Need Help From You All

[seaboardbc]

I haven't been on this board in such a long time. You all have helped me over the years and now I am looking for help for my daughter. I was diagnosed with POTS almost 6 years ago at the age of 41. I have/had a ton of symptoms that are managed by meds and by changing my lifestyle.

Anyway, 3 years ago, at the age of 17, my daughter was dx with severe case of mono. Ever since then she hasn't felt good. Her symptoms include headaches, nausea, unexplained rashes, beyond extreme fatigue, overall weakness, her bones ache and enlarged lymph nodes. Two weeks ago they biopsied two different lymph nodes in her neck. The biopsies were benign. The tissue was cultured to look for bacteria and none was found. Meanwhile her lymph nodes are still enlarged. Immediately after surgery she developed what I call "rag doll legs". One minute she can be walking along normally and in a split second her legs get so weak they dangle like a rag doll. Sometimes its worse than others. At its best she can walk but looks severely handicapped, using her arms to keep her balance. At its worse she collapses to the ground. The doctors finally put her in the hospital yesterday for testing to try to figure out what is wrong. With all of the symptoms that I've had, I've never had "rag doll legs". Could this be a symptom of POTS? The infectious disease doctor thinks she has POTS, the neurologist isn't so sure. I'm not looking for medical advice, but rather any information that I can pass on to her doctors. They all have asked me about POTS and my history but I can't give them any clues to tie my daughter's leg problem in with POTS.

Thanks!!!

Bren

[MomtoGiuliana]

I know I have had a very similar symptom when my POTS was bad--I would have episodes where I would practically collapse/legs seemed to give out, although it had nothing to do with changes in blood pressure.

[seaboardbc]

That's exactly what happens to her. Did the doctors give you any reason for what would cause it? How did you get it to stop?

Thanks!

[flop]

A lot of your daughter's symptoms sound like chronic fatigue syndrome which is often triggered by a severe bout of glandular fever / infectious mononeucleosis (mono). It would be good to get her evaluated for POTS as I remember reading a medical paper that did tilt tests on CFS/ME patients and found that a significant proportion of them actually had POTS on TTT.

(My cardiologist suggested that I have CFS as he doesn't believe that POTS causes fatigue (or any other symptoms other than tachycardia and syncope!) - however part of the criteria for being diagnosed with CFS in the UK is that you don't have any other medical problem that could explain the fatigue).

Flop

[seaboardbc]

I think that they will give her a tilt table test. The doctors are just trying to figure out if anything else could be causing it. Tomorrow they are bringing in a cardiologist, rheumatologist and another infectious disease doctor. They want to make sure they aren't missing anything. I am so tachycardic with my POTS and her heart rate is only mildly elevated (~111 BPM compared to mine anywhere from 125 BPM up to 237 BPM but probably averaging around 165 BPM). Does anyone know what would make her legs collapse and if there are any meds that could control it? She can't drive now because of it and she can't walk around alone because you never know when it will happen.

Thanks

Bren

[MomtoGiuliana]

I think it is important that they try to rule out any other causes. When I had this symptom, I had severe POTS and was nearly bedbound/wheelchair bound and had many other symptoms that were preventing me from living a normal life. Even if I had not had this symptom, driving was not possible for me. I was really too weak to do much walking around. For me this particular symptom lasted only several months, although it felt like an eternity.

I hope you daughter gets answers soon and feels much better soon.

[Mary P]

Hi Bren,

I've had what you describe as 'rag doll legs' for over year now. My legs would give out and I would slide to the floor or ground....when I got out of bed, walked too far, stood too long, etc. I've made changes to try to make sure these don't happen again.

I was diagnosed with PAF and I have varicose veins. With both of these conditions, blood pools in my legs and I was told that this causes wobbly legs... like they're made of jello. However, I think that the rag doll legs are due to PAF alone because I had varicose veins at ages 43 and 50 and didn't have rag doll legs during those times.

However, your daughter became unwell at age 17, and for me this was at age 68 so I don't know if this makes any difference in this situation. I was very active before the extreme fatigue and other symptoms dealt me a blow. I consider myself blessed that I wasn't as young as many of this forum's members are.

I'll remember you and your daughter in my prayers.

Mary P

Your daughter is so young

[pat57]

http://www.tchain.com/otoneurology/disorde...ntral/drop.html

have a look - drop attacks

[seaboardbc]

Mary~

What is PAF? I googled it and I can't find it.

