Rose-I am so bummed you removed your original post, I only had a moment to read it before running out and I thought, wow, this woman is soooo informed about her health, etc...I was going to read it more closely upon returning and now it's gone. And so sad, my memory is so awful I can't remember what you wrote!
But why do you think I have a diagnosis...? I'm just in the differential part (PD vs MND vs muscular disorder)? That means they don't know yet, right? And I am suspecting that even those possibles will change as results come in, afterall neuro decided on those after only 15 minutes with me. So I am not putting much stock in any of it at this point.
Olly, I had this stretch of cramping that was so debilitating that I begged GP for something and he offered more motrin. Yikes, how much do you have to take before it's an overdose? Begged to neuro and she gave me painkiller, not any of the medicines I have heard many on forum talk about for cramps (like Baclofen). Nurse said neuro didn't want to give me anything different until she figured out more about what was going on. It's ok though, I enjoy painkillers, especially with a glass of wine:-D
Lydia
LOL, sorry about that, I think what made me think you had a diagnosis already is I went over and looked at your public profile, and it said you were diagnosed.... BTW, a nice glass of wine and a Valium, and then we don't care so much what's wrong,
.... moving on, here is what I wrote about earlier.
When I first started realizing I was sick I had extreme fatigue, I thought I was jet lagged because at the time I flew as an international flight attendant, and was working on the wrong side of the clock. I had awful muscle cramps. They would start while I was walking back and forth in the aisle on the plane, mostly in my feet, but then after I'd finally get in the bed, I'd be wakened with just horrible charlie horses in my thighs, calves, sometimes elsewhere in the body. My fingers were kind of stiff, they'd stick in position sometimes.
I started noticing dry mouth, already had dry eye, then began having a weird sensation in my chest with breathing after exercise and and rest. Right about then my voice started sounding weak, mostly to others, they'd comment on the phone mainly, asking if they woke me (and believe me, working weird hours, my always response to that question is a defensive "no no, I wasn't sleeping" regardless if I was or not.) ~ I digress ~ back to what led to prednisone.... I was treated for asthma (re: the breathing) simple blood tests originally "ruled out" Sjögren's syndrome, until later when it became a primary susupect.
When it didn't seem to be asthma, and my voice continued to worsen, I was sent to a rheumatologist, who guessed at autoimmune, re-ran all the blood labs (I've had them about 6 times now) and put me on Mobic, which is an anti-inflammatory for a trial. I did not get better. So, a lip biopsy was done to examine a salivary gland. That came back with "minimal focal inflammation, not diagnostic of Sjögren's) ~ but~ I was getting sicker, so my doctor decided to try treating it as Sjögren's anyway. I was started on Plaquenil (a quinine) and prednisone. Well, the muscle cramps that had been such a bother, that NO doctor seemed to care about, went away, but everything else was the same, or worsening.
My rheumatoligist tinkered with the dosages of both medications, but other than sometimes not being as fatigued, nothing improved. Eventually he added Methotrexate to my medications. It is another immunosuppressant, and is sometimes used to treat myasthenia gravis.
Months passed, and my ENT doctor just couldn't see anything wrong with my vocal cords, he thought maybe they looked thin, but said I needed someone with a higher level of expertise than he could offer. Due to a variety of reasons, it took about 3.5 months for me to get in to that kind of specialist, a laryngologist.
She looked at my vocal cords, recognized that they were atrophied, and attributed my weak voice to them being bowed because of the atrophy. She and a neurologist performed an EMG of my vocal cords, and that was when the first tangible explanation was found. Even though there was a pattern of denervation/reinervation, no one brought up motor neuron disease to me as a possibility yet.
A couple more months passed, more symptoms started cropping up. mostly having to do with my tongue. I started having problems swallowing some, and having facial cramps.
This was when the neurologist that did my vocal cord EMG and my regular rheumatologist, both decided (separately) to send me to the same rheumatologist for a consult. This guy is a guru in the field. He's up in years to still be practicing medicine too. He spent a long time with me, and said he felt that if Sjögren's had indeed invaded my nervous system, that my other problems with dryness would be much more severe first. He was not at all convinced that I even had Sjögren's.
He felt that we had reached the place where trying all of these medications were at the tipping point of causing more potential harm than good. He put me on a high dosage of prednisone for two weeks. He felt that if what was at the root of my illness was inflammatory in nature, that it would have to have some sort of impact on it in that length of time. If I got better in a measurable way, (not feeling better with less fatigue) but if my voice, or one of the other problems improved, then we could feel it was caused by inflammation, and he and my other rheumatologist would start me on a variation of chemotherapy. If I had no benefit from the prednisone, then he felt that an inflammatory cause could be ruled out, and he said he did not feel that I had a treatable condition if that were the case.
I did not get better from the prednisone. I did have some damage to the retina of my left eye from it as a souvenir though.
So, my regular rheumatologist, the neurologist, and and he, all concurred that we weren't dealing with inflammatory autoimmunity.
My regular rheumatologist wanted me to go to Johns Hopkins. He felt that I was already seeing top notch doctors in the New York area, and that none of them (including himself) were helping me any.
Originally I went in through the rheumatology department at Hopkins, I think because it was what my referring doctor's specialty was, and from there, that doctor at Hopkins referred me to a neuromuscular doctor there.
She concurred with everyone else, that I should have had a response to the prednisone if I had an inflammatory condition, and that the lip biopsy was not enough evidence to base a Sjögren's diagnosis on, and none of my blood work had supported it either.
Sorry this is so long, but I figured if I was going to answer it again, I might as well get it all in. It usually helps to get the whole background. The bottom line is that if an anti inflammatory such as ibuprofen or prednisone will improve symptoms, then its a treatable condition.
Hope this helps
