What Other Diseases Have Pots Associated With It?

[looneymom]

Tyler had a doctor's appointment with a new neurologist yesterday. We talked for about two hours and she looked over a bunch of testing and a month by month medical journey since 2010. She does not seem to think that Tyler has PANS/PANDAS or POTS. So I'm feeling very frustrated at the moment. However, she wanted a few days to look over his testing and then promised to call me back by the end of this week. So I am hopeful she will think out of the box and she also said she would consult with other doctors about his symptoms.

Tyler has had so many symptoms in the past, but is seems like every time he gets sick we keep adding to the list. The doctor thinks it is something immune or metabolic related. Last night I googled vocal tic, can't stand, and can't walk. I came up with an article on Friedreichs's Ataxia. After coming off the antibiotics last Monday, Tyler is extremely hypersensitive, his pain levels have went up and he can't hardy stand anything covering his legs ( clothes or blankets). Scalp sensitivity and pain is worse. The doctor did ask about pain medications and I will be sending her a list of them today that have been tried in the past. I am very scared of getting my son on something that he will become dependent upon.

. If you know of any strange illnesses that have been associated with POTS, please pass that information on to me. My cardiologist and I are desperate to find answers for Tyler. The doctor I saw yesterday did actually admit after seeing Tyler trying to stand that this is not a psychological problem. This is the first time that a doctor has ever requested to see Tyler attempt to stand. My son and husband helped with this procedure. She also had Tyler do the other test of lifting arms, touching noise, toughing doctors fingers. He started shaking and trembling while doing this. She checked his fit feet and looked at his legs and noticed soft baby hair on his legs. Tyler is 13. His feet were swollen and turned purple because he had been sitting up for almost 2 hours. So I think the doctor got a pretty good picture of what it looked like and we also had videos of the tremors and vocal tic in the past. Overall I think the appointment went well but just want to know what other strange illnesses that I should be looking at. Sorry this is so long but hoping that someone else can suggest another strange illness or test that might be helpful to run.

Rachel

[Angel1234]

Sorry, Rachel! I have nothing to add as per ideas. I am new to this myself. However your son will be in my prayers and everything that I have read the younger someone is when this hits the better, so there is definitely a reason to be VERY optimistic. I have learned a lot in the few days since I joined the forum. I am sure someone will reach out soon with some ideas for you. Take care.

[davecom]

I'm so frustrated for you, Rachel. Does your son's heart rate still increase the requisite 30 bpm when he stands? If it does, how can she say he doesn't have POTS? Of course he has more than POTS, but it certainly based on everything else seems like part of the picture. Of course it's just a symptom of an underlying disease.

[looneymom]

Tyler has not been able to stand up or walk since he had the Flu in January 2013. The last time Tyler was able to stand or walk was October-December 2012. Before these 3 months, Tyler was bedbound and eventually started sitting up by himself. He could transfer in and out of a wheel chair. He did this all on his own after being bed bound for about 4 months. After he got the flu, he could still sit up and had enough strength or whatever to still be able to transfer in and out of a wheelchair. How does the flu effect a persons ability to lose all their mobility? There has to be an answer for this nightmare.

Rachel

[LMG]

Have you had a diagnosis of Myalgic Encepholmytus (ME) ruled out? It was formerly called CFIDS (chronic fatigue and immune dysfunction syndrome) but that name really trivializes an illness that can be as severe as your son's. Many cases are not severe, as with POTS, but some patients suffer the gamut of symptoms which include:

Cognitive impairment, fatigue, sleep disturbance, orthostatic intolerance, neurologic disturbances etc.

There are several MD's in the country who treat this with IVIG, Ampligen and other medicines. Many MD's dismiss it as with POTS but there are reputable immunologists and researchers who have treatment protocols.

Try googling:

http://www.cfids-cab/org/MESA/ccpccd/pdf

I don't know how to make it a link but hopefully that will take you there.

Hoping for relief for him. PM if you have any further questions.

[LMG]

Sorry for the typo: Myalgic Encephalomyelitus is the correct spelling.

[Katybug]

Hi Rachel,

I'm sorry this is all up in the air all over again. Here's all the things I can think of that are root causes for pots or differential diagnosis for symptoms similar to pots (I'm sure other people will be able to add to this):

EDS

MCAS

Thyroid issues (both hyper or hypo)

Lyme's Disease

Lyme coinfections such as babesia, Bartonella, erlichia (sp?) (There are others but I can't think of them and I lent my Lyme book out to a friend.)

Equine Encephalitis (Eastern, Western, or Venezuelan.... I know this sounds weird but it's a differential dx for Lyme and causes flu like symptoms with neuro damage.)

All autoimmune diseases I've ever read about...lupus, vasculitis, Churg-Strauss, many more I can't remember

Peripheral neuropathy

autonomic neuropathy

Adrenal insufficiency/Addison's

Pheocromocytoma

That's all for now . I'll post again if I think of more.

[Katybug]

Hi Rachel,

I'm sorry this is all up in the air all over again. Here's all the things I can think of that are root causes for pots or differential diagnosis for symptoms similar to pots (I'm sure other people will be able to add to this):

EDS

MCAS

Thyroid issues (both hyper or hypo)

Lyme's Disease

Lyme coinfections such as babesia, Bartonella, erlichia (sp?) (There are others but I can't think of them and I lent my Lyme book out to a friend.)

