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Avatar universal

Frustrated with Specialist...

I don't even know where to begin.  I went into the TOUCH Program thru UCSF in order to do treatments of Tysabri.  For those that don't know, Tysabri is still being closely monitored and you have to be involved in the TOUCH Program and visit the Dr every 3 months for them to monitor your progress for the first year. (so I was told)

So that means a 250 mi trip one way every 3 months and if I have a flare I have to go in sooner and be examined before I can have another treatment.  I started my first treatment in July and immediately got a sinus a infection.  I blame it on myself and over doing it, but it sent me into a flare and I had to travel to UCSF to get told that I was prob in a flare but we were gonna just continue treatment.  That visit I saw a female Dr and she came in with total knowledge of my file and understanding of my symptoms.

I had to travel back 2 months later for my TOUCH Program follow up.  I apparently was assigned a male Dr for my treating physician.  He was cool but it was obvious he was strictly interested in how the Tysabri was effecting my MS and not so much about me overall. He was still nice enough but not quite the same as the female.

I got a severe cold after my treatment this last December and it went away then cam back in full force the day I had my treatment 4 weeks later.  The specialist actually wrote a note to my GP that I am complaining of a chronic cough...I don't believe that is the same thing.

I went back at the beginning of this month for an MRI of the brain and a follow up appt.  I have known visible c-spine lesions and brain stem lesions and most likely have 2 t-spine lesions that have not shown up on images.  I asked him why they chose to do only the brain.  His response was that MRIs are very expensive and we are only looking for changes in brain activity.

I explained to him that my brain MRI has not changed in 2 years since I was dx'd and I have had like 4 or 5 MRIs done.  He said "Good well then if this one changes we will know there is a prob with the Tysabri"  Well it didn't change and he basically informed me that means the Tysabri is working great and I am doing well.  

He began asking me about my sx's and I explained that I had no "new" issues, but that all the old ones seem to bother me more and more.  I said for example I have bladder spasms/pelvic pain that I have been to the hospital for 4 times in my life prior to my MS dx and the hospitals and Drs had NO answer for these pains.  

The specialist actually said to me "well these problems seem to PRE-DATE your MS and I think a regular urologist and well woman Dr can help u resolve these issues"

I have had more and more issues with my walking and am having pain in my hip and quad muscles.  He told me those issues don't seem MS related and I need to see an orthopedic for xrays.  I told him I have been to 2 different orthos and both xrayed my hips.  Both commented that they felt my pain was muscle related from MS issues.  He said "did they treat you for bursitis".  I said one did give me a shot in my right hip.  He asked if it helped.  I said "It helped the bursitis I developed for a little bit"

His answer was "Well there you go then"  WHERE DO I GO??? I questioned his reasoning and he simply moved on to the next topic.  

I have lost 25-30 unexplained lbs since I started Tysabri.  I am not complaining AT ALL, but I have not been exercising due to the pain in my legs so this weight was not lost by my effort.  He showed concern but claimed he has never heard of Tysabri doing this to any patient and to follow up with my GP.  

I felt VERY much like a lab study and not an MS patient.  

I had an appt with my GP two days later and he about flipped his lid.  He went through the history report sent to him from UCSF and pointed out to me issues dating back to when I was 15.  I assured him I would request to change to the female Dr and I since have done so.  I see her in April.

So then the male specialist calls me last night with Great News...I tested negative for the JC virus which means my odds of getting PML are almost zero.  Then he goes on to explain that he spoke with his superior about my issues with the bladder and pelvic and the specialist agrees that Tysabri did not cause that...GEE THANKS GENIUS!!!

He asked me if I had a well woman Dr I could see.  I informed him I just saw one last week.  He asked what her opinion of my pelvic/bladder issues are and I told him "she said she can see know problems other than MS that could be causing these issues and I am otherwise healthy"  The Dr actually said "HUH!" that's it just HUH!

He went on to point out that he noticed I requested a new Dr and he is actually great with that because he just took a new position at a different hospital.   OH great so he was just gonna leave me hanging??? I am glad the timing of his idiocy worked out on my side then cuz had he left I would have never gotten in with the other Dr as all his patients would be clammering to get to her.

At the end of the call he said how great it was to be my Dr and he is glad I am doing so well with Tysabri.  I sound like a busy mom and Tysabri should help me keep it up.  He made me out to sound like a soccer mom who runs around all day.  I can't even work and am on my second appeal from SSD.  I really am not excited about them getting a report from him that I am doing great and am just a super happy run around stay at home mom.

we are financially struggling and believe me I would much rather be working and bringing in a paycheck than being a stay at home mom with NO money.  I am going to call the patient coordinator at UCSF today and express my feelings as well as my SSD atty.  If this guy messes up my appeal I am going to go crazy.  

I see my regular neuro tomorrow so today I am trying to gather a list of questions for him and my brain is soo not cooperating.  

OK I think my vent is over.  If you can think of any specific questions you would want to ask your regular neuro whom you trust in a situation like mine, please feel free to help me make my list.

Thanks to all who are out there listening
D


8 Responses
338416 tn?1420045702
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.
Avatar universal
hi   d,

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

1225331 tn?1333365769
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.
-Kelly
1318483 tn?1318347182

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,
Addi
645390 tn?1338555377
D,

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,

(((Hugs))),
Michelle
987762 tn?1331027953
COMMUNITY LEADER
Hey D,

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!

Hugs.........JJ

738075 tn?1330575844
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.

Take Care,
Lisa
Avatar universal
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
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