been Dx'd for 2 yrs...now I'm in limbo

[Zacksmomi]

I just want to cry.  I got the easiest fastest dx I think I have ever heard of on hear.  I had an numb arm, c-spine MRI showed lesion...brain MRI lit up like an xmas tree with Dawson's fingers...and now I don't even know who my neuro is any more.

I had a great neuro for 13 months but the DMD's were not doing anything as far as my condition.  Of course I was lucky enough to have a neuro who understands that disease progression is not entirely based on an MRI.  

He decided it was time to try Tysabri.  So last June he sent me to UCSF to check if I could go in the program and I got in right away.  I saw my regular neuro again in July and his attitude was like...well they have control of your meds now so what do you want me to do for you??  HHHMMMM you scheduled a follow up appt, so I came.

So he did reschedule me for 6 months out anyway.  I went to UCSF to get a brain MRI and check up on Jan 5th.  Brain MRI looks like no changes...I am doing great on the Tysabri.  Never mind that I am dropping weight at an unhealthy rate, I am sure it is unrelated because it has not been documented in their study. Oh and I am getting worse mentally and physically...but I'm great otherwise.

I think I am in a flare or whatever this is I am going through now, and I had that 6 month follow up with my regular neuro.  He said he agreed he thinks I am in a flare and he can do an MRI but there is no point because my MRIs have NEVER shown any enhanced lesions and I have had several during times we think I am in a flare.  But he can't give me treatment because he  is not my Primary Neuro anymore UCSF Dr is.  I said "UCSF is not treating me like a patient, they treat me like a lab rat."  He told me to talk to them about my flare.

So I called UCSF wed because I was supposed to have Tysabri Thurs.  I had to cancel the Tysabri treatment because it is 45 mi away and the min I say I have new sx's they won't give me the treatment.

The nurse from UCSF called me back today and said the neuro wants an MRI of my brain to see if I am in a flare before deciding if we should continue treatment, or do steroids.   I went nuts.  Looookkkkk at my flippin file...Over 2 years I have deteriorated and deteriorated and my MRIs show no change.  Enhancing lesions have never shown up on my MRIs and I really don't think my ins is interested in paying for 2 brain MRIs in 1 month.

I also told her that my future ex neuro said that the only way to see what is going on is to put me in a 7tesla machine.  The nurse said she would relay my thoughts to the Dr then get back to me.  I asked what the heck I am supposed to do in the meantime.  I am suffering here and no one is doing anything for me.  She replied that she was sorry but she is just the correspondant and she will have to call me back after she talks to the Dr.  Well now at 434 on Fri afternoon, I am sure the call is coming any sec :)

I don't know what's going on with me, I can't get anyone to take me seriously, and I am really afraid this is SPMS at this point.  I just can't tell whats a flare, what is normal, and what is just my Tysabri wearing off.  I can tell you this tho, if this is my norm after the Tysabri wears off, then it is definitely getting worse every month.

My MRIs look good tho...NO CHANGES so gee I guess I am going great.

I will be attending a candle light vigil for Marijane Lewis a 5 year old who was brutally murdered by her Mother this week.  Please send your prayers for her.  She was such a precious little girl born to the wrong parents. (Gee wonder why my sx's are going off)

Thanks for listening
D

[meg321]

I am sorry you are having these issues.  This disease is so complicated...I never know if it is my MS or another problem I have.  I just mostly feel like crap most of the time and it is so frustrating.

I depend a lot on my primary Dr. locally, I go to UCSF also.  They are very busy and understaffed now so its hard to reach them, I email my MS Dr there but don'y always get anything back but at least its on record and if it is important or an MS issue she will get back to me.

I also email my primary Doc here,m he always gets back to me right away.  It is my health and I am sure i drive him nuts but I think he likes me. I am almost the only one who emails him I was told.  But he also finally got me on the lexapro for the anxiety, I am not sure why I kept refusing it.

I am rambling again, I seem to forget why I here at some point.

Sometime we should make our appts at the same time at UCSF and could meet each other.

hugs, meg

[COBOB]

My partner hold dual citizenship in the US and UK.  We visit on a regular basis.  Lucky for me, that my US insurence allows me to see a private consultant if I have a problem in the UK.  Dealing with the NHS might be difficult.  

We have discussed me working in the UK more than once, (I'd be working in Hursley) but there are some complications with  how I;d get my Copaxone, etc.  It is still something we are considering, since I try NOT to let MS control our lives.  

