Dysautonomia? Desperate To Find An Answer...

[jread]

My wife has unfortunately been a "medical mystery" for the last 6-months, and I have been trying my best to figure out what is going on with her. The story is a long one, but I want to provide all the information that I can:

My wife's past history includes having mono when she was 19, and was later diagnosed with CFS which would flare up from time to time. She also had a thyroidectomy a few years ago and is on hormone replacement pills. She gave birth to our daughter last May and everything went extremely well. In the months after she had lost quite a bit of weight and began feeling tired all the time, as well has having trouble controlling her body temperature (sometimes she felt too hot and would wake up drenched in sweat, and other times she would be so cold that she'd go outside in 105-degree weather in a sweater just to warm up). We attributed all these things to postpartum (losing weight, hormonal imbalances, etc.).

Around early September she started feeling worse and would feel dizzy, like she was going to pass out, especially after going up the stairs to our bedroom. One night she was brushing her teeth and said it felt like "all the blood rushed out of her head" and she thought she was going to faint. She immediately sat down on the bed and we went to sleep. The next morning she felt really hot to me, so I took her temperature for the first time and it was around 103-degrees. We then went to the doctor and he tested her for the flu, strep, etc. and all the results were negative. He decided to send her for an x-ray and noticed a "gray area" in her chest. He then sent her for a CT-scan and there was a mass present in her chest. After that she had a biopsy and we discovered that she had Hodgkin's Lymphoma, a type of cancer in the lymphatic system. This, of course, was terrifying as we had a 4-month-old baby and now we find out she has cancer. The good thing is that Hodgkin's is very treatable and has a high survival rate, so the outlook was good. We were set up with an oncologist who laid out a plan for chemotherapy, got a port-a-cath implanted, and got started on treatment. In the meantime, the fevers would not stop no matter what medication they tried, and were spiking over 104-degrees at times. So, she went in for her first dose of chemo, can home that afternoon and all was well until the next morning when basically all **** broke loose:

The next morning she woke up with a high fever (104.4), and her hands were shaking and hard for her control. It was quite strange. We contacted the oncologist and she said she had "never heard of that" and that we needed to "go to the ER and be evaluated by a neurologist". So we went to the ER and they did an MRI of her brain and spine, both of which came back perfectly normal. They were worried about the fever, though, so they admitted her to the hospital to test her for infections, etc.

This was on a Sunday night, and Monday she was worse. She was having trouble walking to the bathroom and back (her legs were shaking really badly) and eventually they put a catheter in so she could stay in bed. In the meantime they could not find an infection so they assumed the cancer was causing the fever (lymphoma is notorious for this). They gave her every type of drug they could think of: tylenol, indocin, high-doses of steroids, etc. and nothing touched the fever. By Tuesday night she was at a temp of 104.4 so they brought her down to intermediate care. By the time she was there, her temp was up to 105.6. The only thing they could think of was to put her on a cooling blanket to physically cool her like they would with a hyperthermia patient. The cooling blanket worked, but it was quite miserable for her as you can imagine. By this point she was on so many drugs that she was out of it anyway. The next morning things were no better and she went down to ICU where she spent a week. Physical Therapy would come in and try to stand her up, but she was so shaky and her heart rate would jump up to nearly 200bpm when they tried (her resting rate was in the 140s-150s).

Magically, she got better soon after and went back to intermediate care, and then to a room. While she was alert and everything, she still had fever that they could not control without ice packs, etc. and still had high heart rate. She also began to have quickly-worsening neuropathy to the point where she could not walk anymore, and her feet became so painful that she was in tears just from the sheet touching them.

After 5-weeks in the hospital, she went to a rehabilitation hospital where they were going to work on getting her to walk again. She was there for 4-weeks and made great improvement physically, though she still had the fever/heart rate issues the entire time. The doctors kept doing more tests: spinal tap, bone marrow biopsies, CT-scans, etc. and everything was negative. Also, the good news was that the cancer was responding extremely well to chemo and every scan they did showed great improvement. This was especially puzzling the doctors because if the cancer was going away so quickly, the symptoms (fever, etc.) should have completely disappeared by that point.

