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Newbie, Saying Hello, And Questions,...


Jeanie60
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Hi Everyone,

I?m new here, 46 yr old, female and not sure if I have dysautonomia or not. Perhaps you can give me some advice and maybe help me to know better what questions I need to address my doctor with. I see my neurologist tomorrow and my rheumatologist mid October.

A little history, well actually a lot: I was dx with Systemic Lupus in 99 along with severe Raynauds. In 2001 I was dx with a thymoma, a tumor of the chest, that was surgically removed and associated with Myasthenia Gravis. After the surgery I became more ill, I was dx with MG in 2002. Should have been dx in '01, but no one thought to check until ?02. Not something I would have thought of since I never had even heard of it. In 2003 was dx with Fibromyalgia and in ?05 was dx with Autoimmune Hepatitis. Also have osteoarthritis, osteopenia, have had a complete hysterectomy due to my second round of teratomas and then a twisted fallopian tube. I have had my gallbladder and appendix removed and thymus(with the thymoma). I also have Livedo Reticul?(sp?) and at times, very low blood pressure. Have spinal problems as well, and surgery for ruptured disk in '88.

I am on many medications, some of the main ones, Plaquinel(for Lupus), Mestinon (for MG), Tiazac(for Raynauds, but went off for the summer), Cellcept (for MG and AH), Nexium, Provigil(severe fatigue), Oxycontin for pain, Ambien, Flexeril, and Trazodone for sleep, and several more.

I have had problems with severe sweats that just come on without any notice. I don?t believe they are related to my hysterectomy. I never had problems like this at time of hysterectomy. I flush very easily and I can be sitting still and all of a sudden the sweat breaks out of my skin in BULLETS, everywhere. My clothes and hair are soaked. I feel like such a slob even though I shower a couple of times a day. It is so embarrassing when it happens, especially when others are around. I find myself not going places because of it. I feel like my thermostat is broken.

Sometimes I think it is brought on by stress, sometimes physical position, warm or hot food and other things unknown.

I occasionally have problems with bowel control. Not often, I am generally constipated, but even then, out of the blue, some will slip by me and there is no holding it in no matter how hard I try. It is not a full movement, just a very small amount. I sometimes have problems with urination. When I have to go I can?t always get it to come out. Then when I stand up, it decides it wants to come out and I can?t stop it.

I have been having trouble with sharp pain in the tips of my toes and fingers and occasionally get blood like blisters on the tips of them where the pain is. I don't think it is petechia, I have that in other areas and have never had pain associated with it.

I recently had pleural effusions on my lungs and went through antibiotic and an anti-inflammatory regimen. It helped, but chest still feels full and sometimes hurts. I have shortness of breath often and sometimes just feel like I am not getting enough oxygen and that I have to concentrate on my breathing to get a full breath. Sometimes at night I feel like I am suffocating and wake up. It happens many times in the morning with bad dreams. Not sure if I am having apnea episodes. Sometimes I even dream I am suffocating prior to waking up and then have to try to catch my breath. Then I'm scared to go back to sleep.

I suffer from joint and muscle pain all over(neck, shoulders, feet, hands, knees, you name it), severe fatigue, all over weakness, especially neck, arms and legs. Occasional nausea and dizziness. I also have problems with eating a meal. I fill up fast and get stomach aches easily. I do better grazing through the day with a light meal. Savory foods tend to bother me the most, but unfortunately my love for sweets hasn't changed, though I do have to eat that in moderation, as well.

I talked to my rheumatologist, who bumped up my next appt. (mid October) and she wants me to take my temperature while feeling normal and then again while going into severe sweats. Except for while dealing with the pleural effusion, temp was over 101 then, I usually have an extremely low temperature. It will be 95 and 96 degrees, point something. The highest is usually 97 something. I?m not sure what she is looking for. Sometimes when I am in the sweats my temperature will get even lower. A few times it has stayed the same and once I think it went up a smidgen.

Sorry this is so long, and I know I didn?t get to tell you everything, but I think I have bombarded you all with more than enough information already. I know that many of the symptoms can be related to the things that I already have been dx with and I certainly don?t need anything else on my plate, but I just feel like I am going down fast for my age. I used to be a very active fit person, who loved to exercise, dance, cook, and even work. I?m very frustrated and feel like my life has been ripped away from me.

I have been tested for MS. My last MRI of the brain showed possible white matter in a few places( with the term, could be technical), but neuro thought all in all the scan looked pretty good and wasn?t too concerned about what the radiologist possibly was looking at.. At least not at this moment. So just waiting to see if anything else arises. Though he said even MRI?s don?t always show the true picture. I currently see my neuro for the Myasthenia Gravis. MG/MDA is his specialty and there are very few neuro?s who specialize in MG, so haven?t been out to get a second opinion because of that.

Thank you for any insight you may be able to give me as to whether I may have dysautonomia going on as well. Maybe my docs already suspect it but haven?t really emphasized on it with all of the other stuff going on. If there are any self tests that I can do, I would appreciate any info. Sometimes I feel like I am dying a slow death with all of this stuff. I'd appreciate any info you can give me.

