At a loss, multiple consultations still no answer...any idea?

I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough, I get stuck with a PA who was completely unhelpful after two visits, so I canceled the third visit, asked to see a MD, and was refused. Very sad as I look at Mayo and John Hopkins and they have a webpage on Sjogren’s and do a team approach for treatment.

So, I found the Rheumatology Dept. Director at the only other big hospital in the region. I wrote her and her assistant got back to me the next day. Said to get a referral and they’d definitely see me. So, I I’ve got a request into my neurologist.

He also had referred me months ago to a neuromuscular doctor, who I finally get to see in two weeks, so I’m a little more hopeful!

I did start taking R-ALA/S-ALA, ALCAR, and complete Omegas, with GLA, and B vitamins. And, I take 300 mg Gabapentin at night to help me sleep.I also don’t do refined sugar, white flour, etc. and I walk a lot. My numbness has continued to worsen, as have my feet, hands, and muscles. But I don’t have the sharp nerve pains as much.

I’m glad your managing your symptoms somewhat. Perhaps I’ll have better results as I keep my self-treatment up longer. Anything else natural you’d recommend?

@athenalee. Hi Athena. So very glad you stuck to your guns and were such a good advocate for yourself! Seeing a neurologist and a neuromuscular doctor would be so important for your conditions. Way to go!
I've been self-advocating too, on behalf of my IBS and daily longterm diarrhea. I've been imploring my doctor for months to stop a certain daily rapid motility prescription medication (Constella) which I took together with Lax-a-Day and Metamucil every morning. I was SURE it was the cause of the daily, very weakening diarrhea. She finally agreed to stop the RX, and lo and behold, no diarrhea ever since! However, she did start me on Dicetel after a three-day wait. I took the first pill as directed, with a full glass of water and with food. Within 3 hours I was throwing up violently many times. with a scarey show of blood at about the 4th time. My Care Aid stayed with me for a while but once she had to leave for her other duties, even more violent upchucking ensued. She summoned the nurse, who said if it continued, I needed to go by ambulance to the hospital E.R. It started again with a vengeance and an ambulance took me to the hospital, completely dehydrated and still extremely nauseated. Lab work, x-rays I.V. fluids as well as anti-nausea I.V.s x 2.
Finally sent home by ambulance at 2:30 a.m.!
And folks, I'm not saying either of these meds would be bad for YOU. I'm just extremely sensitive to prescription meds and this is solely my own reaction. Feeling better now, but still weak and wimpy. Determined to get my stamina back and be outdoors walking my mile some day soon! Laurie

Oh, Laurie, @artist01. This is just awful! I’m so glad your health aide was there to help you! When will medicines ever learn to just be nice to us and just do their job! Stay in bed today, please

@athenalee. Hi Athena. So very glad you stuck to your guns and were such a good advocate for yourself! Seeing a neurologist and a neuromuscular doctor would be so important for your conditions. Way to go!
I've been self-advocating too, on behalf of my IBS and daily longterm diarrhea. I've been imploring my doctor for months to stop a certain daily rapid motility prescription medication (Constella) which I took together with Lax-a-Day and Metamucil every morning. I was SURE it was the cause of the daily, very weakening diarrhea. She finally agreed to stop the RX, and lo and behold, no diarrhea ever since! However, she did start me on Dicetel after a three-day wait. I took the first pill as directed, with a full glass of water and with food. Within 3 hours I was throwing up violently many times. with a scarey show of blood at about the 4th time. My Care Aid stayed with me for a while but once she had to leave for her other duties, even more violent upchucking ensued. She summoned the nurse, who said if it continued, I needed to go by ambulance to the hospital E.R. It started again with a vengeance and an ambulance took me to the hospital, completely dehydrated and still extremely nauseated. Lab work, x-rays I.V. fluids as well as anti-nausea I.V.s x 2.
Finally sent home by ambulance at 2:30 a.m.!
And folks, I'm not saying either of these meds would be bad for YOU. I'm just extremely sensitive to prescription meds and this is solely my own reaction. Feeling better now, but still weak and wimpy. Determined to get my stamina back and be outdoors walking my mile some day soon! Laurie

Oh Laurie, your strength snd positivity in adversity is amazing. I can’t believe all your struggle with IBS and ongoing diarrhea was due to your meds! And, then the doctor gives you another med that makes you vomit! Perhaps a natural approach for IBS could be possible?

I’m glad you’re feeling a little better. Please rest to regain your strength and continue to improve! I’ve refused to take medications in the past, at least until my provider explained the necessity, side effects, and alternatives. Remember, it’s your body and you know it best. Our doctors may be experts, but they’re certainly not infallible, as we both well know! So, it’s your right to question and discuss all treatment options.

@athenalee Hi Athena. Thankyou for your message. And don't worry, I sure do know my body and am a VERY strong advocate for myself! It wasn't the meds " causing " the IBS. I certainly have IBS, and for years. It's just that these two meds made it so much worse. I have an awful reaction to most prescription drugs, and I'm on my natural products again, as I was before all this trouble started with medication! The natural way is always my preference.
I hope you're doing well these days. Warmest regards to you. Laurie

Fantastic advice as always, thank you Elizabeth. I hope you and your son are well.

That's the thing, I did receive a letter shortly after my MRI. However, with the neurology department being so small I thought it was odd that they'd schedule an appointment as when nothing is found they'll release you back to your GP. So I called the hospital and discovered what I did.

It's not unusual to wait such lengthy periods, my friend was recently diagnosed with MS and he waited 8 weeks for his first follow up and another 34 months after his initial MRI until he was officially diagnosed. Unless it is life threatening they aren't quick to act and unfortunately the current situation has only worsened this.

I think it's time to head down to mayo, I'll get the results from the hospital this week and schedule and initial consultation to get the wheels in motion, all the best.