Discussions By Condition: I cannot get a diagnosis.

Help, years and worried

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: ClotplusMany
  • February 12, 2008
  • 00:00 AM

Hello, I have had these symptoms for years and they continually are getting worse. I am worried I am past the 'half way' point now.

Since I was 22, I started to get asmtha like symptoms. Doctors put me on singulair and an inhaler (although doing a full test for asthma showed nothing). Then I had an allergy test which showed nothing extreme. Finally the shortness of breath progressed to 'not feeling well' in general, dark circles under eyes, and a pinch in the chest. I was sent to a cardio Dr. and they ran a stress test - they said I was fine. I explained that I could get the pinch in my chest to go away and feel GREAT if I worked myself up for an extended period of time (cardio) but I would feel a great opening sension where the pinching was. I was then prescribed xanax b/c they believed it was anxiety. Shortly after this I had a swollen spot on the top of my foot. One Dr. said it was muscle related and I needed to buy $100 sneakers. I pushed and pushed with other Dr.'s, finally got a sonogram and they found it was a blood clot. It was superficial.

This has continued for almost a decade (I am 31 now). Finally blood tests have been taken and they found an elevated PTT count and an inhibitor that does not correct with mixing (he said something about immune issue). I am awaiting more test results (almost 1 month between!). I constantly am tired now, constantly and have had many more clots. The oncologist told me to start taking daily aspirin (small dose) which did help get ride of the obvious clots. I still dont 'feel well' at all, have dark circles under my eyes that vary during the day from GREAT in the morning to super dark in the afternoon. Whenever my eyes are really dark I usually feel my worst, the pinching, hard time concentrating, etc. The worst thing is feeling like I'm 'getting dumb'. Feeling like this constantly makes it hard for me to concentrate on things or make the gears turn to think like I used to. It is worse than feeling like I have cotton in my head.

Lastly I have muscle aches that mostly stay in my legs. My ankles are the worst and they are what get swollen spots (nothing ever large). The worst is top of my foot or hand where it is VERY small but obvious on the foot (by red raised spot). These aches do not have a great deal of swelling but sure feel like they should. It usually hurts worse in the AM when I wake up and try to walk.

The only other thing of significance is I had sinus surgery a few years back (when they beleived it was my sinuses causing all these issues) and also had a colonoscopy and endoscopy when they thought my chest pain/pinch had to do with that. They did put me on nexium (until insurance no longer covered and had to switch to aciphex). They found some light swelling and a hiatal hernia.

Please respond. Family history: Vasculitis, Leukemia, Cancer, Heart Disease, Lupus.

I have been fairly healthy (5'9" 180lbs) for quite some time. The only thing that helps me feel better is if I stay constantly on cardio and eat well (which is fine but c'mon!)

Help?

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12 Replies:

