New Symptoms

[Timbo]

During the past month or two I have noticed some action tremors (tremors that occur when making a vountary movement) on many of the fingers on both hands. This is a recognized Shy Drager symptom. The tremors are mild and come and go, but this has reawaked my fears about Shy Drager.

I have never had any major othostatic symptoms such as fainting or near faiting. On occasion, when I stand up I get a bit dizzy but no more than normal before this all started. This happens to everyone once in a while from what I have read, even people without orthostatic hypotension. My pressure is about 105/70 sitting and andwhere from 90/65 to 120/80 standing. My heart rate is about 60 sitting and 95-110 on standing. From what I understand this is the classic POTS hallmark.

According to most web sites, impotence and incontenence are usually the first signs of SDS and I do not have either. Do any of you have action tremors? I have read that tremors and twitching are symptoms of orthostatic hypotension.

I feel good, I get fatigue from time to time which is a POTS symptom and not a SDS symptom. Maybe hypochondria is getting the best of me, but this tremor thing has me worried.

Does anyone have tremors and if so where? I have read articles with POTS patients who do have them, but I can't ask them what kind they have.

[MightyMouse]

Timbo, I used to get tremors before I had my spinal surgeries. However, I almost never have them now.

I do know a number of people who've reported having tremors as an every-day symptom. Hopefully, some of them will answer you here. If not, you may want to cross-post your inquiry on the NDRF board.

Nina

[ethansmom]

I posted a similar inquiry a few months ago, because I also get these tremors from time to time. I had one in my thumb that twitched on and off for months!! I also have tremors in my eyes and lip muscles that come and go- but haven't had any in a while. I think that having POTS has made me somewhat of a hypochondriac too, and I was really worrying over nothing...however, I brought it up wtih my doctor anyways, and he assured me that POTS is all I've got...if it makes you feel better, you might want to do tha same for reassurance. Don't worry yourself too much about it

[bethany08xu]

I feel the same way about being a hypochondriac. I started having some neck spasms when I yawned and right away I was thinking Shy Drager. My mom laughs at me but I totally understand where your coming from. I never thought 1 yr ago that my life would be so changed from this time last year. Ask your Dr I think they should know everything. I hope the tremors go away soon.

Betahny

[Timbo]

This all started for me a year ago as well. December 10th to be precise. I felt lightheaded for a week and then I wound up in the ER feeling like dirt. I was fine until August and then fatigue set in, but exercise has helped manage that. My problem is that I do to much research. I read about SDS and when I get a symptom I start to worry and the hypochondria kicks in and it can literally ruin a few months of my life. I had neck twitches back in March and thought it was SDS because my doctor first told me I had neurologic hypotension so I did a search and found that Neurologic Orthostatic Hypotension is another name for SDS. I nearly lost it then and there. Then I saw a competent doctor who diagnosed POTS (which I already knew I had).

Edited December 25, 2003 by Timbo

[bethany08xu]

I keep thinking the year has got to be better than last year with my POTS setting in . That is what keeps me going and trying to get better. The SDS thing is very scary and my first DR who diagnosed me talked to me about it right away and I don't think that was the thing to do. Like you said every symptom and your thinking SDS. My first Dr told me I had Autonomic nervous system dysfuntion that could lead to complete failure,with out doing the tilt table. My PCP ordered a tilt table with an EPS and I was dx with POTS. These Docs really need to think before scaring someone half to death. POTS has been no cup of tea but I really believe that I'll be back to work very soon and with the help of medication be half normal again. I quit researching all of this for awhile because it was starting to consume me. Hang in there.

Bethany

[Timbo]

I agree, when I went for one of my exams I had a team of doctors and interns around me and he kept saying Shy Drager does this Shy Drager does that. I was in a panic by the time they were done.

[geneva]

I think we all go through periods where we focus a lot (OK maybe too much!) on what ELSE we might have. When I first got sick and just got my diagnosis, the front page of the newspaper was all about mad-cow disease. My family (jokingly) said maybe that is what I had because I had recently been in Europe and the list of symptoms was so much like what I had. I FREAKED!! Even though I haven't eaten red meat in 20 years! Logically I KNEW I didn't have it but I realized that my anxiety button was ON 100% of the time and I couldn't help thinking WHAT IF? Now, when I see the news about mad cow, I tell my husband to MUTE.....too many bad memories.

Tim, I agree that sometimes we just need to take a break from research and I would suggest the news. Hang in there. Isn't it funny that we begin to think, "thank goodness, it is JUST POTS"!

[Timbo]

I thought I had rabies before my dx. I have a cat that bit me by accident a few months prior. She was immunized but I let my mind play some serious games with me. So I know EXACTLY where you are coming from. If I had thought logically I would have realized that

1. She was immunized so there is no way she could get it

2. The bite took place 4 months prior and she would be dead by the time I had symptoms.

3. The bite never broke the skin.

It is scary the way your mind can convince you of something that simply isn't true.

Edited January 4, 2004 by Timbo

[DawnA]

Hi! I have not been here for a long time. I have been to busy researching and worrying about what I might have other than POTS. LOL Then I get totally burnt out and depressed about it. I too have become a hypochondriac. How can we not ! This causes so many scarey symptoms.

I went through the whole shy-drager thing too. I also have CNS problems along with POTS. They kept telling me something else was going on. MSA looked like the answer. I was positive! Even had a neuro mention a multiple system degenerative disease. I am no longer worried about shy drager. I feel for you it is very scarey. I think it is common in the beggining of this illness. You probably don't have shy-drager! At least I hope not.

My hypochondrism has brought me to another illness called mitochondrial myopathy. Along with the dysautonomia , I have CNS and neuromuscular problems. Enough problems to get me disability on the first try. Yet one of my neuro feels I have conversion disorder. Now I am 99% sure my daughter has dysautonomia. She has the classic POTS symptoms. I also have a grandma who died at 47 of pneumonia. They say she was always sick in bed. I have been networking with other mito patients and have been getting an overwheming amount of responses, I am getting freaked out. I have learned a lot. Sometimes I wonder if I should just forget about it and not stir things up. I really worry about my kids. Maybe I am better off not knowing. I need to focus on something else.

It is so nice to hear others stories about what they worried that they had. Oh I used to have MS too. LOL

A fellow hypochondriac,

Dawn

[MomtoGiuliana]

I also have tremors that come and go--and I was also freaked about SDS before I got diagnosed with POTS. The neurologist I saw told me again and again that she did not think I had any kind of degenerative disease like SDS. I know how you feel! I have a particularly bad tremor in my neck, of all places. It started three days after my daughter was born. It comes and goes. I try not to let it worry me.

Some POTS medications--like Prozac--can make mild tremors worse. So keep that in mind too--it could be a medication side-effect.

I think we POTS patients are of course prone to hypochondria. We feel awful a lot and have bizarre symptoms that could fit with a variety of diagnoses. It's probably best to keep the internet research to a minimum for that reason!

Katherine

[Timbo]

This is why I love this board. It helps me to realize that I am not alone with these worries. I had a really rotten nightmare last night that I got diagnosed with SDS and woke up totally freaked out. I need to stop researching SDS on the internet, I could get a degree in it by now.