Need symptom help, please!

Hi all!

For the past week I have had a nervous/shaky feeling in my stomach and chest whether I am relaxed or not. On and off I have pain in the left side of my chest.

The chest pain scared me and I went to an urgent care facility where I had a full blood work-up, x-ray and ECG, all of which came back negative. Blood is perfect, platelets at 214, Hemoglobin at 130. X-ray did not show that my heart or pericardium was enlarged. Tests came back negative for blood clots(pulmonary embolism was a concern). ECG was 100% perfect. The doctor said "you look healthy so it could be anxiety...if it gets worse, go to a hospital".
It is not worse, but it is no better (four days later...)

Has anyone with ITP/Evan's experienced this? Is it possible that I am literally worrying myself SICK? I am at my wit's end...my family thinks I am crazy and now routinely roll their eyes at me when I speak about these symptoms.

Daniela, I'm sorry you are not feeling well. Probably already ruled out but there two things that I think of. My son with Evan's developed left side abdominal and lower chest pain while on steroids. They scoped him and found gastritis and duodenitis. Also have they checked your thyroid? Hyperthyroid could cause nervous/ shaky feeling. Hope you feel better soon. Joan

Hey Daniela,
Since the regular MD's don't find anything wrong on the more mundane level, I would suggest you go to a alternative doctor that deals with the more subtle plane. Try an acupuncturist or someone who does reiki or an ayurvedic doctor. They may be able to correct an imbalance that you are experiencing before it becomes manifest on the more physical level and you end up sick with something the Doctors can recognize.

It is absolutely possible that you worrying yourself sick. Prolonged Stress can affect the whole body!! Stress can really complicate existing health issues. I assume you are stressing out over ITP?? Try to Relax!! I know it is easier said than done.

Thank you all for your replies.

I have amped up my morning yoga routine, (Usually I do fifteen minutes, now I'm trying almost an hour) which seems to help with the shakiness.

Yesterday I went to emerge and was tested for cardiac enzymes in my blood stream. Negative! So cardiac health is not an issue at all. The doctors there think that I may have a deep pinched nerve in my chest because Tylenol does not help with the pain.

I have been steroid-free for three months and the alternative health practitioner thinks that it may be a strange reaction to my body pumping out the last of the prednisone. So for now I am going to keep doing yoga and try to relax.
Tomorrow I will make an appointment to have my thyroid gland checked.

Has anyone taken advil for pain when advised not to? My hematologist warned against it in February when my counts were very low. My sister(a pharmacist) seems to think that as long as my counts are steady that it should be fine to take now and then.

Again, thank you and all the best to you and your ITP-ers!

Hope the extra Yoga helps you Relax!! Yes, tapering off the Prednisone can also cause the side affects you are experiencing. We all react differently to this stuff. No, if your counts are low, you should not take NSAID'S, that contain Ibuprofen like Advil, Motrin, Mediprin, Nuprin and Motrin IB. Aspirin should also be avoided.
NSAID'S inhibit the clotting of blood only for a few hours, so with low counts this is not a medication that should be taken due to internal bleeding concerns. Now if your counts are within range, I have been told it is OK to take Ibuprofen, so I agree with your sister. NSAID'S will not cause Platelets to drop, but is dangerous to take if counts are already low. I took the max dose of Ibuprofen for 4 days per Dr's permission as my counts were within range. Did not affect my counts.
Take Care!!

My count was 214 on Monday, so I took one regular strength advil, I just need one night of uninterrupted sleep! But I am nervous! (Silly, right?) My hematologist is on vacation so I could not ask him, but my family doctor said that it is perfectly fine, but not to use it as a 'go-to' medication. Here's hoping I get to sleep tonight! Yaay!

When I had severe chest pain with shingles, the only think that would help was paracetamol and codeine combination, something called Solpadeine Plus here. Ibuprofen, what you're taking, didn't touch it.

Daniela - try not to worry about one Advil. For the past 7 years, I've taken 1,000 mg's of Naproxen daily plus aspirin. Hasn't affected my counts at all. Years ago when I did stay away from NSAID's and feared them like the plague, I had platelet drops all the time.

Daniela, PLEASE try to RELAX!!! Your stressing out is probably contributing to your sleep issue. No need to stress over the Advil with a count of 214. Have you tried anything else for sleep? Benadryl could help.

Update:

Still having chest pain...though I am now getting used to it haha. I also started with bad stiffness and pain in my hips and shoulders accompanied by a headache that is only made bearable with two extra-strength tylenol a day...plus my ears are ringing like I just left a stadium concert.

Last week I begged the doctor to give me an ANA test(which I have been asking for since my Evans diagnosis). My hematologist has told me countless times that it is not necessary and if my fatigue and joint pain were lupus signs they would not come and go(I have days where I feel normal and days where I cannot lift my arms nor legs properly).
Also, my hair has been falling out in clumps. My doctor says when you are pregnant or going through a crisis illness your hair goes into a resting phase and after you begin to heal your old hair is pushed out by new hair...has anyone experienced this after a few months of remission?

