Rheumatologist to review, so that he/she can make an educated DX. You also may want to ask your family Dr. to run some blood work before you see the Rheumatologist. I am not playing Dr. here as that would cause me to loose my license (which is on hold for now, bec, I haven't worked in 5 yrs.). I am merely suggesting some tests that Rheumatologists ask to have done: ANA, Anti DNA Single Strand, and a ESR (Esr Shows the amount of inflamation) and an LE prep. These tests let the Rheumatologist know if your daughter has an auto immune disease i.e. a rheumatological disease. Having the results of these tests done and faxed or handed to the Rheumatologist will save you a trip to the Rheum. because He/She would order them when they see your daughter and you would have to go back to that office for the results. In order to obtain an accurate result of these tests, try to have them done when your daughter has the swelling and the pain.
Understand here I am not trying to alarm you in thinking your daughter has lupus. I am writing to save you an extra long trip to the Rheumatologist and because I got those same looks from many Dr's.; because people with lupus,and with me so far, with this dysautonomia; we "Look" healthy. As an RN I can tell you also that I have seen MD's and DO's say that someone's symptoms are in their head simply because the Dr. does not know the answer and even more, will never admit not knowing the answer.
Please do not give up on trying to get answers. I know it is hard and can sometimes be depressing that no one believes your symptoms. ER. Dr's are only trained in emergencies. They know very little about Rheumatology or Dysautonomia. I was an ER nurse for 11 yrs before I started our Hospital's Hospice Program. That is why I can say with confidence the knowledgebase of Er DR.s is limited in Re:Rheumatology and Dysautonomias.
P.S. My lupus finally went into remission one year before I started with many body systems failing, and extreme weakness to heat all within 14 mo.. My Neurologist refused to consider that anything was related. It was my Cardiologist who Dx. Multi System Autonomic Nervous System Neuropathy. My neurologist started treating me like my illness was in my head and would not accept my Cardiologist's diagnosis.jpfrank@frontiernet.net My cardiologist, my primary Dr. and my pulmonologist (the nerve to my diaphragm is affected) suggested I go to The Cleveland Clinic in Ohio for a second opinion. The Dx was confirmed there. This does NOT mean that your daughter will walk the same path that I have. Everyone is different,and my situation is rare.
One more thing, ask your family Dr. to review the National Institute of Health(NIH) Web page and read about Dysautonomia. They have the symptoms and treatments in tables making it easier for a busy Dr. to read. I thank God that my primary Dr. Has read that site, especially since I can't get a Neurologist to accept me. My Primary Dr. Thanked me for that info.And he is WONDERFUL!
I will keep you , your daughter and your family in my prayers, because I discovered when my husband was seriously ill(we have no children so I hadn't been through this before) I discovered, that it is easier to be the patient than the caregiver. Caregiver stress is sooo very under rated!
So, take good care of yourself too. Your body is being flooded with the stress hormones and you must eat and sleep well so that you do not get sick.
If you believe in God, I don't know. But when I'm stressed I talk to him and I pray. This is another method of the many relaxation exercizes you could do for yourself. I will pray for all of you.
Run, don't hesitate about taking your daughter to a rheumatologist!
Sincerely,
Pat R.
P.S. Can you help me outwith some symbols at the topof this page? Either tell me what they mean and how to use them, or refer me to a place where I can read about them?
Thank you in advance for your help.

I did not know that my e-m address would be posted for all to see. I'm begging you. Please don't give it out...PLEASE! I don't want to have to chamge my address.
Thank You
Pat R.