Got in a fight with the neuro, again!

[jumpinjiminy]

There is something about this guy, not sure what it is, that brings out the fight in me. Maybe because he's often pinning my symptoms or lack of them on emotional reactions rather than physiological processes.

I had to call my GP today who has started a trial of prednisone for the symptoms to see if it would help me feel better, which it did, and the neuro sx started to clear up along with the fever. But yesterday I had a lot of blurring vision and twitching in the legs and feet that resulted in painful muscles this morning in my thighs and hips - like I'd been out skiing all day or sumpin.

Anyway, my GP wasn't in and the doc on call doesn't know me. They won't touch neuro with a ten foot pole, especially undiagnosed, so he couldn't advise me whether or not to continue the taper or stay at the higher dose until full symptom control was reached.

They referred me to the neuro, who I insisted wasn't going to help. I've had much worse symptoms than this and he didn't even return my call until after I had to go to the urgent care center to be seen, then wrote off what I was experiencing (throat closing up - spasms, with headrushes).

So I had to go see him right away today, according to the doc on call. What did he do? He reamed me out for going on steroids in the first place without a diagnosis. I told him it was helping. He said it causes euphoria. I said I'm not euphoric, I have more energy and can think more clearly and function better.

To make a long story short, we argued about whether or not this was doing any good which I convinced him there are definite PHYSICAL symptoms that have gone away and are being controlled by the steroid, the fever is down, and these things cannot be written off as euphoria.

So now we're back to the spinal tap. He says I've been putting it off for a while now and acted like he wanted to do it a long time ago. Gee, had I known he thought it would show something (last I was told by him, he didn't think it would show anything so I decided against doing it) I would have done it along time ago.

Anyway - now I'm finally getting that spinal tap that probably should have been done during the huge flare months ago. Let's hope something shows up.

I told him under no circumstances am I going to end up in a nursing home at the age of 45 because my test results didn't have enough positives to start a treatment that could stop the process. Steroids were my only option, and they're working.

There could be a hundred antibodies that cause this, they may never find the one responsible. Why should a person have to accept inevitable brain damage when immune suppression can save you from that misery? I'm not accepting it. I told him so. I think he heard me this time. But I don't think he will change his position on treating with the prednisone.

I'm not going to take no for an answer.

[jazzgirl]

First, let me say that I'm glad you're feeling better. That's a GOOD sign.

Now, I don't know this neurologist, but I DO know MS and I'd like to clear some things up for you here. Steroids may help with an acute exacerbation of MS, but they don't influence anything long term with the disease. I've been diagnosed with MS for almost 32 years now and am in my early 50's. I've had over 20 3-day infusions of IV Solumedrol and all I've gotten from it is osteoporosis.

NONE of the current treatments (Avonex, Betaseron, Copaxone, Novantrone, Gilenya, Tysabri) will stop the progression of the disease. They're all only meant to slow it down....maybe.

I hope you get some answers soon, but I don't want you to think that answers are going to stop anything. They're still woefully unaware of how to do that when it comes to multiple sclerosis. . They're trying, but progress is slow.....

Good luck, and keep us posted as to how you're doing!

[Redwings]

Hi jumpinjiminy:
You're in a tough place. You have a neurologist who's dragging his feet on a diagnosis and won't treat you, and who you're now in a contentious doctor-patient relationship with. You have a GP who's sympathetic and trying to help but doesn't know how to treat you so he's just amateurishly dabbling with steroids. And somehow you and your GP both think you're exempt from the underlying principle of knocking the inflammation down first with an appropriately large dose of steroids and then finding what you need to manage symptoms. "Oh, it's just a mild flare" doesn't cut it. Working backwards by working up on a dose for symptom control might work, but is, again, dabbling.

If you mentioned in another post how much prednisone you're taking as part of your "extended course" of steroids, I missed it. But nothing else I've read in your posts indicates that your GP is following the procedures that specialists would be following in treating your case of suspected Hahimoto's encephalopathy.

I don't remember where I read it and can't for the life of me find the reference anymore, but I swear I read somewhere that a person getting an MRI or LP as part of a workup for Hashimoto's encephalopathy should NOT be on steroids at the time. And that makes sense, considering how steroid responsive the condition is said to be. Steroids could mask the inflammation and chemicals that would be helpful in making a diagnosis. (That's not necessarily true for MS, but we aren't talking about MS.) I'm sorry I can't find that reference, because if anybody needs solid guidance right now, it's you. So I'm sorry... I feel like I've failed you here.

Going to the Mayo Clinic without insurance coverage will cost you several thousand dollars by the time you figure in clinic fees, transportation, lodging and food. If Santa brings you, say 5 grand for Christmas, you're covered.