She was discharged to go home in mid-December and it went well for the first few days. She was still not able to walk or go up the stairs, but she could get around with a walker/wheelchair. We had therapists coming by for home visits as well throughout the week to work on getting her stronger. Then, about a week after she got home, her mom called me and said that the therapist was very worried. My wife's temp was around 104 and her heart rate was almost 160. I called the oncologist who told us to go back to the hospital, and that she would arrange for us to go to MD Anderson (top cancer hospital in the country) to see if they could help. She said she was basically out of ideas and didn't know what else to do (I admire her for still trying her best to help, though).

So, we spent 3-weeks at MD Anderson and saw some truly brilliant doctors who did even more testing. They were also baffled by the fevers and heart rate, saying that they have never seen Hodgkin's act like this, and they have pretty much seen it all. They even did her pathology over again to make sure she was correctly diagnosed in the first place (she was). They had their rheumatologists come in and test her for autoimmune diseases like Lupus, Still's Disease, etc. and found nothing. They also did and EEG/EKG of the heart and found no problems, just sinus tachycardia that seemed to be there for no reason. We spent Christmas and New Years there, which sucked, but at least they were able to rule out a lot more. A neurologist came by and did many tests and said that while many people undergoing chemotherapy end up with some neuropathy, he had never seen it this severe and especially not after the very first dose. His opinion was that she had some sort of "preexisting condition that was aggravated by the cancer and/or chemotherapy" (I think he's right).

By this point she needed more physical therapy, so we went back to Austin and she spent another 4-weeks in the rehabilitation hospital. During this time she did well and her fever spikes stayed under 103 mostly. Her heart beat was also more in the 115-120 range. She ended up finishing chemotherapy there and was discharged in mid-February to come home. I was able to get a lot of time off from work, so I came home with her to help her get around the house, etc. Since then, we have hit many milestones: she made it up the stairs for the first time last week and got to sleep in her own bed for the first time in months, she was done with chemo and started radiation (which is easy compared to chemo), and we found out that she is in remission from the cancer! Yes, the cancer is gone, which was the most wonderful news ever! Also, her nerves seem to be regrowing and she doesn't have pain as often or as severe as before. Her fine motor skills also seem to be coming back finally and her handwriting, etc. is really improving.

Now, the troubling thing for me is that she STILL spikes fevers daily (up to 102-degrees and even 103 once) and while her heart rate is better (95-105bpm), it is still above normal and still gets up to 120 on occasion. We told her radiation oncologist about it and he said that he has no idea what is causing the fever, but it is obviously not cancer related at all at this point.

So, what do we do now? This is obviously something outside of the field of oncology and they have (understandably) thrown their hands up. The rheumatologists found nothing either, and she's seen many infectious disease specialists who said that she does not have an infection of any kind. All MRIs, etc. came back normal. And still, this started with weakness/dizziness, then to high fever, and then after the first dose of chemo severe nerve damage that is still not allowing her to walk, drive or be independent in any way. As for the fever, it is the one that scares me the most. I'm so afraid of it getting too high and me not being able to do anything to help her. As one doctor said, it is like her "thermostat is broken". Her whole face will flush bright red, and sometimes even her arms and chest will have red areas. The strange thing is that where her skin is red it is burning hot, but anything outside of the red area is cool to the touch. The doctors have no idea why that happens. Also, she does not sweat at all when the fever breaks... she just gets hot very quickly (1-2 degrees in literally 20-minutes sometimes), and then it will eventually drop, almost as quickly, but it never goes lower than 99-100 (her temp before all this was typically around 97-degrees).

