MS diagnosis delayed by 2 years due to obesity

P F writes:
My husband is fat. He was a fat baby, a fat child and now, at 5’8″ ranges between 280 and 320 lbs. So not just fat, but DEATHFAT! My husband was always very coordinated and graceful, quick and extremely strong. Even today, he can bench press 300lbs 10 times without straining at all. To the surprise of every doctor everywhere, he was always very healthy as well, with great cholesterol, low blood pressure, low heart rate and good blood sugar.

Until 5 years ago when my husband lost his colour vision. He could see, just not colours. After 4 hours at an ophthalmologist, a preliminary diagnosis was made: Multiple Sclerosis. (The first symptom is typically vision problems, though loss of colour vision alone is unusual.) He was referred to a neurologist who said “You should lose weight.” He ordered no tests and did not even mention MS. My husband was demoralized at yet another doctor calling him a fatty and his vision returned to normal, so he ignored the diagnosis and went on with life.

Then, 3 years ago, the stomach symptoms started. He couldn’t eat. My husband could keep down some liquid, but solids he threw right back up. (It turned out to be gastroparesis, essentially a paralysis of the stomach leading to an inability for food to move into the intestines. The food rots for a while, then the body ejects it, i.e., vomiting. It’s not uncommon with MS.) He went to his GP, who was delighted that my husband had lost 20 pounds. The fact that my husband was puking up every meal didn’t matter- he was losing weight!

Within 4 months, my husband had lost 120 lbs. He could no longer walk. His feet burned, he was losing feeling in his fingers and his teeth were a rotten mess from all the stomach acid. Doctor after doctor ignored the how and focused on how wonderful it was that my husband was losing his deathfat.

One night, I come home to find my husband passed out on the floor in a pool of blood. The constant vomiting had damaged his esophagus. The ER doctor was horrified. The burning feet? Neuropathy (permanent nerve damage) from vitamin deficiencies. Several of his teeth were abscessed. My husband was dying, and this was the first doctor to care. I cried tears of relief that someone actually cared.

The ER doctor ordered an MRI and a lumbar puncture (spinal tap). Because of my husband’s size, the LP had to be done with a flouroscope because they couldn’t feel his vertebrae well enough. The doctor doing the LP was angry at my husband for being fat. When he was told they didn’t have the right size needle, the one on the tray was too big, he used it anyway and my husband has had severe back problems since. (He never had them before.)

Turns out, my husband had MS all along. Weight is irrelevent to MS. There is no correlation between MS and weight. If anyone had cared to see past his weight, he could have avoided permanent nerve damage. His stomach still causes him huge problems, and we’re $5,000 into $15,000 of tooth repair. He’s in pain every day and struggles with everyday tasks. At least they didn’t kill him.

Thanks for listening.

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  1. Leonard B

     /  March 13, 2013

    I’m very sorry to hear about your husband, but there’s a couple of points that are unclear to me:

    You say he was referred to a neurologlist after having been diagnosed with MS – but the new doctor never mentioned MS during the evaluation. Didn’t your husband mention his MS diagnosis to the neurologlist? I know from experience that when patients are referred to other doctors the reasons may not be communicated properly as to why the referral was made in the first place. And, doctors aren’t psychic. It’s always up to the patient to be proactive in his or her own care. At what point did your husband speak up with any of these subsequent doctors and say “Doctor, can you conduct further tests to either verify or eliminate my diagnosis of MS? Or, can you run some additional tests to tell me just how severe my MS really is?”

    It almost sounds to me that the neurologist and subsequent doctors were under the impression that they were treating your husband solely for obesity. You also seem to indicated that your husband did exactly the same thing – he went into denial over his own diagnosis and pretended as if it was a misdiagnosis without asking for further analysis.

    Again, I’m truly sorry for what happened to your husband but there’s only so much the doctors can do if a patient chooses to ignore his own diagnosis.

    • vesta44

       /  March 13, 2013

      Leonard – P F doesn’t say if they asked the neurologist about an MS diagnosis, BUT, if they told him about the symptoms he was having, a recommendation to lose weight is NOT going to improve one’s vision. NOT looking for the true cause of the vision problems her husband was having is the doctor’s fault, NOT the patient’s fault because he may not have mentioned a possible diagnosis to the doctor (and since when have most doctors listened to fat patients about what’s wrong with them and not recommended weight loss?).
      When P F’s husband went to his doctor and told him he couldn’t keep food down, THAT alone should have told the doctor there was something wrong, and not had him happy that that the man was finally losing weight (rapid and unexplained weight loss is NEVER a good thing, neither is not being able to eat anything).
      It seems to me that most of these doctors who saw P F’s husband could only see his fat and the fact that he was losing weight – they couldn’t/wouldn’t see that there was something seriously wrong. Since when is it the patient’s responsibility to pass on possible diagnoses from one doctor to another? Especially when the patient is only told it’s possibly MS? Your comment is victim blaming and the only reason I’m letting it stand is because you need to be educated about victim blaming so you can quit it.

