I just wanna cry

Good day everyone. I could just curl up into a ball and cry. Again I went to a new GP because of my flare in symptoms. I have to see psychiatry tomorrow and follow up with neuropsychiatry before they will look into my symptoms any further. I have completed a round of steroids and I remain on neurontin for the tingling sensations. My blood work from March 2014 indicated that I did not have APS, however a previous diagnosis was made in 2007 by my reproductive specialist. I recently had an MRI of my lumbar which was clear of spinal cord compression. Yet I continue to suffer from headaches, foot drop in my left foot with claudication pain and neuropathy and poor circulation, speech difficulty, blurred/double vision, abdominal spasms, pain behind my left eye, chronic back pain. I was once cleared for conversion disorder but the neurologist said those psychiatrists didn't have enough information to clear me. My left foot is in severe pain but no one will address this. I feel like throwing in the towel and just bear with the pains. Sorry so lengthy.

18 Replies

  • HI again, you are not the first to be in this situation and you will not be the last, it is possible to go in and out of testing, ie having been positive you can then be negative and vice versa. Sero negativity also exists, you will see the pinned post on the forum put there by popular request do to the volume of members actually asking for this. You are going to have to out of your area to the nearest possible person who can give you a fresh appraisal, taking all your letters and notes with you. Often wrongly patients are fobbed off with either psychiatrists or neurologists or both. Please read through this list, and contact some of the USA names and find from them who they know nearest to you. Some people even leave their country to get help. apsaction.org/

    Also hopefully members in the USA can help with other ideas, Feel free to print out any of the papers on Seronegativity and take them along. Push hard and don't attend any appointments without taking your most articulate/educated friend or relative, this is important.


  • Thank you! This is just so frustrating.

  • I know, I understand, my own family all of us have been through similar, as have countless people on here. MaryF

  • Hi again,

    I agree completely with Mary!

    I have seen 4 neurologists as an example. Do not give up. We believe you and understand you!! It is a fight actually.


  • I hear your frustration. It took me 4 years to get a diagnosis of sero negative Hughes. I too was referred to a psychiatrist. I refused to go. Earlier this year I was diagnosed with hashimoto's disease , catastrophic Hughes , fibro myalgia ,lupus ,a form of Parkinson ,and my blood is clotting profusely. This year I have had 3 clots on my lung .A mini stroke. My total dvts since 2007 is 34. For years I was turned away and luckily I have survived.

    My prognosis is unknown as heparin infusions and clexane are no longer working. SO DON'T GIVE UP

  • Oh my land! I'm sorry you had to go through so much. I've gone to one psychiatrist but now they want me to see a neuropsychiatrist. I think they are grasping at straws because they are uneducated on the effect APS can have.

  • i too understand, i was diagnosed with aps in france, but no one could understand my pain so i was sent to a psychiatrist, fortunately i had already seen one in the uk who had diagnosed chronic pain, so took the report with me an he agreed with it, but because i have not had a clot or anything find it difficult to be taken seriously, i see a rheumy who knows about aps but everytime i see him he just asks if i have had a clot......i just keep taking the pain killers along with plaquenil and aspirin. x

  • What scares me the most is that I'm not on any meds other than neurontin and Robaxin. I've had a TIA. No other clots. It's a fight during a flare up. Take care of yourself please!

  • Hang in there. Peruse mrdical history and you will note that I ime and time again the mainstream medical community has used psychiatric issues as their stand in for a " they didn't teach me this in med school" diagnosis. As Dr Hughes has said, we're not failing the tests, the tests are failing us. Stand up tall. You will get through this.


  • Thank you for the encouragement. I see a new neurologist today to address the foot drop. Hopefully he can help!

  • Where in the US do you live? Are you taking Coumadin?

  • I live in Ohio. No I'm on no therapies just meds for pain. I was on heparin and lovenox during pregnancy and fragmin postnatal.

  • I was diagnosed by John Winkelmann who practises out of Northgate Ky, which is as you probably know, across the river fron Cinn.

    Good luck!

  • What happened when you had your TIA? Could they diagnose it?


  • I had the diagnosis 7 years ago and the stroke team told me that the APS could have caused it. They gave no further recommendations. I wasn't very knowledgeable about Hughes syndrome until this year after the TIA.

  • Did you have the TIA after you had stoped the Fragmin postnatal? (Forget to ask this)

    Kerstin again

  • No my daughter had just turned 2 when I had the TIA. I had small symptoms that I kinda brushed off. Then the symptoms hit me like a brick!

  • When you had the TIA did you take Fragmin then? How could they say it was a TIA and what symtoms did you have when you had your TIA?


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