Of course you're a lab study - unfortunately a Tysabri TOUCH study isn't going to give you the kind of neurological care that you're needing. And it sounds like the people you've been seeing don't know much about MS, which is unfortunate.
That the study excludes spine MRIs is also unfortunate - you'd think that they would include that information. But I can understand why. They're assembling data about Tysabri, and it's easier to compare apples to apples (brain MRI to brain MRI.)
Speaking personally I have been having more and more trouble with pain, stiffness, spasms - all stuff related to my spinal lesions. So yes, it is the MS.
I would go ahead and just tell the neurologist your list of old symptoms that have gotten worse, and the new symptoms, if there are any. I'd also tell him about the weight loss, but if I were you, I'd talk to my regular GP and get a blood test. Maybe hyperthyroid? Maybe something else - but let him/her take a look at you.
it is certainlly frusurating for you!
If you don't mind, i will send a private message too.
Is this female UCSF doc a neuro? a touch doctor?
I ended up taking into my own hand to find a doctor who is touch affiliat ed that is willing to worrk with my doctor (200mi) so I was transfered. I have no plans to leave my doctor for this new one. He is just doing what i hired him for , to be my touch perscriber. I will see hiim only for touch sake. Thankfully everyone iis onboard about it all.
so look for a message I will send.
take care, amo
I'm sure it feels better to vent. And, yes, we are listening. :-)
And I thought my 2 hour drive to see my neuro was bad! 250 miles sounds awful, especially if you're in the middle of a flare! I can kind of see their point of them not wanting you to get PML though.
I never did understand why neuro's constantly want to order brain MRIs, when you have known lesions in your c-spine and t-spine, too. I've had an increase in symptoms - weakness, spasticity, bladder issues and they ordered a brain MRI. What about my spinal and the lesions in my spine? Nope, especially the t-spine. The last time I had that MRI'd was 1 1/2 yrs ago and I had to beg for that one. I can definitely see what you're saying.
Hang in there. Maybe the female doctor that you're switching back to can help.
Hey there, D-
I know that you have been struggling for some time trying to find the right doctors. I feel your frustration and understand. I don't have any advise for you (sorry!!) but I wanted you to know that I heard you loud and clear! And I hope this woman doctor listens. Why is it that doctors don't listen??
On another note, can you explain your pelvic pain? This is something new for me with my last exacerbation. I am just wondering if it is similar to yours as the ER doc I saw for it looked at me as if I was crazy...
Hugs to you,
AHH, what a visit. I am so sorry you are dealing with "nincompoops". I actually have no idea how to spell that, but it was the 1s word that came to mind.
I am glad you came to vent, as I am listening as well as others, and am giving you an ear and shoulder to lean on. What a mess. Plus, having to drive so far for treatment must be so frustrating.
I do hope this will not change anything with SSDI. I wouldn't think it would, but I am glad you will be looking into that. It saw sound like the neuro is talking to you as a Tysabri pt. and not a MS patient, or acting like he has any patience to "listen" to patients.
I am sorry you are going through all this,
Gee I so get your need to vent, it sounded like you were on a lemingings assembly line, whats your number type of environment, I was actually uncomfortable for you. I dont know if its just me but the way Tysabri is being monitored sounded flawed, well maybe not if the only thing they are looking for is PML and not what i may naively expect, which is monitoring Tysabri to see if its slowing down your MS or not.
The other thing thats standing out is that they are not making it easy for you, talk about added stress, I hope your normal neuro is doing a better job of looking after YOU!
Wow! What a waste of 500 miles and all that energy that went into the traveling and lousy meeting! Sheesh!
I can't say I'm totally impressed with the folks at UCSF, either. Thankfully, my general neuro listens, and I was getting my tysabri infusions locally.
I hope you feel better soon, and find answers to that pelvic pain. I get skin lesions and some joint pain with Tysabri, but that's about all. Ibuprofen helped with the joint pain.
Thank u so much for your support. I think I confused some people with the 3 month visits. My tysabri is infused every 4 weeks via IV at a cancer care center 45 mi away. The every 3 months visit is to follow up with the Dr.
You guys are right I totally am just a study. I was excited at first to get accepted into UCSF, but tomorrow the first thing I am gonna ask my neuro if there is a TOUCH Program more in the 45 mi range. My excitement to get accepted up at UCSF was not all it was cracked up to be OBVIOUSLY!!!
We had a very serious tragedy here in our little town today that hit close to home so I havnt even started my list for the neuro tomorrow. Hope I don't fall asleep too soon :)
You are all so helpful and amazing
Thanks a ton