I'm sorry that this is such a long post, but I didn't want to leave anything out (though I probably did). Does ANY of this sound like dysautonomia at all? I have read that it is possible for dysautonomia to not really show up until something "sets it off", such as cancer and/or drugs like chemotherapy. I can say that all this was A LOT worse when she first was diagnosed with cancer, and it is much better now that she's in remission, but it's not gone. If you do think it could be something somewhere in the spectrum of dysautonomia, what kind of specialist should we see about it? Are there any doctors in Texas (preferably the Austin area) that we could visit?

Thank you so much for your time and for any suggestions you may have.

[Chaos]

Wow! What a nightmare for the two of you, especially with a brand new baby to contend with and then all this on top. You are both to be commended for hanging in there with all this. I'm sure it's been absolutely awful for both of you.

Certainly sounds like there could be some autonomic dysfunction going on with her. Certainly there is a large overlap between CFS and Dysautonomia...( I think I just saw a statistic recently that 90% of people with CFS have Dysautonomia issues.) So if she had that preceding pregnancy, surgery (thyroidectomy), and post-partum she certainly sounds like she may have been pre-disposed to autonomic issues. And certainly pregnancy and surgery can be triggers to set it off. Also a lot of women notice hormonal fluctuations (which post partum certainly qualifies) make their symptoms worse.

Since I'm not a doctor, I certainly can't diagnose her, but I think it would be appropriate to get her in to see a doc that specializes in autonomic issues. Most neurologists DO NOT have a good awareness of the ANS so you should look for a specialist. There are docs listed on the home DINET web page. I know we have a lot of members from Texas that might be able to steer you in a direction. Or, Mayo in Scottsdale AZ has an excellent neurologist who treats autonomic dysfunctions.

Good luck to both of you. Sending you lots of hugs and encouragement!

[Chaos]

OH! (brain fog here...) CONGRATS on her being in remission with the Hodgkins! That's great news. I had a friend who had the same experience...found a lump in her neck when she was pregnant that turned out to be Hodgkins when biopsied. She's doing well at a year out..so hopefully your wife will do the same.

Enjoy that new baby! They grow up WAY too fast.

[jread]

Chaos, thank you very much for your reply and well-wishes

As for our daughter, she had to go live with my parents (5-hours away) during all this since my wife has been in the hospital almost the entire time. They brought her to see us in the hospital as often as they could, but it has been very hard. At this point she has lived with them longer than she has lived with us. We are hoping to bring her back home very soon once my wife's daily radiation treatments are done. We also have to figure out a daycare situation since my wife would not be able to take care of her alone once I have to go back to work.

As for the dysautonomia info, I appreciate it very much. I had no idea of the link between CFS and autonomic issues, and it does seem that postpartum definitely had something to do with it. I also truly think that the chemotherapy is what really sent her over the deep end, as she really went downhill after the first dose.

[Godsgal]

What a wonderful husband you are for researching all this for your wife. I was very sick and bedridden with dysautonomia nearly feeling like I was going to die. I would get temperature fluctuations as well but nothing near what your wife is having. I would get flushing, tachycardia, strange neurological symptoms, the works. When I didn't know what triggered these things, my life was really bad. If she truly has some autonomic dysfunction, then 1) get her to that Mayo clinic autonomic specialist asap-----I went to Mayo in Jacksonville and it was a great experience for me. With a medical condition such as this, it can be so draining seeing a billion doctors all over the place who don't work together and don't know the condition. Seeing some experts all in the same place and knocking it out in a week or so was really helpful for me. 2) research for her and teach her the things that can trigger it. The main home page of this site shows under the pots section things to avoid and what helps. Simple things to try for her are compression hose, avoiding heat...definitely no hot showers or baths, find out what is triggering her flushing. Mine was being triggered by heat, smells, hair sprays/gels for my hair, foods, etc. I avoid those things and it has made my life a lot better.

I'm sure they have done a ton of testing on her but did they test for carcinoid syndrome, pheochromocytoma, mastocytosis....surely they did if you had every infectious disease dr. working on her but it's always good to make sure. You don't mention a tilt table test. Did she get one of those? If you visited the autonomic specialist in Mayo, they could do autonomic testing on her which would include that.

