Heat intolerance, fatique, no energy

[js59]

Hello, I had not been diagnosed yet. I saw some doctors but they don't know why I have those symptoms. Basic blood work came back negative. I have a huge heat intolerance, with temp over 71 F, can not take warm bath, can not eat anything warm,I have hard time to concentrate and communicate, abdominal pain, pain in left leg and hip.  Soon as the heat will hit me my face and fingers will be like on fire. I am having the same symptoms with emotional stress. When i have stressful situation  immediately my face is like on fire, I am having very dry heat in my face(it is coming from inside me, my breath is hot) and color of my face is deadly white. I think that something is happening with blood float at that moment, almost like blood is not coming to my face. The same time my fingers will get very swollen, fluffy, red and hot (I think the blood from face goes to fingers). When this happen - immediately I have pressure in my head (feel like something cracked in head), I get very fatigue and tired, have no energy. I have to lay down. I can not eat or drink anything warm, If I have only one sip of anything warm I get big sharp pain in my stomach/esophagus all my body will shake, huge heat in face and fingers, extremely fatigue, totally drained, sick, I have to lay down. I am not eating warm food for 8 years, I can not be outside in summer time, I can not cook (heat from stove makes me sick, even steam from warm plate would make me sick). Can anybody help me, please?

[44top]

I have autonimic dysfunction along with B-19, severe fibromyalgia and severe chronic fatigue synrome. I was diagnosed withes this by a top university medical research center. The heat and humidity make things terrible for me.

[js59]

Thank you so much, I will let you know soon as I will have some progress with my appointments. My next App is with GY and neurologist in Boston next month. I will be working with them on my appointments to Harvard and to Mayo.
You are very lucky you have your parents around, my parents are far a way. Your eight years old must be beautiful. Be good, I love you for all your help and support.
Js.

[Kavbear]

It is great that your primary doctor is good at sending you to see other doctors. I would see him and ask him to call Mayo. I would call the person you spoke with and ask if your doctor wanted you seen there where should he call.
I do have back problems but was in a car accident so I am not sure if the two are related.
I am ok, I am having serious brain fog issues and can't seem to get out what I need to.
Different things happen at different times, I am still finding my way but did not get a diagnosis until April.
I am lucky that my parents are helping us, I have an eight year old.
Good luck with the Harvard doctor.

[js59]

I do have primary doctor, he is great to sending me to diferent doctors, but non of them has any idea what is wrong with me. He will give me any refarral I need.
I just received paper work from that doctor office who is professor in Harvard. Next week I am going to make an appointment with my regular GY, I need to fax written summary from her to them. Ones they receive it they will schedule an appointment. I am thinking about to have pelvic MRI done. I never had one, I have constant pain in my  left thigh/sitting bone shooting to vulva(I feel like I have big knot there and also I feel like I have tight rubber band around my leg). Connection between those two pains is my what I believe main problem. In vulva (if you look on clock it is about where 4 is)is the open cut (my GY said it looks like she can see glands..??)The pain is so huge that I can not wear underwear(constantly). There is not just one open cut anymore, it did spread it around. I have follow up app in July in Mass General hospital-neurologist. I already saw him twice and he has no idea what to do. He has done test for Lupus (negative).
Did you ever have pain in spine cord? I do have all the time in middle of spine(where stomach is and little bit above) and when I get over heated then it is going through all spine, specially higher up to my head. I had bad day today, it was very hot here and soon as I have open door the heat outside hit me and I got sick immediately. Just coming from house to car.
How are you feeling now? Are you still having a lot of problems and what is helping you? Do you think my problem is neurological?
It look like you have a lot on your plate and to be single mom and not feeling well, it must be very frustrated. I am married but I do not have any kids.
How old is your daughter?
Thank you for your help and have a great weekend.

[Kavbear]

If I am looking at the right thing that woman is a prof. at Harvard. If she is in your area I would see her first. I would talk to her in your appointment about the other medical issues you have but don't know why and tell you you really feel you need a head to toe evaluation and see if SHE would refer you to Mayo. Other doctors have more pull then people who self refer (from what I have seen)
Also do you have a general practitioner? I would see them and tell them everything and get a physical too. I would also get a summary from that person.
In my experience the Mayo does not want a thick file of notes, I was told to only bring lab results and tests that I could get films, or the actual reading for not a doctors report (I brought everything I could get my hands on and did not use almost anything except the films BUT I would bring everything again, JUST IN CASE)
My primary doctor kept sending me to other doctors and finally her boss who has been a doctor for close to thirty year, while both my primary doctor and I are both 35, so her boss has seen so much more then she has. He brought up going to the Mayo clinic and she is great at going with anything that makes sense on the other hand many doctors I saw did not think I needed to go to the Mayo but could not tell me what was wrong.

