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Thread: Spinal Tap Results - Long Rant

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    Angry Spinal Tap Results - Long Rant

    I saw the neuro today, and of course, the results were - "everything is normal". I know that's a good thing, but it is so frustrating to always have lab tests come back normal when I know that there is something wrong. The docs just look at their test results and declare me healthy. They seem to think that I'm a hypochondriac, which I'm NOT!

    For those who don't know me, here goes....
    In 2007, I saw my first rheumy in Texas. He said that the only thing that I was positive for was "something called Sjogren's", but that it wasn't something that needed to be treated. Anyone here who has SJS or does any research on it will know that is wrong! He said that we would just have to keep doing blood work every six months until something was positive.

    My PCP, who was the greatest, wasn't happy with this and got me on a list to see another rheumy. After six months, I saw her and loved her. She did much, much more extensive testing, and she was the one who told me that I have MCTD. I was mildly positive for Sjogren's. Lupus, RA and Psoriatic arthritis. She was also suspicious that my Meniere's was actually Autoimmune Inner Ear disorder and thought that my Spasmodic Dysphonia was probably related, too. She said that with all of this cumulatively, I was obviously in pain and started treatment immediately. She started me on Plaquenil, and then added Methotrexate six months later.

    Unfortunately, we've moved to California for three years. I'm seeing the reputed "best rheumy on the Monterey peninsula", but she seems a bit unsure of what to do with me. She doesn't seem very approving of my taking the MTX, but she does renew the prescription when I insist. Dr. P wanted me to have blood work every six weeks while taking MTX, and she had an in-house lab for doing it. The new one just requests lab work every six months, and she seemed more concerned that I get my cholesterol checked on the next lab than anything to do with the MTX.

    The rheumy sent me to a neuro that she considers to be good to check up on my numb toes, foot drop and spasticity and weakness in my legs. He ran a few blood tests and an MRI, seemed very put-out that I didn't have MS, and sent me to an "expert" in San Francisco. The expert was also baffled, and suggested a spinal tap. I had that a couple of weeks ago. I just saw the neuro today (for the last time!). Of course, the test was totally Normal!

    This neuro will not listen when I tried to tell him that these things are all possibly related to the Sjogren's or another of the AI diseases related to MCTD. He considers SJS to be "only" dry eyes and dry mouth and very easily treatable. I mentioned that Polymyositis is one of the AI diseases related to MCTD, and that my neuropathy, foot drop and weak muscles in my legs matched it. He dismissed the idea. BTW, my ANA is 1:32 (speckled), but the SSA went from pos to neg, so he doubts that I even have SJS, even though the SJS clinic in SF did find that my lip biopsy had a focus score of >1.2, which is POSITIVE for SJS. (I'm thinking that the SSA went neg because the MTX is doing its job!)

    So, when I asked this guy "why are my toes blue and numb and my legs so weak that I'm afraid to drive very far, since I'm often not sure how much pressure I'm putting on the brakes or the accelerator?" His answer was that it didn't seem to be anything that he could treat, and that I should just compensate by keeping a close eye on my speedometer when driving.

    Thanks to info that Iíve gathered while researching SJS, I've figured out on my own that I have Interstitial Cystitis. I've mentioned my frequent trips to the restroom for years, but I've never gotten any attention paid to it. I can even pinpoint when it began. When my Mom-in-law was dying in the fall of 2006, my hubby was in Fla taking care of her, and I was teaching and under a lot of stress, I had a UTI that had me shivering in class with chills and fever and peeing blood. It was soon after Mom's death that my AI issues started really showing up and the IC symptoms were there, but I didn't realize what was going on.

    As an example, when I went to the commissary two days ago - I went to the restroom before leaving the house, drove 5 mins, parked and stopped at the RR in the store. I then shopped for an hour, left my cart, and went to the RR again. I finished my shopping and checked out less than an hour later, drove 5 mins. to the house and had to make a bee-line for the RR when I got there. I've had a few "accidents" on the couch when I have a very sudden urge to go to the RR, but my spastic leg keeps pulling me back onto the couch. I know that several of you can relate to this, and it seems to be related to SJS and other AI diseases, but how can I convince these docs?