My husband and I have 2 young children. A 3 year old and my youngest was just born last March. It has been quite a struggle for our family, our marriage, but we love each other and do the best we can for our kids. We have held onto our faith in God and stuck it out and tried to stay positive. One day at a time. I want you to know that there is hope and a lot of my doctors have told me that if it is dysautonomia and it comes on suddenly and at a young age, there is a good prognosis. God be with your family!

Take care and keep searching for answers!

[HopeSprings]

I dunno, the fevers are really suspicious to me. I'd go with what the others said and go somewhere like Mayo where they might look at more unusual causes of disease/disorder.

[Noreen]

You have succinctly stated your wife's health issues and you must be an extraordinary individual to go through everything you have. I can/t imagine how heart broken you both must be to have to give up your baby for this period. Unbelievable stress - unfortunately stress plays into dysautonomic function so that is yet another factor to keep in mind.

Another member, Endure, had/has similar problems with temperature regulation. His problems started from a drug 10 years ago, albeit an illicit one. He is in Australia so not able to avail himself of places like Mayo or the National Institute of Health Rare Disease program (http://rarediseases.info.nih.gov/Resources.aspx?PageID=31).

I think you need to talk to the doctors about going to Mayo. You have so much testing already done but are missing the autonomic piece.

I hope the radiating therapy is almost done so you can move on to attacking the dysautonomia monster. Feel free to post here anytime to connect with people who understand (as much as is possible).

Wishing you all the best and sending positive energy your way,

noreen

[sue1234]

First, congratulations on getting over the Lymphoma!!

The only thing I would add is to make sure pregnancy didn't kick in Grave's disease. Autoimmune thyroid issues notoriously kick in after pregnancy. It would cause high heart rate, shaking of hands, weakness, and being hot(don't know if it would cause high fevers though). Make sure if they test her thyroid levels, they add in the TSI antibody test for Grave's.

I go to Houston for care, but wouldn't know off-hand anyone to recommend.

[jem15]

So sorry to hear what you guys are going through. Cancer is enough to deal with, and it's even worse when that's just "on top of things". Though my symptoms aren't as extreme as your wife's, (I dont have fevers or super high heart rate), I can relate somewhat to your story, cause I too got diagnosed with Hodgkin's, "on top of" whatever other mystery conditions were going on. My symptoms started when I was 16 after a virus, fatigue, lightheadedness, faintness, heat intolerance, etc....they said it was probably CFS cause they didnt know what else it could be...then about 13yrs later @ age 29, got diagnosed with Hodgkins. Then at 31 was diagnosed with POTS(form of dysautonomia).

In the year before the cancer diagnosis, all my usual symptoms got worse. The only really new symptom I had was night sweats, but no fevers. The cancer is supposedly in remission right now, but I still have the night sweats..with no other known cause. Also, like your wife, my symptoms got crazy out of control during chemo. I got severely dizzy, weak, faint, etc... my heart rate was often high(though not as high as your wife's) and I was not functional at all.. i had to move back in with my parents cause just sitting up took sooo much out of me. The thought was also that the "pre-existing condition", which was unknown at that time, was getting exacerbated by the chemo. I too got weird and "atypical" symptoms from the chemo.. everything I had they told me was atypical. they said people dont respond that severely to ABVD, ha, but i surely did. i got some neuropathy, but not in the form of pain, but numbness.. but what really helped for some reason was taking B12 and folic acid.. the pharmacist suggested it and surprisingly it seemed to work. Dont know if that will help your wife at all, but just throwing it out there just in case.