Equine Encephalitis (Eastern, Western, or Venezuelan.... I know this sounds weird but it's a differential dx for Lyme and causes flu like symptoms with neuro damage.)

All autoimmune diseases I've ever read about...lupus, vasculitis, Churg-Strauss, many more I can't remember

Peripheral neuropathy

autonomic neuropathy

Adrenal insufficiency/Addison's

Pheocromocytoma

That's all for now . I'll post again if I think of more.

[andy271160]

Hi Rachel

I recognise a lot of the symptoms you are describing, I have aframe in my bed to stop the sheets touching my leggs and particularly my feet, my feet and legs go blue/black/purple, I am confined to a wheelchair and am unable to stand at all, I had vocal issues. For over five years my symptoms have progressed and it seemed as if when one faded another two took its place, the neurologists labelled me with functional disorder and was on the point of admitting me in to a 6 month hospital stay to re-programme my brain. I always knew they were wrong and by luck I got in front of a specialist. within an hour of talking and testing he declared a final diagnosis which may be pertinant to your son.

Look up Dysautonomia small fibre axonal periferal neuropathy. Be careful that you identify the specific traits of your sons condition because there are several forms this can develp, Do not scare yourself because some people have confused some symptoms and reached a prognosis that is not warranted, have a look and chat with your people, it is hugely rare with only 1 or 2 people in the UK with it.

Good luck.

Andy

[KareBear]

Rachel, I can imagine your frustration, this has been a rough journey for your family. I pray you get much deserved answers soon. Your son is lucky to have a mom that works so hard to help diagnose him, if anyone will figure this out it will be you! Sending big ((hugs)) to you.

[looneymom]

Just another update. I got an email from our cardiologist and he has ordered the celiac testing for Tyler. Tyler had testing a couple of years ago, but that testing in no longer valid. Celiac can be genetic and cause some of the some of the neurological symptoms Tyler has. After the testing comes back, he wants us to go ahead and start a gluten free diet with Tyler even if the test is negative. Going gluten free should help boost his immune system and maybe help with the headache.

Rachel

[KareBear]

I pray that changing his diet helps significantly! Let us know how he does, I will keep fingers crossed (and toes!).

[davecom]

I don't know if you can afford it or where you live, but have you considered trying to take him to Mayo Clinic or Cleveland Clinic? The doctors in your area have frankly had quite a bit of time to figure out the case, and given the severity of the situation perhaps they are out of their depths? Not trying to be negative, but I just hate to think of your son suffering the way he is when the doctors around him don't seem to have been particularly helpful.

[Natops]

Are you able to travel and see a specialist... (i.e. Mayo, Univ of Rochester NY, Cleveland Clinic)?

[looneymom]

We have been to MAYO and sent videos to them when Tyler started going down the first time. My husband and I reviewed these tapes and the ones we made just recently. The symptoms are similar but are more severe at this time. The neurologist that we are seeing now has all this information and should be calling me today with a plan. I'll post as soon as I know. Hopefully I will not be disappointed.

My husband got to talk to the doctor that is in charge of the PANDAS testing and research. Come to find out, she also researches more that just PANDAS. We also sent her Tyler's medical timeline and past test results. She was very interested and asked about some other symptoms that Tyler was having. She is running some more testing that has to do with the brain. This testing should be done by next week. She will then be able to tell us the results and how to proceed. This doctor has many connections in the medical field and has assured us that we will be able to get help for Tyler's condition. We just have to hang tight for a little while longer.

Rachel

[sue1234]

My first thought was gluten, as I JUST read a story last night about a 5 year old boy who had been diagnosed with Tourettes. He had muscle tics along with verbal tics. I was reading this in the book Grain Brain by Dr. Perlmutter. He tested him for gluten problems, and he said his labs came back for "gluten sensitivity". He did not give the exact test he did for him, but earlier in the book and in another patient story, he said that person had 300x elevated Iga gliadin, and he called that a gluten sensitivity. ( As a side note, I also had around a 225x elevated gliadin level). He said when he took the boy off all gluten, in 2 days the tics stopped.

I am not saying this is your son's exact cause or his only cause, but it is definitely worth a try to get off the gluten. Just don't get off before the testing. Let us know how the diet goes when he begins it!

[Chaos]

We have been to MAYO and sent videos to them when Tyler started going down the first time. My husband and I reviewed these tapes and the ones we made just recently. The symptoms are similar but are more severe at this time. The neurologist that we are seeing now has all this information and should be calling me today with a plan. I'll post as soon as I know. Hopefully I will not be disappointed.

My husband got to talk to the doctor that is in charge of the PANDAS testing and research. Come to find out, she also researches more that just PANDAS. We also sent her Tyler's medical timeline and past test results. She was very interested and asked about some other symptoms that Tyler was having. She is running some more testing that has to do with the brain. This testing should be done by next week. She will then be able to tell us the results and how to proceed. This doctor has many connections in the medical field and has assured us that we will be able to get help for Tyler's condition. We just have to hang tight for a little while longer.

Rachel

Really hoping they come thru with some ideas for you and Tyler. You all have been thru the wringer!!

[Katybug]

Thinking of your family and hoping there are answers in your future.

[looneymom]

I will bump up some old post for you.

Rachel

[looneymom]

Have your doctors checked you for Autoimmune Autonomic Ganglionopathy, Mast Cell Activiation Disease, or Paraneoplastic antibodies?

Rachel