  2. JeninCanada

     /  March 13, 2013

    Dear PF, I’m so sorry that you and your husband have been through this. The road ahead is likely not going to get any easier either. Thank you for sharing your story.

  3. Elizabeth

     /  March 13, 2013

    I am fat, and I also have MS. My neurologist’s office has never said one word to me about my weight. What happened to your husband is absolutely criminal.

  4. Leonard B, a neurologist should ASSUME the patient is there for a neurological problem, NOT for weight loss. That is not a neurologist’s specialty.

    I understand the point you are making and also wondered if PF’s husband had pressed further about the possibility of MS, but regardless, this is still extremely poor medicine. You don’t just tell a patient to lose weight; if the patient is seeing a specialist, then you assume the patient has a problem related to that and you address what the patient is actually there for. In this case, a neurologist should assume there was a possible neurological problem and discuss the symptoms, the possibility of MS, and order tests to rule out other diagnoses. Medication possibilities should also have been discussed.

    The fact that none of this was done is classic size profiling. The doctor sees only the patient’s weight and focuses only on that as a “solution” to the problems, disregarding the possibility that the problems may have nothing at all to do with weight. Stop blaming the victim and acknowledge that substandard medicine was practiced here.

    Frankly, I’m most horrified that subsequent doctors ignored all the other symptoms (sudden unintentional weight loss, vomiting, neuropathy, difficulty walking) and focused only on the “progress” he made with weight loss. Talk about malpractice!

    PF, I’m so sorry for what you and your husband have endured.

    • Leonard B

       /  March 14, 2013

      I agree with you that a neurologist should ASSUME that a patient is seeing him for potential neurological problems, but I’m still not ready to rule out the possibility of miscommunication. This particular neurologist might have thought he was looking for a diagnosis of Hypothyroidism which he did not find. In my own experience, such miscommunication within medical networks happens far more frequently than should be expected – and it has nothing to do with “size profiling.”

      Although my weight has fluctuated up and down (plus or minus 70 pounds) over the years, I am usually considered to be somewhat overweight – but not one who is typically thought to be severely obese. For the past 10 years I’ve been getting my health care through my local Veterans Administration Medical Center. It’s actually a very good system with great doctors, nurses, and medical staff. I do, however, find that I need to be ever-vigilant in speaking out for my own care and treatment. Sometimes that means going against my own doctor’s recommendations when I know in my heart that what he or she is telling me isn’t quite right. It’s not that there’s something wrong with these people – it’s just that they’re human, like the rest of us, and they do work within a certain framework of rules and regulations.

      For example, testing is quite expensive. On occasion I have had to ask more than once for an X-ray and, when the X-ray revealed nothing serious, I had to plead and practically stomp my feet to take it to the next level – which was an MRI. In one classic case, once I did get the MRI a severe case of spinal stenosis requiring back surgery was finally revealed – something that a simple X-ray did not show. Situations like this occur all the time, whether being treated by the VA or out in the private sector where doctors need to get approvals either from insurance companies or Medicare to conduct further testing and analysis. If approvals are not given then many people don’t bother to get the testing done.

      On another occasion, having been diagnosed with PTSD from my experience in the military I started seeing a VA psychologist twice a month. After 8 months of seeing him I was not making much progress so I happened to ask what other options there might be to treat my PTSD symptoms – to which the doctor replied “But you don’t have PTSD.” At that point I directed him to his computer so that he could access my medical records. Sure enough, after just a few clicks on his keyboard he opened my file and saw my diagnosis of PTSD. I have no idea what this man thought he had been treating me for, but it was clear to me that he was not aware of my PTSD and that he never even bothered to read my file before beginning my treatment. Obviously this oversight had nothing to do with my weight. How’s that for “miscommunication”??

      Other times I have had diagnoses of new illnesses (COPD for example) which, once made, no one bothered to notify me about. It was only when I was being screened before surgery that a member of the medical staff told me “Oh, I see here that you have COPD.” What??? I’ve since learned that sometimes I must call and harass the medical staff after each and every test or exam in order to learn exactly what was discovered. Apparently, in the VA medical system no news is not necessarily good news – especially when it comes to health care.