I finished chemo about 2yrs ago and though I'm better than I was during chemo, I'm still unable to work or drive yet due to the dizziness, lightheadedness, faintness, and fatigue. And I'm still worse than my "pre-chemo" state, and even then I was having trouble functional and missing a lot of work. Anyway, dont know that this info helps you at all...but just wanted to let you know that yes, chemo can definitely piss off whatever other condition is there, no matter what the drs tell you... and i still have night sweats for no apparent reason.. eventhough the cancer is supposedly gone... unfortunately i've found drs just dont know alot... but there is a reason for this stuff even if they cant yet figure it out, so hang in there..

the fevers are a strange symptom.. not sure if that's ever related to autonomic failure or not, but doesnt hurt to ask your doctors.. the lack of sweating can be related.. i think someone posted on here once about "autonomic fevers".. if you type it in the search engine on this site it should come up....

and I think someone mentioned this above, but you might want to try applying to the Undiagnosed Diseases Program in Maryland, run by the National institute of health. Ha, i applied a year or two ago and was rejected, but they like to find cases with more tangible things wrong.. dizziness or fatigue they cant see... but fevers.. hot patches of skin... that they might take a chance on, worth a shot.. though I know it'd be a distance to travel...

Best of luck to you and your wife, I know it's a crazy journey, but hopefully if you hang in there, you'll find answers one day:-)

[arizona girl]

Has your wife's "quantitative immunoglobulins" been tested yet. There are also the sub Iggs and vaccine challenges that diagnosis this. Your wife may have a primary immune deficiency. I have common variable immune deficiency. It very commonly associated with a higher risk for lymphomas and leukemia's and there very frequently is some other kind of autoimmune disease as a companion. Your wife's thyroid issues are considered autoimmune. In my case it is autoimmune small fiber autonomic neuropathy. This type of neuropathy controls all autonomic functions, including body tempertature and heart rate. The gold standard test for this is a skin biopsy and/or a qsart test. If she already had low immuno's then she would have gotten worse when she started chemo as it further supresses the immune systems. I have had roaring infections with little to no fever and an elevated white blood count and have fevers with normal WBC and a rip roaring female infection.

If she is low there is a treatment that is called IVIG it is an infusion that replaces the missing or defective immunoglobulins. They are also doing trials using IVIG to support the cancer treatments. You can google Primary immune or Immune deficiency foundation. Hopefully you have copies of all the lab work and tests she has had done, read through them and see if you can find a "Quantitative Immunoglobulin" it should show the levels for IGA, IGG, and IGM. If she is close to the low side on any of these, then she probably drops below normal anytime her body is trying to fight something off. This is a test for the total immuno's, you may see tests that look for high titers of immuno's for specific diseases as well, those being normal doesn't for a particular illness dosen't rule out a defect or illness that they haven't checked for yet. Hope this helps!

[jread]

Thanks for all the great replies and information!

Interesting to read about another person who had bad reactions to ABVD. Everyone seemed perplexed by how it affected my wife, even other Hodgkin's patients. ABVD is supposed to be a relatively "mild" chemo regimen, but it sure wreaked havoc on her from day one.

As for IVIG, she has had that a few times actually. Her oncologist gave her an infusion her first day in ICU since she had no idea what else to do. She told me that IVIG is sometimes useful for mystery fevers, etc. She was even considering plasmapheresis at one point (and it is still in the play book).

We may apply to the program in Maryland just to see what happens. Her symptoms match so many things, but not quite "exactly" like those conditions. It makes it so hard to try to pinpoint what is wrong. However, dysautonomia is something we have not looked into so I thought it was worth a try. As was mentioned, though, the spiking fevers are not typical even for this condition. Also, I have measured her blood pressure and heart rate sitting vs. standing and there is hardly any change, so I don't think it is POTS or anything, but who knows for sure. She definitely has not had a tilt test or anything like that yet.

[MamaTrain]

. Also, I have measured her blood pressure and heart rate sitting vs. standing and there is hardly any change, so I don't think it is POTS or anything, but who knows for sure. She definitely has not had a tilt test or anything like that yet.