    So, that's my extra-long rant. My neuro was worthless, and my rheumy is very sweet, but not sure of what to do with me. I truly feel that I know more about my condition than the docs do. I'm sure that there are some better docs in SF, so I'm thinking that I might need to start traveling there for all of my care. I was pretty spoiled living about five minutes away from Dr. Pineda's office in SA.
    Hugs,
    Marla

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    Marla,

    I am sorry, that you have to go through this BS, over and over again.
    Just because some of these so called doctors, specialists are not good at their job,
    we have to suffer more and longer than neccesary.
    I have read, that some people who suffer from MS, are never 100% diagnosed,
    because the diagnosis is very hard to come by.
    It is so frustrating, but very common for us who suffer, to get the run around and
    getting the label of being a hypocondriac.
    I can feel your frustration, all I can give you is a BIG HUG.
    Hopefully one day, we can all have a doctor that cares about us and not his bank account. Somebody who will go the extra mile to find out, what ailes us.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Oh Marla, your frustration is palpable, which is totally understandable.

    I would consider seeing Dr. Carteron for a consult and get her take on the situation since you've gotten absolutely nowhere with the supposed doctors you've seen thus far in CA.

    Please don't give up. Trust your instincts. None of your symptoms are normal.as you know frm from the SjS conference, SjS is absolutely more than just dry eyes and dry mouth. Remember all of those nice summaries you wrote and posted for us Sjoggies and Lupies? Well, it may be time to consult with the doctors who spoke at the conference. Perhaps you could send your records and a nice letter with a plea for help?

    I feel your frustration and want so much for you to get some answers. Let me know if there's anything I can do to help.

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    Marla,

    I was really worried that you would end up with an MS diagnosis. I am very happy to hear that has not happened. However, I know the frustration of not having answers. I think you really summed it up in your last couple of lines- You obviously know more about your condition than the doc's do, and you will probably need to travel to SF to find better doctors and specialists. You are not a hypochondriac. We all know the meaning of the word. But I think Webster's should add a secondary meaning to the dictionary-

    Hypochondriac- A pseudo-diagnosis made by incompetent and/or intelllectually lazy medical professionals when faced with a patient who has a difficult to diagnose condition.

    Your Neurologist's lack of knowledge about Sjogrens is alarming. Then he tells you to basically to "Take two looks at the speedometer, and call me in the morning." in response to your questions about foot numbness. What a clown. I'd fire him and find a new Neuro ASAP.

    I've heard you many times tell people here to trust their instincts, trust what their body is telling them, and stick to their guns in the face of less than helpful Doctors. I'm going to give you that same advice. You know you are on the right track, and you have a substantial knowledge and understanding of a variety of autoimmune disorders. You obviously know more about Sjogrens than this Neuro. You should have asked him how many Sjogrens conferences he's been to.

    Trust yourself, and stick to your guns. Try to find a new neuro and rheumo who are more capable of listening to you, and who will treat the Doctor-Patient relationship as a two way street with respect for your knowledge, and you'll find the answers and the course of treatment that you need.

    Rob

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    I am so sorry to hear about all the frustrations with your doctors and when we know something is wrong and arew sent away with a pat on the head and no answers we become angry and discouraged. But there are good doctors out there who see the problems and treat it and the others should be reported to the ama. Hope that everything is going to get better and that is why we are here for each other to vent. I also went to a neurologist for the first time and he told e all the problems with my eyes and headaches and balance are from migraines which are different from when i was younger. He put me on something which is helping and now he wants to check me for myastenia gravis. Good luck Bonita

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    Oh Marla,
    (((((((((Hugs))))))))))))

    Like Rob, I'm glad it's not MS. Keep counting the days till you're back in SA.