      I’m sorry for such a long response, and I do feel very badly for P F and her husband. But, once again I have to say that these situations aren’t always a case of “fat profiling.” An initial diagnosis of MS was made in the case of P F’s husband and, just because it wasn’t mentioned again by doctors after it was first communicated, that didn’t make it go away. Doctors do have a huge responsibility when it comes to our health care but, ultimately, the bigger part of that responsibility lies within ourselves. Silence on our parts doesn’t make an illness go away – and it’s the squeaky wheel that gets the oil.

      • PF

         /  March 14, 2013

        At what point in your story did the neurologist refuse to give you tests until you lost weight?

        That doctor absolutely fat shamed my husband and refused care on the basis of his weight. I’m glad that’s never happened to you, but you’re not my husband, or anyone else on the planet other than yourself.

      • vesta44

         /  March 14, 2013

        Leonard – What part of “of course he mentioned MS.” do you not understand? What part of “The neurologist wouldn’t talk about MS, he only wanted to shame my husband for being fat. He told my husband to lose weight and only then would he do any tests.” do you not understand? It can’t get any plainer than that, and you are victim-blaming here, again. I will delete any more of your comments that continue in this vein. It’s not bad enough PF’s husband was mistreated, blamed, shamed, and ignored by doctors, now you’re piling on too. I won’t tolerate any more of this in this space. You have been warned, and this is your final warning.

  5. Fat Down Under

     /  March 14, 2013

    Leonard, I sort of understand some of where you’re coming from, but I can tell you from personal experience that there are a LOT of doctors out there who will not, under any circumstances, listen to their patient, or other health care professionals the patient has seen. They just will not. As they attended med school and have the credential to
    Rove it, they feel they are a better witness to your personal experience than you are, end of story.
    Asking, or even demanding to have tests performed does no good with a doctor like that – if that doctor doesn’t write up the order for certain tests, your only option is to not have the the tests and continue to suffer, or find another doctor. I don’t think I need to mention that seeking another doctor is not guaranteed to get you any better results. Plus, a lot of people can’t just keep looking for a doctor to listen and help – they don’t haven the time or the money resources to do this.
    Not to mention that it’s just further belittling and mortifying to be told over and over that there is absolutely nothing wrong with you outside of your unhealthy fat body (said to me, in so many words, by a new doctor whom I had to get quite aggressive with in demanding health care rather than diet and social beauty conformity advice……and no, I never did get any care. I realized I was fighting a losing battle and walked out. Also, I never paid for that “consult” either. I no longer hand over hard earned money for zilch.)

    These doctors, along with a vast portion of society, use a persons weight and size to discriminate, label and categorize a patient based on preconceived notions, sizeist/weightist attitudes and lackof empathy. I’m convinced that most doctors only get into medicine for the money and prestige, and not for their genuine concern for the human condition and health care.

    Sorry, I could go on about this all day. I just wanted to post a view in support of the patient who was essentially left for dead because of prejudice.

  6. PF

     /  March 14, 2013

    Leonard, of course he mentioned MS. MS is scary, MS disables and kills people. The neurologist wouldn’t talk about MS, he only wanted to shame my husband for being fat. He told my husband to lose weight and only then would he do any tests. (320 lbs is not too big for an MRI, a lumbar puncture or blood tests. He could have had them done.)

    But thanks for assuming my fatty fat husband is also fattystupid.

    • Leonard B

       /  March 14, 2013

      With all due respect, I never called your husband “fattystupid.” Indeed, if the neurologist was verbally shaming your husband and had refused to conduct further tests citing your husband’s weight, then the smart thing to do would be to report that doctor to the proper authorities and then demand to see another neurologist. This is especially true if your husband’s weight was not too large for proper MRI and other testing to be done. You did say, if I recall, that your husband had already had a definitive diagnosis of MS. Well, if the neurologist decided on his own to ignore that diagnosis and then turned your husband away for being too fat to deal with, then it sounds like you have a slam-dunk case of malpractice. I hope you pursue it!

      • PF

         /  March 14, 2013

        As a paralegal, allow me to explain the court system to you: it sucks and it’s biased towards the wealthy. Pursuing a malpractice claim is expensive and time consuming. The doctor, even if we won, and we wouldn’t win that case, wouldn’t be sanctioned at all. His insurance might go up a little bit. And, doctors all know each other. When you sue one doctor, every other doctor knows about it and wants nothing to do with you. No doctor, except for ER doctors, has to offer care. You can easily find yourself with no doctors at all to go to.