Have you tried testing her BP and HR first thing in the morning? Take it when she is lying down and then when she stands. Take it at the 1 min point, 3 min and again at 5 min. That is when mine shows up big time. The rest of the day I really dont have that when I stand up. I was dx'd with POTS in January after 2 years of "mystery illness". I am inspired by your posts. What courage you both have and I am going to pray for your family! :-)

KC

[lieze]

She is so lucky to have you.

My husband is totally dense to my illness and I am not near as sick as your wife but he yells at me to go fix myself and that he's going to need a doctor's slip indicating I'll be on bed rest for life. ( let's hope not huh? )

I'm so glad she got you and not him.

My only suggestions are basic for now besides what you are considering as far as ongoing tests and that is to determine since the fevers worry you at what point to call 911 heart rate also.

I would ask at what point they want her to seek medical treatment for the fever, and when you see it go up since she may not be able to sweat on her own try starting to cool her off with a wet rag.

The body should cool from the evaporation of water off the skin and maybe placing some cold rags on her forehead, her underarms and her groin.

I think just having some maintenance parameters in the meanwhile until hopefully she totally recovers ( fingers crossed ) might give you a little peace of mind.

Kind of like if this happens - this is what I do.

I have issues with the fast heart rates and would go into SVT's.

You know I was just naive to the fact that people that have a fib and thing just have to live knowing periodically they may have to call 911 to have their heart rate converted. What a way to live huh? I guess asthma too?

I wish you the best. I hope she feels better soon and everything works out for your family.

[janiedelite]

Again, bravo to YOU for being such a great supporter while your wife was sick. I couldn't have gotten the help I needed nearly as quickly if it wasn't for my hubby. My illness and disability has been a big stressor on our marriage, but now that I know how to manage my symptoms better, we both have such an appreciation for each other. Reading your post was a wonderful testament of selflessness.

I probably don't have any additional advice. I did have to fly to Mayo in Rochester in order to be fully tested for autonomic issues. The great thing about Mayo is that if you're admitted for testing under one specialty (like neuro), you can be referred to other specialties and those docs will collaborate to try to find underlying causes for diverse symptoms.

So sorry you've all had to go through this. I'm sure it's felt like your life has been on hold. Congrats on beating the cancer! I hope you continue to make more progress.

[Sarah4444]

I just wanted to ask if you have read at all about mast cell disorders. I seem to have one along with my POTS, and from what I have read they sometimes occur at the same time as other blood disorders. I also have a family history of young women with lymphoma.

Sorry for all you and your family have had to endure, and for having to be separated from your baby. That's just awful and I really hope things improve soon!

[jread]

Wow, so many wonderful replies and great information! You truly are a great group of people and I appreciate all your kind words.

As for the question about whether or not I have looked into mast cell disorders, I have briefly but I did not see any mention of fever so I moved on. I will try to look into it a little further and see what I can find.

I guess the reason I think that her fever is autonomic and not inflammatory in nature (as it would be in something like auto-immune disease) is that it does not really respond to fever-reducing medication at all. Inflammatory types of fever typically respond to steroids or other non-steroidals like naproxyn, etc. Two drugs I have seen that work for autonomic fever are propranolol and morphine. One of the doctors did try propranolol on her but it did nothing. However, she was on morphine for pain when at MD Anderson and her fever did go away for a week or two while she was there. But, she was also on naproxyn at the time (which the hospitals here were not using), so it's hard to say which one did the trick.

[Sunfish]

i have several thoughts but first one additional question for you. does your wife still have the original port-a-cath? i know fevers started before it was placed, but there's still a reason i'm asking. off to sleep for now but i'll await your answer & then reply at length.

your wife is certainly lucky & blessed to have you.

melissa

[jread]

i have several thoughts but first one additional question for you. does your wife still have the original port-a-cath? i know fevers started before it was placed, but there's still a reason i'm asking.

It is very interesting that you ask this question, because yes, she does still have it. We actually went to her pre-op appointment this morning as she is scheduled to have it removed next Wednesday.

