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Does Anyone Shake And Suffer From Tremors That Interfere With Your Ability To Walk?


looneymom
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I am new to your forum but have lots of questions to ask. I have a 12 year old son that was diagnoised with POTS at the Mayo Clinic in December 2011. Since he was diagnoised, lots of other symptoms have started appearing. I have a neurologist and a cardiologist that have helped manage his condition but still have many unanswered questions. Both of these doctors are thinking that my son might need to go to the Cleveland Clinic in Ohio to have a further evaluation. How anyone ever been to this place? My son has started shaking and having termors from waist down. This started about the middle of June this year. He saw his neurologist around the first of August. I was sending her video clips of what was going on at home but actully seeing it happen in her office was priceless. She told me this was a involuntary movement disorder. Does anyone suffer from this? At first I thought the heat set this off, but that does not seem to make a difference. My son gets so shakey, that he cannot walk and has to use the wheelchair. Would love to know about a doctor that is child friendly and could help my son more with his POTS conditions.

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Yes, sometimes I get really bad shakes/tremors and it affects driving (I was driving a stickshift) and walking. Sometimes the tremors are not so obvious but I walk funny, kinda like a limp. Usually during these episodes I have trouble forming thoughts and speaking as well. (I call it feeling like having parkinsons with alzheimers) Clozenapam (Klonopin) helps me immensely with tremors. But having the tremors from the waste down only I have not experianced, it is usually my whole body or just my hands. It was explained to me that the cause is adrenal dumps.

I'm sorry I can't help you out with the doc info....I live in AZ

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Thanks Angela. I really don't understand the adrenal stuff yet. My son does take clozenpam at night to help him sleep. I will ask his neurologist to see about increasing his dosage. Maybe it would help him. He is just 12, so at least I don't have to worry about teaching him how to drive yet.

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Wow - how curious! I'm not a neurology expert but, it sounds like he needs a lot more work-up - this does not seem to be a typical presentation of POTS - dysautonomia can cause a plethora of symptoms however, these type of tremors are suggestive of other neurological issues - it might be that the POTS is really a symptom of another disease process that is going on -

Be persistant - keep digging - it may take many referrals and time to track it all down and put the pieces of the puzzle together - sending blessings, grace, and mercy your way....

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Thanks Soskis. My husband and I get the same feeling and so does the cardiologist and neurologist. Our son has also been diagnosised with vocal cord difunction and vocal tic before he was diagnosised with POTS. However he does have many symptoms of POTS and has failed 2 tilt table test. Our doctors are trying to figure out where to send him next. If you would like to read more about our medical journey, I started a blog survivingpots.com. I have many friends, family, church members, and former students that want to know how things are going. I had to quit my teaching job since my son's symptoms got much worse this last summer.

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You cant go wrong at cleveland clinic or vanderbilt, if you can afford/insurance etc. For some people it an awfully long way, and theres a waiting list.

Yes, i get shake from my wrists up.

I also get entire body cramps on either side that threaten to almost clamp me down. Its perplexing because im so hydrated. In my tennis days those happened during tournaments when you'd play several matches in a weekend in high heat.

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yes I also get episodes of the shakes or tremors....I actually went through a very severe episode recently after getting a saline infusion of all things! The nurse took a video and it is posted here on the forum under 'Scary Pots Attack' it was really freaky...not sure if it is similar to what your son is experiencing? my auto specialist was not sure what caused it but after being diagnosed with MCAS last week that specialist thought it was a reaction.....

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Yes, it looks like he needs a more in depth work up. Ask your doctors if they can refer you to a neurologist who specializes in autoimmune neuromuscular disease. We had a member on here a while back who expressed similar symptoms and she turned out to have something called stiff persons syndrome. Also neurologists can look at the brain to see if there is something there causing symptoms. Did mayo do and tests or films on his brain? What tests did they actually do on him?

A failed ttt just points to and confirms orthostatic dysfunction, it does not tell you why it is happening. In my experience pots itself is usually a symptom of some other underlying disease. If this was diagnosed by a cardiologist, they usually only treat symptoms and are not in the habit of looking for cause outside of the cardiovascular field.

Your doctors who are showing concern should also be able to get you into a specialist faster. Cleveland does have a neuromuscular center. I'd push to get him in as soon as possible, I'm sure your doctors will help expediate that.

Stay strong for your guy, I know this is rough right now, but you are heading in the right direction and once they know why, treatment can follow, maybe not a cure, but a good treatment plan that will help manage it and improve his quality of life. Prayers and a supportive family and friends also can help.

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i used to get those. everytime my husband would have to wheel me into the er cause i couldnt walk. it happened once when i was driving and it was awful and had to pull over. i have not been dx with mcas, but it is suspected. ever since bein on an h1 and h2 blocker those tremor attacks dont happen nearly as often.also i am trying to figure out my triggers, mostly food cause i control my environment pretty well and dont go out much. so i am on a low histamine diet and in the process of doing gluten fre. but whenever i eat something that i find is a trigger, i get nauseous and my legs start doing the tremor thing. than i usually end up vomitting, but since i figured what these are, i take a benadryl when it happens and it calms it down, only after that food is out of me. funny i thought my pots symptoms were going crazy and getting worse, and really it had to dowith mast cell. if i go off my h1 and h2 blocker i almost immediately start getting the tremors again.

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Lyme keeps coming up, I met a girl in hear when i first got sick we emailed each other because she lives close to me, anyways she was diagnosed with Pots at Cleveland clinic she was sick for 16 months and was not getting better so she went to see a LLMD and she has Lyme put on antibiotics got sicker for a couple weeks (which is a normal reaction to the meds) now is doing so much better. When she was at Cleve Clinic she mentioned to them to check for Lyme they blew her off and said it wasn't Lyme, funny both Docs there told me the same thing.

Anyways I do get shakes and tremors mostly just on the inside not visible.

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I get small tremors (shaking hands arms etc) when I am overly symptomatic. It is usually following a stressful situation. Very different from what you are talking about.

I've been a Pt at Cleveland Clinic and think it would be a fabulous place to go next - I'd suggest scheduling an autonomic and neuromuscular workup. I'd recommend Dr. Jaeger

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I get the waist down tremors as your son does. Early on it was one of my most dominate symptoms. Mine have settled down now and i usually only experience them when i am fatigued or if i get stressed about something.

My pots/dysauto manifested first and mainly in my legs. Un controllable shaking weakness and i drug my right leg terribly.

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