Lastly I would call the Mayo and see if someone speaks Czech. and see if you can talk to them and get to a patient advocate.
Still be precise and "boil it down" .
I was denied by the Florida Mayo clinic because I gave them every last thing from the tiny to the huge.
When I spoke with the main Mayo (the one you called) I asked myself what was making my life so bad that I could not take care of my daughter alone (I am divorced)
I had sudden unstable blood pressure (really high and really low according to the doctors here), I had been told I was having neurological issues (Ataxia, Hauffmans and Clonus but MS had been ruled out), and lastly I had been told I had Lupus and/ or Fibro. but some tests were positive for Lupus and then retests were negative.

I left out the nausea, no period, cramping, depression, anxiety etc.
I could get up and drive my daughter to school with those or get us out in a fire, by the time I was scheduled to go to the Mayo I am not sure I could have cared about a fire or done anything to get us out.

Just remember you are your best advocate!

[js59]

I am from Czech Republic, my first language is Czech.
I don't think I can make any appointment yet until they will make decision if they want to see me or not(that is what she told me). So I think I need to see my GY here and ask her for the summary. I am sure she will give it to me. But it has to be strong approach from my doctor in the summary letter otherwise they will not want to see me. I think...I don't know....If I talk about herpes, nobody think that it is a big deal and that it can harm me so much....so It is really very hard to "sale" this. I have so much similar symptoms like people with lyme disease but they don't believe that H virus can do so much complication as any other virus. Very frustrated....
What do you think about the vulva researcher/specialist Dr. Elizabeth Stewart here in Boston? Don't you think I should try her first? Did you look under her website?  

[Kavbear]

Hmmm
If I were you I would talk to your GY and have her write a one page summary (if she will) stating what you just said about the Herpes issues.
I would call back and use you clinic number and explain English is not your first language and see if someone in GY is an Internist, I would tell them you are nervous.
I would make sure they understand you are seeing the GY because you need a second opinion about how to treat your Herpes. Remember you do NOT want to overload the GY dept. with information.
Using the clinic number I would make a neurologist appointment.
First may I ask what your native language is?
I am thinking about how to approach this so you get an appointment.

[js59]

Hi Kav31675, thank you for all your help again. I called them this afternoon. I am so scared... I am afraid that they will not believe me or something like that....I called GY, she did temporary registration and she gave me registration number. I told her about my huge pain in vulva and heat intolerance and that all this symptoms came after herpes infection. Also I have told her that I am looking for their help, because my doctors are not sure what to do with my condition.  She said that she is not sure if they can help me with the heat, that maybe I need to see different doctor. Then she gave me a fax number and told me to fax them files from my doctors and some type of cover letter from my doctor. Then she said ones they will receive everything they will make decision if I am qualified for this visit or not. I am very nervous that they will not qualified me. I am not sure what they will see in my doctors notes because there is nothing showing in blood works or in any other type of tests what they had done.
I was so nervous when I talked to her about everything that I forgot to ask her about the internists....duh....
So do you think I should see my regular GY to get all the paperwork from her? Do you think I need send them paperwork from neurologist as well?
Oh dear, I just hope they can help me.
The other day I found some doctor in Boston area who is GY with vulvovaginal specialty http://www.power-surge.com/transcripts/stewart.htm Let's me know what do you think about this doctor.
You know, I am realizing now how stupid I am that I never went to see different GY. I am very easy going, I have a lot patience, I am not complainer and I am very good listener. For 12 years I have seen the same doctor but she has no idea why I have those very painful open cuts in my vulva and she have never send me for some more research. Every time I told her how much heat intolerance I have she would say it is menopause, don't worry about it. And when I told her how much sick I feel almost every day, I don't think she believed me.They don't listen, do they?If you don't have some type of sickness what they deal with on daily basic, they have no idea what to do with you and so then they blame your head on everything........ or anxiety !
I was researching some hotels and such already, but it would be great if you will give me your advice on this ones again.
I am very thankful, I hope you are feeling good.
Sincerely best regards Js.