Now I'm quite curious about your reply because her doctor and I briefly talked about the possibility that the port-a-cath could be part of the problem. It has always been uncomfortable for her, and has even caused shooting pains at times as if it was pinching a nerve or something. Also, a few of her CT scans showed fluid buildup around the port, as if her body was rejecting it and trying to "get rid of it" since it is a foreign object. Her oncologist considered having it removed mid-treatment just to see if it helped matters, but my wife didn't want to deal with going through chemo without using a port so that idea was short lived.

They have kept a close eye on it to make sure it did not get infected, and so far it doesn't seem like it has been (no abnormal swelling and nothing in her blood cultures). Apparently when they get infected, you *know* they are infected.

Anyway, looking forward to seeing what you have to say about it. She did have fever before the port was implanted (which was only two days before she started chemo), but things were a lot worse after it was there.

[Guest tearose]

Wow, my heart aches for you and your family.

It is very difficult when dealing with the Autonomic Nervous System and the best person to "know" is actually the person who is suffering with the issues. This is my opinion based on my personal 20 years of living with ANS dysfunction....If your wife can focus a lot on her body and meditate she may discover some answers.

So sit down and consider this seriously.

My sense is from my personal experience, that when my temperature issues flare it relates to my kidneys. I am either retaining too much urine, drinking too much or too little water or my electrolytes are off balance. I have learned to feel the amount of sodium in my body. Yes, seriously. I can now tell when I need more potassium or more oe less sodium. It has helped me maintain my temperature better.

Has anyone checked out her kidneys? I am not just talking about the function tests. She may have cysts in her kidneys too. There is so much they don't understand and even if they "find" something they may not understand the effects or implications on our body.

I do believe that your wife has additional physical challenges from her cancer fight. Some nerve fiber damage may have happened and although the body will try hard to repair itself, some things don't grow back. Even new pathways may be different.

I can't offer you more than my support and prayers. I am so happy for her to have you for support. You are a very special and compassionate spouse!

with best regards,

tearose

[jread]

Something I have noticed recently: if she is hungry, the fever is worse. As soon as she eats, though, it starts dropping almost immediately. Is hunger a "trigger" for any of you?

[MamaTrain]

jread,

I would think it's more about blood sugar than "hunger". Now I am not an expert but from what I understand when you let your blood sugar get too low (for your body) you release some glycogen and norepinephrine. If you are producing alot of "epi" for some reason that can make you feel hot I think. Small high protein meals is what alot of us do to keep blood sugar in check. Keep researching...it's the best way to learn things!

Best wishes,

KC

[RockiesGirl]

For what it's worth I had a fever for about 9 months, it never spiked over 103, but it made living life a terrible inconvenience. I had every test although they did not put me with an infectious disease specialist. I had cervical and uteran cancer but did not need chemo or radiation after the hysterectomy. Ended up with an extended hospital stay (more than a week) where they discovered an abcess 6 weeks after my surgery? Now, I know that they probably had your wife on lots and lots of antibiotics but they tried several with me as well....it finally helped!!! But then all of the other symptoms started getting worse....Numbness in legs, hands, difficulty swallowing, dizziness etc. finally ended up fainting so much that I was not 'all there' and required another hospital stay. Also, my symptoms did and do seem to get worse when I am/was hungry or when GI issues flared up. Do not know if this helps but I wanted you both to know that at least it gets better. It has been 3 years and was finally diagnosed in Jan of this year.

Now with the meds., fluid loading and vitamin intake I seem to be handling things a wee bit better. With that said it has been a long road.

I might add that I believe this is something I have had all my life. It was just exasperated by the Cancer/abcess etc.

Thank God you are such a wonderful person and I think via all these posts you understand how helpful that can be!!! Best of everything, prayers and love to all of you!!!

Take care and please keep us updated,

Michelle

[kayjay]

Not sure if this will be of any help but I wonder if my Dysautomia might be related to an undiagnosed problem with Gluten. Celiac can be related to lymphoma. I used to have high temps all the time ( not as high as your wife ) now my temp is low. Has she been checked for Lyme? My husband had it and it can cause many problems.