It seems that you really need to get away from your neuro and relieve your GP from trying to treat something he isn't qualified for. Have you looked into filing an appeal with your medical insurer to approve an evaluation outside your normal medical group? I was prepared to pay privately to go to Mayo, but my HMO finally gave me an outside referral to a university neurology clinic, where I was finally diagnosed correctly. (I don't have MS, and none of the in-house neurologists would look beyond the (mis)diagnosis, even though it was apparent that I don't.) That's why I ended up not having to go to Mayo, but I was prepared to, even though it would hurt financially. (Santa didn't bring me enough money the previous Christmas.)

If you can't afford to go to Mayo on your own, can you afford a visit to a (relatively) nearby university medical center? In an earlier post, you mentioned not being able to get a referral to a neuroummunologist. Could you see that doctor as a private-pay patient?

You're in a bad spot and it pains me to see you there. Can you afford to see any specialists outside your medical group? Are you willing to try a large-dose knockout treatment of steroids (IV or oral) before fooling around with trying to find an appropriate maintenance dose while you're working on a specialist referral? Can your GP consult with specialists at Mayo without you having to be seen there?

I've been in your position of having a rare condition (I have neuromyelitis optica) and having to go through the nightmare of not having anyone who was qualified to be treating me -- the very kind rheumatologist who prescribed meds without actually knowing what the problem was vs. neurologists and ophthalmologists who couldn't be bothered to look beyond the superficial -- and it seems there has to be a better way for you. You just can't get there from where you are.

[jumpinjiminy]

Hi Jazzgirl. Thank you for the input. I forgot to mention that I'm a limbolander and the MS specialist is pretty certain it's something else. He said after 20 years of symptoms off and on with no brain lesions, chances of it being MS are pretty slim.

There are indications this is autoimmune, chronic remitting low grade fever, symptoms go away when fever comes down, low complement, thyroid antibodies, along with several other autoimmune conditions that have accumulated over the years.

This is why we did the medrol trial (it was not the high doses through the IV).

[JoanFrances]

Sorry Juminjimmy

been in your shoes and it isn't fun

I had way over 10,000.00 in uncovered medical bill while having insurance trying to figure out what was wrong with me. I had all the classic sx (if anything is classic with MS)

For the past 5 yrs I haven't had insurance so now I can't afford to mess around.

I hope you get some answers soon Friend. Merry Christmas

[jumpinjiminy]

Thank you Joan. I don't have time to fool around either. If there is something out there than can help me feel better until the diagnosis day comes, why wait to find it and use it?

I'm not good with this watch and wait thing. Tinkering around looking for some elusive positive sign while things continue to go downhill is not acceptable for me. I can't do it.

I'm switching neuros after the tap. The other guy is in network anyway. This one isn't.

[kebsa]

I do understand your frustration, i was actually diagnosed with RRMS in 2004 with multiple lesion visible on my MRI's.

i have had 2 MS neurologists including my current one who is great! but he is in the private medical system and when i became ill with aspiration pneumonia due to swallowing problems a few weeks back there were no beds available in the private hospitals so i had to go to the public hospital (urgent care as you guys would say)

it was really hectic there and once they kne i had a private neuro they were not real interested - they did prove there were some major problems with swallowing that need further investigation but decided they would just baby sit until i could be transfer -

in the meantime the Neurology team, the physicians and the Gastroenterolgy teams all argued who would over see my care- after 4 days of being in the ED i was dumped to neuro- the 1st time the neuro saw me without any kind of exam, he said he had looked at computer copies of my scans that were taken in 2004 and said I did not have MS that they were micro vascular lesions - naturally i was surprised and asked what had caused my vision problems, bladder and bowel incontinence and various other problems all made worse by the hot weather - he said don't know but not MS-

i was stunned, i then asked about the aspiration pneumonia and he said if i was not going to listen to him i might as well just head straight for the PEG feed tube now. He then wrote a discharge summary to my usual Neuro that stays (a copy stay permanently in my notes at the public hospital) calling my dx in question and calling my highly resistive to the fact,

now usual neuro was not phased but felt it was not fair treatment of me, that it was label me as a problem patient if i have to return there again and he is confident of the DX but added i do have other medical problems that complicate the picture but the arrogant so and so at the public hospital had not stopped to do a full history

I was so angry! there will always be differences of opinions between Medicos but i just could not believe that one who saw me for 5 minutes felt i should trust his opinion more than 2 previous neuros who have cared for me for several years- then i get tagged as difficult

Doctors are humans and as such there is simple personality issues as well as medical diiferences of opinions to consider

good luck getting an answer


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