[Kavbear]

Sorry it took me a few days to see this, I missed it.

The Mayo will also know if your insurance is taken or how to best work things...

1. I think you need an internist on your team because you need a general doctor who specializes in looking at the body as a whole. They will also be the "driver" of your trip.

2. I would let them know when you call the GY that it will not be your only appointment and because at home they are having trouble pulling everything together you want to have the most through exam.  (Here I don't have any answers as to what they will say, I have a very distant relative, so much that we did not know the other existed until I got sick and then my uncle mentioned that his uncles daughter had a daughter who he thought worked at the main Mayo clinic , I was so desperate I found her and introduced myself via Facebook and after she spoke with her mom WHO I do know to make sure I was not some crazy person she asked me who I needed to see and scheduled it...once scheduled my internist took over and made changes as he saw fit for the issues I had given them)
Sorry about that weird explanation but its the only way my mind would work

3. Sleep is a department that deals with issues with sleep and preforms various degrees of sleep studies. I saw both a neurologist and a critical care/ pulmonologist who are both also licensed as sleep specialists, from what I got most sleep specialists are also specialists in other fields.

4. I would look at my symptoms and decide what doctors I needed to see, my internist was in the cardiology department so while I did not have an appointment with a cardiologist, I saw one during the end of my Echo and another consulted with my internist who specializes in cardiology (From the doctors I saw there I don't think any of them had only one area of expertise.....My internist is one who works with patients that have cardio and other issues where a cardio. is more limiting....Does that make sense?
I would schedule at LEAST a neurologist what you are allowed to schedule depends on what symptoms and issues you share with them.
Example : I had not seen a endocrinologist and my GY here thought I should so I asked to be scheduled for one and the main internist there canceled it (I did not list anything to start with that would say I needed one though) once I was there it was added back on by another doctor when some of my blood work came back not normal.

Once you are there they are very good at getting you in and even encourage you to go to appointments early. While there you will see as what I was jokingly told was the hurry up and wait exercise plan and the starvation diet since you go go go and are already sick and food becomes unimportant.
Once you know you are going and scheduled I can give you Mayo tips not doctor related (like hotels and the shuttle that runs so you don't have to drive or stay in one of the connected hotels, where food is, what is rush time etc)
Good luck and if Mayo does not work then there is the Cleveland Clinic in Cleveland.

[js59]

First to Heiferly coment...I understand now. She is absolutely right, your post is such a great advice, it should be edited at some major place where it would be helpful to so many other people....
Now - I will be making some phone calls tomorrow. I will call to insurance company also to find out how much they would cover the cost.
Questions:
1. why it is so important to make an appointment with internist?
2.Ones I will  make my first app (GY) should I let them know that I will be making more appointments, or that I need to be seen by different doctors?
3.What  "sleep"  is? I did not know something like this exist
4.should I make app with neurologist & cardiologist?
You don't know how much I appreciate your help! Thank you again.
Best regards! Js

[Kavbear]

I am not Heiferly but I thin she wants to use my post as a starting place for advice to get help at one of the major places. Your specific information would be removed.

The first thing I would do is call the Mayo Clinic in Rochester Minnesota and talk to the person making appointments in the Ob/GYn department.
I looked and here is the link for them specifically.
http://www.mayoclinic.org/obstetrics-gynecology-rst/
On that page it has a link for make an appointment and call and do it.
Remember to call and ask along with gynecology you want to find out if they have internists in this departments. If it were me I would request an appointment with the internist AND the gynecologist.
Remember to be brief and tell them you have Herpes and it is causing you issues that they doctors you are seeing can't get a handle on.
If they do not have an internist then if the Gyno. thinks you need one they will schedule you.
After you have a appointment and patient number start making other appointments in other departments
Gastro (when you call that department directly you tell them why you want to be seen)
Sleep
anything you can think of
The Gyn. can and will change your schedule add subtract.
Start with looking at that link and making a call.
Id look over the whole site and I can help you along the way but you need a starting place.
Before you call think about it and write very brief reasons you want to see the doctor, what symptoms make your life BAD, boil it down so they do not get overwhelmed, they will make time for you to tell them everything once you are there.
So first look over link and let us know what happens, if you do call and need help and I dont see the post message me.
Good luck!

[js59]

I have one more question. When I will be making those appointments how they will designate who is going to by my main doctor?

[js59]

Thank you for supporting me Heiferly.
Are you asking me to edit this to somewhere else? Do I understand this right?