I cannot say enough about mayo. I have been to Johns Hopkins and National Institutes of Health. Mayo in Rochester was the best place for me to get help. Best wishes to you and your family. I will be praying for you.

[Lovebug]

Hi Jread! Welcome, Congrats, & Hang in There! Your wife definitely needs you and you've really stepped up to the plate. God has a special place for you, that's for sure! Regarding your wife's temps, it really threw me off at first b/c not many here complain of temps. There's lots of flushing and some that have low temps but my thoughts are this: Dysautonomia can affect ANY & EVERY thing that is automatic in our bodies. Anything that the autonomic nervous system controls can be affected. Thermoregulation is definitely a part of this and just b/c others don't have this symptoms doesn't mean it isn't the primary symptoms your wife exhibits. I would highly suspect Dysautonomia since the doctors weren't able to identify anything else (infection, etc)....it seems to fit (especially with the heart racing & high BP). And the weird thing is that who knows what is triggering that particular symptom in your wife!? It's extremely difficult to pinpoint these things.

For me personally, I have severe abdominal pain along with other symptoms (heart racing, tinnitus, high BP, fatigue, frequent sore throats, dizziness, numbness, brain fog, & on & on & on...). BTW, I had a high EBV (virus causing mono) when I first got sick and I was diagnosed with CFS. ALL of my lymph nodes in my neck stay swollen.

Prayers are sent to you and your family. I so hope you will be reunited with your little one very soon. And God bless your parents for filling in when needed. Please keep us posted b/c once you're here, you're family!

[jread]

For what it's worth I had a fever for about 9 months

Was your fever during the cancer/abscess, or was it after that?

Regarding your wife's temps, it really threw me off at first b/c not many here complain of temps. There's lots of flushing and some that have low temps but my thoughts are this: Dysautonomia can affect ANY & EVERY thing that is automatic in our bodies.

See, that is the one thing that throws me off as well, though like you said, it affects everyone differently. However, there are common things that most people on here have (bp issues, fainting, etc.) that my wife does not have now but did have in the very beginning.

It is really hard to say. Some of the replies about nutrition have me curious as she constantly craves sodium (she even eats bouillon cubes sometimes, ick) and her potassium was always low in the hospital. It seems that maintaining sodium/potassium levels are issues for people with dysautonomia. Also, when her fever is higher her neurological issues are more pronounced: she gets kind of jittery and has trouble with fine motor skills (drops things from her hands more), and her neuropathy pain tends to get worse. Oddly enough, it does not seem to affect her heart rate (sometimes she'll be running 115 bpm with a low fever, and 85 bpm with a fever near 103).

It is all very frustrating, and since the doctors have seemed to stop caring about what is causing it, I feel like it is my duty to keep searching until I find an answer. The stance from the doctors is, "We have ruled out everything that can kill her, so this should probably run a benign course in the end." And while it is true that they have tested her for everything horrible and nasty, there is still no answer and that's something that I cannot live with. My degrees are in computer science, and for us everything is a 1 or a 0. There is *always* a reason for everything.

I think we are going to start by seeing a neurologist, and then also see a rheumatologist to look into autoimmune diseases. I do think that one of these (or a combination of the two) is the source of the fever. We know for sure that it is not "tumor fever" because her cancer is in remission, and we know that it is not an "infectious" fever because she's had an exhaustive workup for every infection they can think of. Plus, this has been going on for 6-months and I don't know of any infection that would run for 6-months without eventually revealing itself and/or getting much worse. Further, it does not behave like an fever from an infection at all: she doesn't get lethargic or light-headed, her skin doesn't get clammy, there is no sweating or chills, she just simply "heats up" and her skin flushes and becomes very hot to the touch.

I want to thank each and every one of you for your replies so far... every little bit of information helps. I can't imagine being in this situation back in the days before the Internet!