Thanks again,

Jean

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Wow. It sounds like you're dealing with a lot. I hope you get some answers that help you.

The only practical suggestion I have is to try a "poor man's tilt table test". There was a post sometime last week, I think, that described how to do it.

I'm pretty new here, too, so others may have more suggestions.

Good luck.

Spike

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i admire you so much. just having POTS, NCS, anemia, and migraines is hard on me. you must be a very strong woman and you are an inspiration to me! i was feeling bad earlier but then i read your story and i don't feel so bad any more. so first of, THANK YOU!!!

i was diagnosed with POTS (dysautonomia) last year. i know that some patients with dysautonomia have problems with the urinary tract and the bowels just as you do. that sounds very familiar for me. i think i have IBS but i just haven't been to the doctor yet to test that.

the sleep problems you have, the breathing, nightmares, etc. i have that as well. do you have insomnia? i have that time to time and then there are the days i can sleep up to 20 hours a day. very strange. right now i am on the insomnia trip though. do you snore? i do. so i am thinking i have sleep apnea. i am going to get tested soon.

do you have tachycardia, pre-fainting spells or actual fainting spells, migraines, chest pains/discomfort, or anything else like that? i faint all the time.

i also have a lot of muscle and joint pain. my joints pop everytime i move. i haven't been to the doctor about that yet either... yeah it is a pattern. i have a hard time making the doctors believe me and my sympoms. they did pay attention to my TMJ though. i also have a lot of knots in my muscles.

sharp pains- i am not familiar with that but i do get numbness, tingling, jerking, twitching and things like that.

self test...

if you could get someone to help you, perhaps you could do a orthostatics test. supine take your hr and bp, then sit up for 2 mins and take it again, stand up for 2 mins and do it again. if your hr jumps up 30bpm or more perhaps you have POTS. that could be with hypotension or hypertension i believe. i get hypotension.

i hope you get the help you need. i would definately also suggest getting the Tilt Table Test (TTT) done. that is what diagnosed me. oh and a stress test. they will probably do more test on you though to rule out other things. it took a year and a half to diagnose me and i was going to neurologist, cardiologist, mental health-- yeah cause they though i was faking it ( i was in USMC at the time), or my regualr doctor appointments atleast once a week.

take care of yourself and i hope you have a "good day"!

dionna B)

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I just wanted to welcome you. I have not been diagnosed yet with POTS, but I do have IBS and Migraines.

I hope you find the answers your searching for.

Take care,

Amber

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Welcome. I am so sorry for all of your health challenges. A positive spirit seems to shine through in your message despite all that you face.

A tilt table test would be used to diagnose POTS. But there are other types of dysautomomia. Have you been evaluated by an electrophysiologist? Often, but not always, they are knowledgable of autonomic dysfunction.

Many of us have both dysautonomia and autoimmune conditions.

Hope you get some answers soon.

Katherine

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Thank you to Everyone for your kind responses. As you all know, whatever our health challenges, they are ours and they can be very difficult to understand and to cope with. None of us asked for these problems and as you all know as well, we deal with them one day at a time. Some times one hour or one minute at a time. B) Some days are just easier than others and other days we don't want to push the covers off of ourselves in the morning.

Thank you for the information that you have given me. I see my neuro today, so I have several questions for him. He's not the best communicator in the world, but I will go with a list. Usually when he sees a piece of paper in my hand he slows down a little bit knowing that I have additional concerns.

Dionna, I too have lots of knots in my muscles. Some things that I have found helpful is warm water pool therapy and theraputic massage. Massage can be expensive. I hope that someday that insurance companies will see the medical benefits from this. This has helped my muscles more than any medication could ever touch. But if you have the means, I recommend it. If not, you may try asking them if they would do a trade. Some spas will trade having someone answer their phones for an afternoon or whatever for trade for their services. I was just told this recently. At least in my area I guess it is rather common.

I don't have fainting spells, well, at least not in a long time. I do have insomnia. My sleep meds help to get me to sleep, but I tend to wake up a few hours later and can't fall back to sleep. As I mentioned in my first post, at times I feel like I am suffacating. I have a small window in my day, usually between 12 and 3 that I can get something done. Then I'm done. Been having problems with chewing as well. I had problems at first with swallowing and double vision, but this was due to my MG and it is better now with treatment. The Mestinon and Cellcept have helped that. I still get it occasionally, but has greatly improved. My husband says that I snore. I never used to, but I know it has become more of a problem in the last few years.

I have never been evaluated by an electrophysiologist. I have never heard of them, actually. I will have to check with my university hospital and see if there is someone I could see.

Thank you again for all of your help. I'm sorry to know that you all are going through such a hard time yourselves. I guess that is how we find our strenghth sometimes, to know that we are not alone.

Hope to get to know you all better in the future.

Hugs, Jean

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Welcome! I am glad you found us! I hope you are able to find some answers. I wish you the best along you journy of trying to find out whats going on.

Again Welcome! :lol:

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