I appreciate everyone's input. The doctors and I all agree that before they can assume it's POTS they need to rule other things out, which they are definitely doing. She's lucky on one hand, because she has many doctors working on it. Many of the doctors are my doctors and are familiar with POTS. But none the less, she's barely 20 years old...at least I was married with kids when this happened to me.

Thanks for all of the information. I can't even begin to tell you how much I appreciate it!

Bren

[morgan617]

Do you know what her potassium runs? I mean has she had blood work and if so, what is it. Many potsies have low or low normal potassium levels which can cause severe weakness or even paralysis in muscles.

But it also sounds like it could be chronic fatigue too. There are tests they can do now, like a lumbar puncture to look for proteins in the spinal fluid. (I know, many people think this is a gruesome test, but it's not, I've had it, as have millions with no problems. ) I'm not saying there are never problems, but it is also a good test to look for chronic fatigue now.

I collapse a lot, but mine is related to a potassium problem...but I certainly know that ragdoll feeling in the legs. I'm sorry she's having to go through this. morgan

[persephone]

PAF is pure autonomic failure. Check it out on potsplace.com

[seaboardbc]

I must have been so tired when I asked about PAF . I had been reading about it all day yesterday.

My daughter has had several tests and her legs are getting worse. Here are the results so far:

lumbar puncture: normal

neck MRI: normal

back MRI: normal

sed rate: elevated

WBC: elevated

liver enzymes: elevated

Potassium: normal

ANA: normal

Rheumatoid Factor: slightly elevated

Echo: waiting for results

She's going to have a tilt table test. A lot of other doctors are seeing her today.

Bren

[morgan617]

I haven't got a clue. I might think encephalopathy, but it seems like that would affect her spinal fluid. I am so sorry, having had a chronically ill son for the last 16 years, it breaks my heart that you and she are going through this. I hope you find some answers soon. morgan

[Randi Free]

My 23 year old daughter has the same problem. She'll be walking along and fall. When this happens she can't get up without a lot of help and her legs are very trembly. The first time this happened she became totally unable to walk for 2 days and was hospitalized. All tests except CPK were normal. Her cardiologist thinks her POTS was caused by a virus that she had last December. He thinks it attacked her central nervous system causing the POTS symptoms. He thinks the same virus attacked her peripheral nerves causing a failure of impulse between the nerves and muscles. She is going to have an EMG within the next month. She always walks with a limp.

[Mary P]

Bren,

Sorry to take so long in answering "What is PAF?". However, I see where Persephone wrote of one way of checking. You can also google Pure Autonomic Failure and there are numerous good sites there.

You'll see that PAF is mainly a chronic condition for older people, but like so many autonomic conditions it can occur in people of all ages. Are you keeping a journal of your daughter's BP and HR, first when she's lying down, then when standing? Or, when she's sitting, then standing? This is imp. and was a great help when I first saw a neur.

I also kept track of what was happening in my life from day to day, and especially what I'd been doing just before I'd taken BP and HR readings. It's imp. to record both the BP and HR readings. Everything in the journal was a great help to the neur. Also, I didn't have to remember so much. After his first question, I just handed him a copy of the journal and we were both grateful that I had kept this. I've continued this in preparation for an appt with at an autonomic teasting lab and another neur.

Has your daughter had any seizure-type episodes? I had 2 of these, both where I'd gone for what turned out to be too long a walk. I barely made it home on my wobbly legs. I felt like I was dragging 100 lb weights with each step and collapsed onto the nearest sofa, as stiff as a board, unaware of what was happening around me. After a couple of minutes I fell asleep for about 3 hours and when I awoke I was still shaken and fatigued for the next 2-3 days, but happy to have come through these episodes.

At those times I was unable to record any readings, but a pharmacist friend told me that they were most probably caused when my BP fell excessively low and so blood pooled excessively in my legs. Now I take only 5 min walks.

To a much lesser degree, the same thing happens when I do too much work and without even realizing what is creeping up on me.

Good luck in whatever has to be done to lead to an accurate diagnosis and the resulting treatment(s) which will truly help your daughter. I'll look forward to reading any future posts.

Mary P

[seaboardbc]

My daughter had the EMG and it looks like she has Lambert-Eaton Myasthenic Syndrome. They are just waiting for the results of some blood tests but it sounds like they are pretty sure that's the problem. Now I am trying to figure out if it has any link to POTS. Thanks for all of your posts.

Bren