Diagnosis Needed- Please Read

[bjess46]

After being diagnosed with mono 4 months ago I am just not getting better. I will have good days where I feel like I am going to snap out of it and then I am bad again. Mono spot testing is now negative as is the Epstein Barr. My symptoms are not always there- but have included a headache(back of head/neck mostly-always hurts), shortness of breath that comes and goes, high blood pressure at times- other times fine(never been low), times when I have been in the doctors office sitting with a pulse of 110 and 130(couldn?t feel it),stabbing chest pain, achiness, limbs fall asleep easy, dizzy, tingling in hands/fee/toes. I just feel bad all the time-sometimes real bad and know something is off.-I KNOW it isn?t just anxiety- maybe its contributing but not my problem. I wore a 24 hr monitor- it picked up an event 45 secs hr at 160- I know exactly what I was doing at the time and never felt it- happened at noon and I knew I was out at lunch, difficulty swallowing(real bad sometimes), thirsty always. I was referred to an electrophysiologist who isn?t so interested in the arrhythmia but wants to do a tilt table test to test for an autonomic imbalance. Do I have the symptoms-Did it come from mono? Could I have this being I am not getting low bp- never fainted. Please help!

[taylortotmom]

Welcome, Jessica. Based on your description of symptoms, you very well could have dysautonomia and the tilt table test is an excellent first step to potentially getting an accurate diagnosis. It is not uncommon for dysautonomia to follow a virus such as mono. Symptoms of autonomic dysafunction are as varied as the individuals on this board and can be transient. Sometimes, they make no sense whatsoever. As far s the arrythmia, most of the arrythmias (but not all) associated with dysautonomia are benign so that is probably why your doctor did not seem too concerned. However, even with a "benign" arrythmia you may experience extreme symtoms. I'm sorry you are having to go through this but this board is an excellent resource for information and support.

Carmen

[bttrflyamby1981]

Welcome Jessica,

Hope you find out what's going on! Good luck and best wishes.

Have you read anything on the dinet site? I found it very helpful.

Amber

[bjess46]

So what about low blood pressure? I have never had low recorded- I have also only had it taking sitting. Should it make a difference standing?

[morgan617]

Welcome jessica. Blood pressures can vary even in healthy people. No one on the board can dignose you.

This is a very frustrating illness and as Carmen said can be as variable as everyone on this board.

My bp never used to be low, but now flucuates quite dramatically. A Tilt Table is a good start towards getting a diagnoses. if you don't feel these fast rates, the doctors probably aren't as concerned because your body at this point must compensate for it pretty well.

The tilt will show any changes in blood pressure and heart rates. You do not have to pass out to have dysautonomia. And not every one has drops in their bp. For instance, mine goes way up. When you say yours is high, what do you mean by high? Do you have numbers?

And yes blood pressures in different positions will show a lot, as to how well your body responds to lying down, sitting up, and standing. This is what they look at with the tilt table.

It sounds like your cardiologist is on the right track. And yes, POTS can be triggered and is many times triggered, by a virus. The good news is, that, when triggered by a virus, there's a greater chance of more improvement or resolution of symptoms.

Look at the info site here and see if you can get any more info. Then you can jot down questions for the doctor. Good luck! morgan

[bjess46]

Have been to alot of doctors, bp has varied- first times it was like 135/90(first time in my life it has been high). I accepted it was from being sick-mono (yeah yeah), but then it was normal a few times then was 103/90, 130/94, 148/100, then normal some. I began to think it was always normal now and all was well and then 140/90, 150/90 and last 2 doc visits normal range. I would love to say oh I'm anxiuos but it should always be and I feel the same always- always have a headache normal or not. Pulse readings have been normal for the most part but once it was 130- I had no idea and looked at the machine wonderng if it was broken. Another time it was 110, otherwise always in the the high 70's to 80's at all other visits. I am athletics and have a heart rate

monitor I have checked at times and at home its always in the 70's. So what figures! Any advice please!

BTW only 25 years old

[morgan617]

Jessica, typically with anxiety disorders you will find the systolic portion of the bp (top number) can elevate, but the diastolic will not move too much.

I used to send people to surgery all the time (nurse in healthier days) The pattern was the the bp would not go up at all even with anxiety or just the systolic bumped up.

If those are your readings, then I would say your cardiologist is on track. The first test of choice for this illness is the tilt and until you do that, you will probably not get much further.

As ironic as it sounds, you are very lucky to have a doctor willing to do this or any other test this soon. If you read stories or posts on here, you will find that is not the norm at all. For most of us it took YEARS to get anyone to listen and for many, they are still struggling to find someone to help them.

All I can suggest is that you do the test and go from there. We all do understand your frustration and your desire to know this very instant what is wrong, but it just doesn't work that way sweetie. Follow through with the cardiologist, and I hope you will keep us informed as to what they find out. Many of the people on this board are in your age group, so don't feel like the lone ranger! morgan

[bjess46]

Thanks so much for respomses. From what I have read I feel my doctor even knows about such a thing. Question I have is- I have a daily awfu l headache- moslty in the back of my head. Is there anything that helps- tylenol, ibrouprofen- NOTHING touches it. I have tried a muscle relaxer that seemed ironically to almost make it worse. Thanks to everyone! Looking forward to tilt test- if thats something to look forward to

[Guest malosp]

"My symptoms are not always there- but have included a headache(back of head/neck mostly-always hurts), shortness of breath that comes and goes, high blood pressure at times- other times fine(never been low), times when I have been in the doctors office sitting with a pulse of 110 and 130(couldn?t feel it),stabbing chest pain, achiness, limbs fall asleep easy, dizzy, tingling in hands/fee/toes. I just feel bad all the time-sometimes real bad and know something is off.-I KNOW it isn?t just anxiety- maybe its contributing but not my problem."