Long story short, my family doctor finally agreed to the ANA, GGT and AST(inflammation, liver and kidney enzymes) sometimes associated with Lupus. I had the blood draw and the Lab technician forgot to run the ANA test...(of course!) however, my liver and kidney enzymes came back perfectly normal. So I suppose for now, I am celebrating normal and healthy kidney and liver function. Woohoo! Tomorrow I go back for ANA round two.

Thank you all for your replies...sometimes I don't know what I would do without all of you<3
Best to everyone.

Lupus symptoms most certainly do come and go. Grrr that sets me off.

I have had Lupus for 7 years and have always had normal liver/kidney function results. I have had plenty of other results that have not been normal, so you'd need more than those few tests.

It really upsets me...my family doctor has said that I need to speak to someone about hypochondria rather than an immunologist.
I hope for hypochondria over Lupus, but I fear it is just not the case. My body changed when I started with ITP, I have not felt absolutely 'normal' for more than a week at a time since the diagnosis. And though many people do get symptoms like I do, I don't know anyone who gets all of the symptoms that I do.

Sandi: is there any test you can suggest that I ask for, besides the ANA?

I typed a long response and it got lost. I'll try to remember what I said.

Most doctors will start with the ANA. If that is elevated, they will usually add more tests. If a doctor calls you and tells you that the ANA is positive, you need to ask what the titer is. A titer of 1:40 or 1:80 is nothing to worry about. If it is higher though, 1:320 or 1:640, it is more indicative of an inflammatory autoimmune disorder.

The typical Lupus tests are: dsDNA, Anti-Sm, Anti-Ro, C3 and C4, Sed Rate, APS antibodies, and urinalysis (protein in urine). It takes a few of those, plus physical symptoms, to get a diagnosis.

Lupus can develop slowly, so it might take time for things to develop. A doctor can tell you that you don't have Lupus, but that just means that you don't meet the criteria NOW. You could meet the criteria eventually. It can be frustrating because many people have physical symptoms but it's not showing up in the blood work. I had ITP, an elevated ANA (1:320) and physical symptoms, but it took two years for a diagnosis. I was monitored every few months during that time and the Rheumatologist kept telling me that I didn't have Lupus, but he did keep testing and he did help me to manage the symptoms. Finally, one day I got the call that I had enough in my labs to meet the criteria. I loved him because he didn't blow me off like so many doctors tend to do. He listened and he helped. But it's odd; one day you don't have it and the next day you do. It changed my life, that's for sure.

Hopefully, you are just experiencing stress from the ITP diagnosis and side effects of meds. I hope that's the case. If you feel it's more though, keep pushing. If it takes more than one doctor, so be it. If you have any questions, ask away!

Thank you Sandi, I really appreciate the time you took to write all of that, I'm certain that you have done it before...

My ANA test came back negative, which leads me to think I am a hypochondriac...but my gut tells me something more is going on here. I have an appointment with the hematologist in September, so for now I write down anything I find to be out of the ordinary and I will ask for a referral to an immunologist.

I have a cousin who was having what we now know to be classic Lupus symptoms for about a year. Incredible fatigue, joint stiffness, acne on the malar region of her face and brain fog. Doctors reassured her over and over that these symptoms could be attributed to her period, stress of a new job perhaps the stress of her move to a new city and the demise of a serious relationship. Fast forward one month after a bad sunburn in Mexico, my cousin is hospitalized for Kidney failure, because the other symptoms were ignored for so long she had developed nephritis. She was so swollen that her rings had to be cut off and she had (still has...)stretch marks everywhere but her face. Because of all of the fluid retention her blood pressure got to the point where we thought she would have a heart attack. By some miracle she survived, but her lupus got so out of control that she was taking imuran, cell-cept and 80 mgs of prednisone daily for almost three years. Followed by a hip replacement and now another hip replacement.

My goodness, excuse the rambling...What I mean to say is that I have seen someone who is thought to be crazy, lazy or 'whiny' nearly be killed by this disease. So perhaps it is in my head...

Daniela:

You are pretty informed about Lupus, then. Sorry to hear about your cousin. Yes, that is the worst case scenario - things can go bad quickly. That is one reason why I always tell people to keep up with it if they know something isn't right, even if they have a doctor who blows them off.

My first Rheumatologist made me feel like I was wasting his time. All I'd had at that point was an ANA of 1:320, ITP and physical symptoms. That wasn't enough for him to want to follow up or do any additional tests. He told me that I was fine. Luckily I found a great Rheumatologist after that; the one I told you about who monitored things.

What stinks is that some people go for years not having anyone believe them because they look fine and labs are fine. I understand that there really isn't much that can be done at that point, but you'd think that Rheumatologists of all people would get the fact that people can suffer long before Lupus can be proven.

My advice: Be persistent about having repeat labs regularly. Make a point of writing down all symptoms and report them whenever you see a doctor. I agree that stress can mess with the body, but don't allow everything to be chalked up to that. And last, be careful in the sun (just in case).