[js59]

Thank you so much for you advice. I think I need to go there. I will start working on it. You gave me a new hope. I can not get any answers from my doctors. They don't believe that I can get any of those symptoms from herpes. They don't believe that I am so sick. They think it is all in my head or it is anxiety. I do have question regarding the appointment. I am littlebit confused about that part when you specified to make app with internist gynocologiest? Can you explain me this again? Sorry.......
You don't know how much I apruciate your advice. Thank you and have a good evening.
Js.

[Heiferly]

This is really excellent advice about getting a comprehensive multi-specialty diagnostic workup at one of "the biggie" hospitals!!!  I'm thinking we could really use something quite similar to this description (sans the case-specific parts for js59) in our health pages.  Would you be interested in editing this into such a description, or allowing one of us co-CLs to edit it for you (we'd give you a chance to OK it after we edit before we put up the health page, and you'd get credit since you wrote it)?  I think it would be a great resource for many MedHelp members here on our dysauto forum!  Think it over and let me know what you think.

[Kavbear]

Many health issues are hard to talk about but we have to keep talking or get sicker. I had a neurologist say I was faking things and was in and out of my room in the hospital in less then five minutes. He of course did not say this TO ME but when I got my files to take to the Mayo Clinic there it was. I have yet to get his bill but if so I am sending him a note back about this and it won't be nice.

There are several places in the US that you can go to when no one else knows what the heck is going on. The main two are the Mayo Clinic in Minnesota and The Cleveland Clinic in Ohio, both of these places have branches but the branches are NOT like the main place.
You go to there and have one main doctor and then they send you to see other doctors and have every test needed done and they all communicate and have access to look at everything and as a team come up with an answer.
I asked someone who has been in the medical field for over 30 years which of the two I should go to and he said first Mayo then Cleveland.
There is a branch here of the Mayo Clinic in FL that refused to see me as a diagnostic patient because I had too many issues, the Main did not BUT I only gave them the three issues that really made my life unlivable and kept my words short.
Example if I were you and I was going to go to the Mayo clinic in Minnesota
I would call the gynecology department and ask if they have internists who work in the department (this is a trick I learned if you call and try to start with an internist in the department that handles internists its many many many months) I would ask to set up an appoitment with the internist in the gynecology and I would set up a appointment with a gynecologist. I would make an appointment in gastroenterology, sleep. etc.
I would make as many appointments as possible ahead of time and plan on being there a week or two, once you are there they will work their hardest to get you in to see everyone you need to see and every test you need done but you have to get in and the more appointments you have set up ahead of time the better of a chance of getting everything done.
I would tell them
1. I have had herpes for 12 years and list 3 serious symptoms that go with it
2. I can not eat heated food or drink and then list 3 serious symptoms
3. I would tell them I have had constant fatigue and list three symptoms
I would also ask about getting an interpreter, they have them for patients and why add to the stress OR maybe there is a word in your native language that we do not have in English that best fits a symptom, their job is to get that word in English to the doctor.
Once you get there with your files you can get more in depth with everything but you want to be brief to get in.
I looked at my list of symptoms and said ok which ones make me not be able to live alone and take care of my daughter and started there. Once I got there they got the whole list and all tests and I had all my medical files but they did not really need them.
Because your symptoms are not only in one area I would plan to be there two weeks. I started at a week but so much was added and some of the tests and doctors are harder to see.

[js59]

Hello and thank you for your response. You know, it is very embarrassing for me talk about my STD but I do have to .... I live in NH, I had HIV and syphilis test done 12 years ago, I had MRI of spine cord and brain, EEG, ENG, tilt table (last year), basic blood work &for lupus,sugar level, some thyroid tests ( all this year), colonoscopy, endoscopy (two weeks ago). I have to say that over the time I feel better somehow but I feel worse somehow too. Let me explain this to you: 12 years ago up till 5 years ago I had a huge pain in vulva(one open cut where I had the lesion), huge heat and pain in pelvic floor,hip, thigh shooting to my leg(all left side of my body), low back pain, spine cord pain like something was pressuring, abdominal pain- at that time I could not eat anything but salads, every time I ate I got full very quickly, got big pain in stomach, pressure in my cord, pressure in my forehead &nose, heat in my face, my body was shaking like I was having a fever. At work I did have to lay down on the floor for about 45 minutes to get my energy back. I also was having presuring pain on back of my head/end of spine cord. And I forgot I have very broken tongue-open cuts looks like(it is painful).All those symptoms I can say I do not have any more except: open cuts in vulva multiplied, tongue is the same,pain in pelvic and hip is the same, much less abdominal pain, huge heat in my face constantly, untolerated when I have emotional stress. At that moment my face is like on fire, crack like in my head and after that I am totally sick, can not function at all, shaking like I am having fever. Oh and i forgot, I have the same symptoms when I drink or eat anything warm. And I have heat in my fingers.
Integrated manual physical therapy is the only treatment what is helping me for last 6 years. Thanks to them I can eat better and I can live better.
I never heard about head to toe look and I have no idea where they do tests like this?
Thank you for all your help, take care of your self and have a good Friday!
Js :)