You sound just like me when I was here in April 2006 or something like that.

I too had bouts of fast heart rate which were unexplainable as my heart tests came back normal. I had never had those type of problems before. In addition, my blood pressure went from good to very high at times. I was dizzy, insomina and yes the terrible chest pain and muscle aches. And finally I started with the tingling in the arms and legs AND it was then that I realized I could not have mono. That is what I was diagnosed with too - mono or CMV.

I know I can't blame lyme on everything. But I wish that someone would have posted to me like I am to you right now. You should at least check out lyme. And also realize that the labs may not test positive at first. I was negative my first 2 tests. It was not until I had the 3rd western blot (and it was not igenex that some people claim always comes out positive - it was MDL) that I came back positive for lyme.

That is why I went undiagnosed for over 11 months. I had negative labs. The doctors did not use a clinical diagnosis like the CDC says you should. And I guess in their defense many diseases present with the symptoms like lyme.

But you sound so much like me that I can only assume that there is a chance you have lyme. If you do you need to catch it as soon as possible.

Maybe go to a lyme literate doctor. Lyme forums have a list of reputable lyme doctors that are not quacks. I realize that not everyone on this site has lyme. I also realize that some doctors overdiagnose lyme....but what do you have to lose by checking it out.

But because I came to this site looking for help and I think I did say HELP in my post. I feel for you and I want you to have the option of making up your own mind.

The symptoms POTS and LYME are almost idenitical. Look at my NEW TOPIC post.

And you have to remember POTS is not a disease but a syndrome that is supposedly caused by something else. Well, maybe that something else is Lyme. Your pots may not go away after your treated for lyme. I think someone on this site says they were treated but not all their symptoms of POTS went away. But it is certainly worth the effort.

At least check it out and make your own decision. Some of my POTS symptoms are gone now...like the insomnia, the dizziness and the high blood pressure. My blood pressure came back down within 2 weeks of starting antibiotics. The paliptations are still there but my doctor thinks it is the nerve to the heart that is irritated and will improve with treatment.

I would feel bad if I did not at least point out to you it could be lyme. Again I wish someone would have gave me the option to make up my own mind and posted if they recognized my symptoms as possible lyme.

Take care.

[bjess46]

HEY~

Thanks for your post. I will defineitely look into it. I live in Florida and my doctor had discussed it- but I think tjust glossed over it- saying I was from that area of the country? I was born in Indiana and have lived most of my life in Florida. I think I will seee a disease specialist too- at this point. I keep trying to wait and be optomistic but I don't want something to get worse. I think its good that I am not exactly gettting worse- I used to not be able to do ANYTHING but now I go online and sit upright much more and have even gone to church a few times. I might add I feel bad all the time- but the fact I would consider walking into a church- I could not do that at times. I am very very easily overstimulated. IT is all too werid and very annoying. Sad but glad you can relate, how are you doing? BTW I have been on alot of different broad span antibiotcs- what were you prescribed?

THANKS SO SO MUCH!!!!!!!!!!

[Guest malosp]

Hi there,

I have never been on antibiotics. My doctor thought it was virus - this wan an infectious disease expert - and of course they don't give antibiotics for viruses.

If you have been on antibiotics maybe it wasn't long enough. The current research shows that you need to be on a significant amount of time to kill the lyme. If you have been on short courses of anitibiotics the lyme will just come back when you are finished.

The current lyme literate doctor approach is "no symptoms plus 2 more months". That could for someone who has been ill a while be well over a year. But hey, it is better than not killing the creepy bug.

Florida is big for lyme right now. All you have to do is get on the lyme boards and it is filled with Florida posters.

In addition, I thought I was getting better to or not progressing. I was sicknest November, December 2005 and then in January felt like I was getting better only for it to come back bad in April. It was then I knew that I didn't have mono.

If your symptoms wax and wane but never truly ever go away then it could be lyme. Lyme can go into remission and come back months or years later.

I am currently on tetra - week 3 + 3 days. Feeling pretty yucky. ANd angry that I wasn't diagnosed sooner but all and all at least I have an explanation for why I had all that weird stuff....just like you I felt overstimulated, wired, couldn't sit still. Unrestful sleep. Now I finally sleep again. It is worth that in itself to be on antibiotics even though it is killing me to think I may have to be on them for a while.

So I am glad you at least got my post and you can decide for yourself. I knew immediately when I saw the symptoms from the lyme boards - there was no doubt. And the antibiotic reaction only confirmed it.

[Gena]

Jessica,

I hope you find some results and treatment soon. Please keep us posted.

The only thing I have to add to what others have already said is regarding the headaches.

I get the back of the head pain too and sometimes lasts for days or a weeks. What helps me most is an ice pack on the back of the neck for about 10 minutes and leave it off for a while then do apply again.

Pain relievers like Advil and Tylenol just don't even touch my pain, but I do find the ice helps.

Gena