Good News

[Victoria]

Hi everyone! My neurologist who is 2 hours from me (but well worth the drive) thinks I have hypokalemic periodic paralysis, and I know this can be due to RTA. Sad thing is that I was hospitalized twice for it recently and the neurologist there (a resident at a large teaching facility) refused to call in a nephrologist while I was hospitalized. A week or so after being discharged from the hospital I got a letter from him referring me to psychiatry, despite having 5-6 low potassium readings plus the paralysis.

I promptly canceled the psych appointment and made an appt. w/ my personal neurologist. She is very educated and is also my greatest advocate! She said Sjogren's would also explain the neuropathy I have. She also said the pancreatitis, etc. are suspicious for SJS. I love her to pieces and believe there will be a final diagnosis soon. She told me it is very important to find a unifying reason for all of my diagnoses, and believes it's probably SJS.

She referred me to a rheumatologist and I'll be seeing him/her at the end of August. All prayers are welcome!

BTW, the resident neuro kept testing my blood sugar while I was hospitalized. I just happened to have a follow-up appt. w/ my endocrinologist and he told me I'm diabetic due to the damage to my pancreas. He wanted to put me on insulin, but decided not to do that right away because I'm very thin. I'm testing blood sugar 4 x a day and taking glucophage 3 x a day. The diabetes is the outcome of medical neglect. I complained about horrific upper abdominal pain for more than a decade and was referred to psych for that as well.

Anyway, I absolutely refuse to give up and I'm trying to stay hopeful for a diagnosis!

Hugs,
Victoria

[susanep]

Victoria I am so glad your not giving up and that your wonderful neuro is eager to help you find out all you can to get the treatment you deserve. It will happen. I will be praying for you. You take care.

susanep

[quiger]

Victoria,

It pays to be persistant and the right doctor can make all the difference when you have a chronic illness. It's a shame when a doctor suggests psych treatment and are dissmissive when they should be focusing on helping find the cause of the symptoms.

It's good to hear you have such a good doctor. Hopefully you will get a diagnoses soon. Good luck.

quiger

[Pooh]

Victoria,
I am so glad to hear you are fighting these insensitive, ignorant doctors that take the easy way out and just send their "I don't know's" (the doctor's, not us) to psychiatrists.  Maybe we should all become psychiatrists, sure looks like they are the ones with all the clients.

I went through the same thing for over 30 yrs.  Then I found that ONE doctor that said "You have Sjogren's Syndrome, you are not psycho."  Of course now, like you, other parts of my body are beginning to be affected by the Sjs.  Maybe if we had all been dx'd earlier, we wouldn't be so ill now.   

Take care dear, and congratulations on that great doctor you have.

Hugs, Pooh

[Sjenny]

Victoria:

Good for you for refusing to give up - you are in my prayers for us both!

My GP offered to refer me to a psychiatrist too.  How ridiculous.  I asked him if the psychiatrist was going to "talk me into having more saliva". 

I firmly believe if we keep searching we will find the answers.

Best Regards,
Sue

[eyeamdry]

Victoria, I also have a long drive to my rheumatologist and she's worth it.  Although their office is often helter-skelter and has some ditty receptionists, the doc is top notch.  Lucy

[salsen]

Tell your young intern he should try picking up a book and reading the symptoms of SJS that go past dry lips and mouth.  Sounds like he needs a psych consultation for his all knowing ego.  I will gladly step up for you and testify that neuropathy is a symptom of SJS.  Hysterical symptoms are a reality but shouldn't that be the very last resort conclusion not the first?

[irish]

Victoria, Welcome to the club of autoimune people who are pretty much considered "mental cases" until some sharp doc comes along and believes our story. I am so glad that you have finally had these issues isolated and the pieces are falling into place. Your neurologist is worth her weight in gold.

By the way, why don't you ask that your doctors notes about your RTA and pancreas etc be sent to the NUTTY doctor said it was all in your head. Might be an education for him and he might learn something in spite of himself. It takes years much of the time but it is wonderful when the diagnosis is made. Irish

[Victoria]

Thanks everyone! I've always wondered why some docs can't put their egos aside and just say, "I don't know." Too many of them deem us mentally ill. Unfortunately, those medical records follow us for the rest of our lives. I don't know how I can still be hopeful after all these years, but I am.

Hope you're all hanging in there today,
Victoria

[Sandra]

"Talk me into haveing more saliva" that's a good one, My gp had me so mad I asked to see a phychiatrist just to prove him wrong so maybe he would then listen to me...but he wouldn't send the referal!
So great to hear your news Victoria. I have been reading posts that are very encouraging about the medical world beginning to understand sjorgren's. Dr birnbaum on the neuro page was is a breath of fresh air too.
Just having sombody listen to us means so much. good for you Victoria. Sandra