    I'm looking for a new endo. I'm having issues with the current one's staff.
    You should start shopping for a neuro too. It can't wait till you get back. There's always someone out there that cares; they're just hard to find.

    Buck up, you will survive, onward and upward!!!
    Nonna

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    Marla,

    I want to sit there with you and hold your hand and scream. These so called "medical professionals" are such a joke sometimes! I think it's horrible we have to educate them so often and so much on areas they are supposed to specialize in. It's frustrating and annoying and disheartening to know that you know more about your medical conditions than your doctors do. Scarey stuff that. Don't give up the fight for the answer (and the cure). I am in your spot right now where the discouragement is keeping me from pushing forward, but please don't end up in my spot where you are stuck and disillusioned about finding a new path. You know your body better than any one of those so called specialists and I have faith that somewhere near you is at least one good doctor willing to listen to more than a page of numbers. (((HUGS)))
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Hypochondriac- A pseudo-diagnosis made by incompetent and/or intelllectually lazy medical professionals when faced with a patient who has a difficult to diagnose condition.
    Rob; I absolutely love that definition. Especially because it is so absolutely true!!

    Marla; I think that you should make cards out of that quote and hand them out to every doctor who has the nerve to tell you that you are a hypochondriac (or who refuses to believe you or provide you with appropriate treatment). After handing them the card, you could tell them that you refuse to allow them to dismiss you in this manner and that you DEMAND that they treat your symptoms appropriately IN SPITE OF WHAT THEY THINK OR BELIEVE!! No one knows your body but you and they are supposed to listen to you and take what you say into consideration (along with lab results).
    As you said, you know more about your illness and its treatments than the doctors do. Since your rheumy is a "Sweetheart", but baffled, then you can educate her by telling her what symptoms you want her to treat and what treatments you want her to prescribe. Tell her that you are going to handle your health care this way until she gets up to speed on your conditions and until she understands that you are not making anything up- regardless of what the lab tests say. You are 100% correct in thinking that the MTX is probably the cause of your normal lab results and your doctor should be educated about this also.
    I wish that you did not have to be going through all of this again and I do hope that you can either whip your rheumy into submission or find a rheumy who is in line with you.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Marla, I feel for you... very frustrating. I don't have a solution, other than to keep looking for a good doc. I've been to a few prima donnas, one saying "I don't know what you've got, but it's not RA.", another said "You exhibit all the symptoms of SLE, but you're a man, and you can't have lupus."... Now, if they were regular joes like me, OK, but they're "educated" people! They just don't deal well with people, and maybe should have chosen a research path instead of an interaction path of their careers...

    Have they done MRIs of your brain stem & at least the lumbar of your back? Maybe you have degenerative disk disease compounding things there?...

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    Thanks, everyone
    Sometimes we all just have "one of those days". I also love Rob's new definition for hypochondriac. We all know it, way too well.
    As BonusMom suggested, she and I both know a great rheumy in SF who spoke at the Sjogren's conference. I've been trying to stay local with most of my docs, but I might need to try to see her.
    As luck would have it, I received a call today from a nurse at AccordantCare, which is a personal healthcare support system that is a service of our insurance. Amazingly, she was quite knowledgeable about Sjogren's, Lupus, SD, and just about anything else that I brought up - yeah! When I told her about my suspicions about IC, she told me to make an appointment with a urologist soon. She thinks I'm right, but she wants to make sure that Lupus Nephritis is ruled out.
    I was really amazed at this service, and it was just what I needed after my experience with that neuro.
    Between all of you, my friends, and her encouragement, I'm feeling better about this again - thanks!
    Besides, I've got to get ready for next week - my 11 year old grandson is flying out from SA all by himself to see Grandma and Grandpa. I've got to gear up for kid food, Animal Planet, Disney movies and lots of little boy activities out here on the coast for the next two weeks!! I can't wait! I've been missing my young sidekick!
    Hugs to all,
    Marla

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