[Kavbear]

I read what you have written and think you need a head to toe look. What area do you live in?
I am also confused about when you have had tests run....I see there have been some ran but it looks like they were spread over years, lots of years. What have you had done recently and are things getting worse over time?
Did you have other STD tests run? (I am not sure why this is important but when I was at the Mayo Clinic I was asked and tested for them)
Do you take medications for herpes?

I got sick last September and was seeing seven doctors who kept pointing fingers at the other or shrugging, after dealing with this and getting no where but worse I had no option but to go somewhere where I could be looked at from head to toe and psychologically. I did not know how I would get there and did not have the money to fly from Florida to Minnesota, stay in a hotel, oh and after a hospitalization I had to take a second person because my memory became so bad they called my family and said it was unsafe for me to travel alone but I started praying and it happened.
My life was saved by having this diagnostic head to toe look. There are few places that do this but they do exist.

[js59]

Hi Tonyad,
I hope everything is well with you. I would like to ask you what do you think which doctor should I see and what test should I have done? I can not get any answer from doctors, I know all my problems are related to herpes, but doctors are saying that herpes is pretty much not a big deal and they can not cost problem like this.Do you think my problem is related to autoimmune disorder? I saw neurologist twice but he has no idea why I have those symptoms, I don't think he believes me how much I am suffering with this.and how much pain I have each day.I don't know if this is your expertize, maybe you could tell me what other forum should I go to? I looked in to herpes community, but I have not see any post what would help me there. It seems to me like I have some complication cost by this virus. Please let me know what do you think I should do? Thank you very much.
Js

[js59]

Hello Tonyad, you do not have to be sorry....I understand and i do have a lot of patience.Life is sometimes very busy...
I don't think you posted that link....can you please?
Thank you so much and I hope you are doing well.
Js

[js59]

Hello, thank you so much for your comment and for your advice. It means a lot to me.You are absolutely right about the stress. My speaking is fine if I am not stressing. But...I am stressing daily. It is my job what is stressing me.... I love my job, don't get me wrong. My bosses telling me that I am very good at it, they promoted me over the years twice (I did not asked for it) but I am stressing constantly, because the second language. I am working with public, so I have to talk & I am managing ten people.
Now to my medical problem...
I did not have too many testings done, I just know for sure that I have herpes 2. And that is when all my problems start. I was very healthy before. Please when you have time and your brain will not be mush.... pleeeeeeease look at my posts again. Any advice would be very appreciate it. Thank you and looking forward to hear from you again. Js

[Kavbear]

English is my language and suddenly several months ago I started stuttering, losing my words and the more I stressed about it the worse it was. Having dealt with anxiety myself the first thing I would say is slow down and find a way to not sress over your speech, you wrote more coherantly then I do sometimes.
If you are going to be in a place where you need to speak and you know what you are going to have to talk about make notes out so you can read them or show the person.

I don't have much medical advice at the moment except I was told autonomic disorders often start with a bad virus. Have you had any testing done? I have all the symptoms you listed to some degree and some days life just isn't happening, now that I have a good diagnosis, am getting off the wrong medication, and doing several right things I am able to do things that seemed like I would never do again.

Good luck, when my brain isn't mush I will look at your posts again and look at my medical tests again and see if there is anything I can add.

[tonyad]

   Hey JS,
     I apologize for not getting right back w/ you like I said I would....I have no excuse other than I "Forgot"!  So Sorry  :0


    Here is another link. Please make sure that you read it all because it pops in and out of the topic of intrest for you.

Again, Sorry for being late,
~Tonya
    

[js59]

It sounds very good. Thank you for all your time Tonya. I really appreciate every post comment from you.
JS