  • When you go back for the results, make sure you pin the doctor down and have him state your diagnosis- maybe even write it down for you- if he has made it. If he does not have a diagnosis for you yet, ask him to write down the differential diagnoses for you, and ask him what other specialists you need to see to get diagnosed. I hope this isn't the case, but you may need to get copies of all of your labs, and search his list of possible things it could be on pub med or the internet to find out what you have.Another option, if it's possible for you, would be to go to a teaching hospital. It sounds like you need to see a rheumatologist, pulmonologist, and hematologist who can figure this one out for you. They may need to work together. It would help to bring in copies of all the lab work, abnormal as well as normal, that you have had done so far, so you don't waste time and money repeating things you have already been tested for.Good Luck to you.I am sorry you are going through this.
    Anonymous 42789 Replies
    • February 12, 2008
    • 02:13 AM
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  • I was just wondering- what kind of cancers run in your family?Also, is your actual PTT number too high or too low? Generally, the higher the PTT, the longer it takes your blood to clot. So a low PTT is associated with clotting.
    Anonymous 42789 Replies
    • February 12, 2008
    • 07:46 AM
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  • Elke: First regarding the PTT, I am worried I might be going to the wrong Dr. because those are the words he used. Yet when he tried to explain it in 'laymans' terms he explained that my platlets are always extra 'sticky' and when they touch they stick together (this is where he brought up the inhibitor). For cancer mostly it is Breast cancer in the females (very prevalent on both sides) but my grandfather did have stomach cancer (I beleive - I know it was somewhere in that area I need to re-check). Thank you folks for the fast responses! I never would have thought of lyme disease, funny thing is there is a LONG time family friend who had it for decades before they finally found out and it about ruined her (wheelchair etc). This would not explain the clots would it? Or would it explain strange swollen areas that might NOT be clots but swollen areas as cause of lyme? Anyway calling my new GP this morning to make an apt. to get one of the lyme tests. I have 10 more days to wait until I go back to the oncologist. He is very unsure as is the lab as to what tests to run. They took a great deal of extra blood to store in their freezer in case they come up with more ideas. I just want to thank everyone for posting on this again. The most frustrating thing for me is having Dr.'s who just throw medicine at me like it's a fashion. Constantly treating symptoms or blaiming anxiety or just plain old thinking I'm being hyped up and worried to the point of 'making it true'. I wish I was! I just want to find out what is going on and get it fixed so I can be my old self again.
    ClotplusMany 7 Replies
    • February 12, 2008
    • 01:46 PM
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  • Sorry meant to add this but for some reason I don't have the option to edit post. The oncologist is also a hematologist. He is unsure of what to tell me, said it's still 'new science' in the area of immunity deficiency (which he knows I have some form of). But you now literally know exactly what I know from the first round of testing. I am definitely going to take your advice and have him write down everything/anything I can on it (I will be bringing notes based on your posts since lately it seems hard to concentrate and remember things I normally would w/o an issue).
    ClotplusMany 7 Replies
    • February 12, 2008
    • 02:09 PM
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  • Does Factor V Leiden sound familiar? This is a genetic problem with blood clotting.
    aquila 1263 Replies
    • February 12, 2008
    • 05:46 PM
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  • Doesn't sound familiar but I think that MIGHT be one of the things the last Dr mentioned is testing for. I remember him talking to the lab tech asking what 'factor's' they should test for. I added that to the list of things to ask about. The biggest thing that is bothering me is still 'thinking through a cloud' where it is starting to feel like a physical pressure in my head and really messes up concetration.
    ClotplusMany 7 Replies
    • February 12, 2008
    • 06:39 PM
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  • have you been checked for pleurisy: http://www.webmd.com/a-to-z-guides/understanding-pleurisy-basics try to schedule a Electron Beam Tomography Angiography (EBTA)...it will get anything related to the heart but you usually have to pay out of your pocket..
    Monsterlove 2921 Replies
    • February 12, 2008
    • 07:01 PM
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  • I have the CBC counts now from a regimen done on 1/3 and again on 1/31 if that helps? Also just got a lyme test and thyroid test done today (Dr said it was a 'standard' lyme test and did not have the specifics). Will find out in a week, then I should also find the results of the new test's the hematologist did. So far from reading his lab work all I can understand is typed at the top of the CBC: Diagnosis: Other Hematologic Disorder Seems kind of general :/
    ClotplusMany 7 Replies
    • February 12, 2008
    • 08:18 PM
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  • I don't mean to scare or alarm you, but some hypercoagulable states can come from having a malignancy somewhere. I don't think you would be hypercoagulable for 5 years, though, if this was from a cancer. So, this is very unlikely, but might be worthy looking into if absolutely everything else has been ruled out. There are likely many, many other things they need to check before this, though. How many they have checked for, only they know. The Lyme test sounds like a good idea. As for "anxiety" causing your symptoms? No, I don't think anxiety would make your blood clot too fast. If you have any anxiety at all, it most likely is coming from being ill and undiagnosed.Sorry again you are going through this.
    Anonymous 42789 Replies
    • February 12, 2008
    • 10:25 PM
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  • So I went to the hemo. Dr today and he said it was going to take another 1 to 2 weeks to get the rest of the results in... but that my factor VIII was 30% lower than it should be. He said b/c of this even though I have a tendency to clot he does not want to give me blood thinners (says I could swing the other direction?). After peppering him with questions he agreed I could have a DVT and we not know it, finally after more questions he came up with the need for the need for a chest PE b/c of possible puliminary embolism and doppler on my legs. Doing those tomorrow. He said to call him 24 hrs later to over the results and he will call in 1 to 2 weeks with the lab results. He said the field is very unknown with the factore VIII that they might not ever be able to 'do' anything for me. He told me to talk to my GP about all this (who says to talk to the hemo. dr in return) and also wants me to go to a rheumatologist since they are more 'up' on immunodeficiency. He said if that does not work I need to go to UVA (which is a teaching hospital 1.5 hrs away). I don't think he understand daily my head is getting worse (even though I was VERY adamant about it). I asked him if the veins in my upper sinuses through my head, if they clotted would my head like this would it act like this 'yes'. But he doesn't 'think' i have a clot there. I'm at a loss. I really want someone to look at my head before I can't drive anymore :(
    ClotplusMany 7 Replies
    • February 13, 2008
    • 11:28 PM
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  • So I can administer this test myself (I know probably a very dumb question)?? I found an LLMD through lymenet who turns out is also a rheumatologist. I might go to her rather than the one the hemo. Dr suggested. She is 3 weeks out though :(
    ClotplusMany 7 Replies
    • February 14, 2008
    • 02:08 AM
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  • Okay so guess what?? Test came back positive for lyme! Dr. put me on Doxycycline, 100mg 2x a day for 3 weeks. I put myself on the waiting list for the LLMD I previously mentioned. Doppler test this morning showed superficial thrombophlebitus. So it explains a great deal of the symptoms but doesnt explain recurrant clotting (superficial) nor factor VIII levels being low (which seems the exact opposite of a clot issue). Nor the inhibitor found in the PTT test. Thank you everyone for your constant help on this, after this long finally having results and I can easily attribute it to this board! Thank you Blaze and Elke especially!!
    ClotplusMany 7 Replies
    • February 14, 2008
    • 05:12 PM
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