        Any other tacks you’d like to try, Leonard? You’ve already done “personal responsibility” “laziness” “you’re responsible for you” and “sue!”, just so you don’t repeat yourself.

        • As a practicing lawyer, I’ll partially agree with you. In the medical malpractice field, it’s not quite as biased against the patient as you think, but it would be hard to find a lawyer for a case like this with likely damages under $100,000. Med-mal contingency lawyers strongly prefer wrongful death cases to delayed diagnosis/pain cases.

          Cases like these almost make me want to start a med mal practice focusing on fat hate cases, but as an IP litigator, it’s way out of my expertise. I wonder if anyone knows of a firm or lawyer that does specialize in these kinds of cases, though…

  7. I’m completely disgusted by your husband’s treatment. I’m female, shorter, and fatter than your husband and last year had an LP with zero problems and zero fat shaming, so it’s possible to do an LP on a fat patient without doing damage.

    Doctors get away with treating fat patients badly because any thing they do wrong they can blame on the patient’s fatness and society just nods along. It’s shameful of the doctor and society.

    PF’s story is a horrific example of what fat patients endure every day when they seek medical help and sadly is not an exception.

  8. Reblogged this on Fractured Ideals and commented:
    Every day, overweight patients are being misdiagnosed, completely ignored by their physicians, shamed, and told to lose weight to solve completely unrelated health concerns. This needs to stop.

  9. roctapusjones

     /  May 2, 2013

    If my math is correct, your husband was 5’8″ and 180 pounds when he got the lumbar puncture in the ED, and they had to do it under fluoroscopy? That strikes me as extremely unusual, unless he has some sort of spinal deformity and/or carries 100% of his body fat in the small of his back. Do you know why they had to use a fluoroscope?

  10. I have to say, I do find some of this story suspect. It is completely not normal and not ok to lose 120 pounds in 4 months. Even a patient who had undergone bariatric surgery would not be expected to lose that much weight. Such weight loss, in a year, could be considered starvation. I just can’t imagine that many doctors would ignore that. I don’t understand why you wouldn’t have gone to the ER many, many times before this. If you have the insurance or the option to go to an opthamologist for losing color vision (something that would not cause me to go to the expense of seeing a doctor, since I have no insurance), then I have to assume you have the ability to go to several doctors. So, I just wonder if this is exaggerated or if the patient wasn’t being entirely proactive.

    And while I agree that it is the doctor’s job to diagnose, etc.; it is also up to every individual to find the doctors that will do their job. Fat or not, plenty of people experience bad doctoring, especially in the mental health field. A doctor-patient relationship is something that can take time to develop and I definitely know of plenty of people who change doctors to find a better fit (including a 9-months pregnant woman who changed birthing centers at the last minute for the best experience). I find it hard to fully believe this post, because the vomiting and weight loss warranted an ER visit well before a near-death experience.

    • vesta44

       /  May 3, 2013

      Short Girl – I approved your comment in order to reply to you. First of all, of course it isn’t normal or okay to lose 120 lobs in 4 months, but it is possible. According to my doctors at the University of Minnesota Medical Center, I lost 70 lbs in the week after my weight loss surgery, so 120 lbs in 4 months would be nothing (and my best friend, who died from having two weight loss surgeries, lost 240 lbs in less than a year). Second, even if one has insurance, it isn’t all that easy to keep changing doctors until you find one that’s a good fit – been there done that. I have Medicare and TriCare and it’s difficult to find doctors who take Medicare, especially if you live in a small town, and I’m two hours from the Twin Cities, so I can’t afford to drive that far every time I need to see a doctor. I’m stuck with doctors who refuse to see past my fat to diagnose the true cause of my back/hip/muscle problems, so I have to deal with the severe pain I have every hour of every day because nothing they will prescribe for pain really helps.
      Last of all, you can find it hard to believe this post, but it’s not your experience, or the experience of someone close to you, so calling these people liars, and saying that he wasn’t being proactive in taking care of his health isn’t something you can say at all. All you know is what was stated in the post – you weren’t there, you didn’t see what they did in addition to what was written about, you didn’t hear what was said to them by doctors. All you have to go on is your own experience, which isn’t the experience of the letter writer or her husband. So I advise you to have a bit more sympathy for fat people who are treated like shit by the medical establishment, it happens all the time, and it does kill people, even when they do their utmost trying to get adequate care.

  11. This story made me want to cry. Parts of it made me want to find the doctors involved and commit bodily harm. And some of the comments made me feel even worse. I am grateful for the rebuttals offered here to the victim-blaming comments.

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