Thanks for the clarification,

Bob

[Zacksmomi]

I hear your frustration.  I think over here getting treatment depends a lot on your insurance.  There are tons of people in every country that are treated like hypochondriacs and it is a horrible feeling.  I actually was treated like one for 17 years before MS took my right arm completely and I was "lucky" enough to have c-spine lesions.  If they hadn't been looking for something totally different I would still be in limbo myself.  

Shell- I really feel better about the weight loss after reading what you said.  I can tell there has been muscle atrophy in my thighs and glutes for sure and my husband is on me saying I don't eat enough calories.  I have this cool app on my phone where I can just scan the label of what I eat and it totals up the calories, or I can just type in what I eat...now I just need to actually use it lol!!!

Everyone- I am working hard today on getting treatment for this current situation.  Flare or not, something has to be decided today and I won't quit until I get help.  
Thanks for all your support
D

[FoxC]

Sorry for that.

I'm female, 30 and live in England. I was (finally) diagnosed with CFS/ME a year ago after many trips back and forth to my doctor with various symptoms. I have deteriorated still since my CFS/ME diag, and the nurse who's care I'm under is concerned about the increase of my neurological symtpoms, she's hoping to get me an appointment with a neurologist for tests however my GP (general practitioner) is very reluctant to consider that this is even necessary.

My obtuse comments are based on the reluctance of doctors in England to continue to search for a diagnosis and therefore to use diagnostic tools available or even to refer their patients to the necessary consultants. Here in England the myriad of symptoms found in CFS/ME and in MS seem to cause GPs to feel more comfortable diagnosing hypochondria rather than accepting that the patient is genuinely not well.

That's all. Nothing against America at all, I think you've got it made when it comes to these things. I'm just wishing it was as straightforward to get an MRI or LP, or even to just see a neurologist, over here in ENgland.

[COBOB]

Not sure what the comment about lack of treatment is the US means.  There seems to be a global issue with getting a diagnosis.  Neurologists seem to get confused and are reluctant to diagnose MS.   Once RRMS is diagnosed, the posts I have seem indicate that treatment seems to come in the US, Canada, the UK, AUS and NZ.   I have seen several posts that the main issue seems to be diagnosis, not treatment.

Since FoxC hasn't told us much information about himself/herself like age or location, I have no way to understand the obtuse comments being made.

Bob

[FoxC]

Are you in the US? If yes then you should be pleased that at least you get treatment.

[sllowe]

Thank god you are getting rid of that regular neuro of yours, D. I can not disagree more w/his treatment of you - good riddens.

Having said that, they absolutely can know what is going on w/out having used a 7 tesla. That's absurd. The contrast agent will pick up on enhancements if your w/in the window of time.  As we know that time is short, so it's a crap shoot.

We've talked about this so much, but I have to mention it again. Existing damage can wreak havoc on you - daily. Flairs are not are only problem - though with the relapsing remitting label, most people think this.

D - Your weakness can be a direct result of the weight loss. And, if you are inactive from feeling badly you'll drop weight like mad if your not eating much - especially muscle tone. I know all too well that once you get into the low weights and you miss one meal, you drop 5 pretty much overnight.

I hope it's not the Tysabri, but you can test it. Increase your calories throughout the day for two weeks and see where you are at the end. I found out my loss was not Rebif, that it was indeed me. I didn't feel good, I didn't eat much, and was inactive physically and I got weak and skinny - too skinny. I was convinced in my head that gaining would make me feel even worse.

This perdicament rots for sure. Getting dx'd quickly gives you no experience where MS is concerned. I was dx'd quick too. Early on I could not tell the difference between MS symptoms and some Rebif symptoms.

You may have to seperate each issue for now in order to move on w/each step. For example, don't worry about the weight loss, just keep some grub in you. Don't worry about the imagining, just get it.  

Hate that you have to go through this :(  just trying to pass along some things that helped me - hope they help you too.
ttys,
Shell

[Sumanadevii]

I had told my neuro I read that Tysabri gave me an 88% chance of not getting new lesions next to the 33% chance I am getting with Rebif.  She states those numbers are not true. The Tysabri number is closer to 45%.  Again, it is a big gamble for not much of an increase.  

This is why I am watching the board to see how others are reacting to it.  It is a big risk in my mind without seeing a real difference.  

[cainer]

  i would be sure and have them take care of your symptoms.  ms  or not,  once thats better
  well it would sure help. i have heard alot about tysabri  - well it scares me, my opionion
hugs tick

[Zacksmomi]

Whoops hit post...

My neuro told me the numbers he heard are more like 500:1 if u are JC positive and 1000:1 if u are negative. He says the numbers he looks at are including Europe and the tests here only look at their own studies.  I have to call tysabri help line to get that straight

I will certainly be looking more at tysabri myself.  I will post my reasoning for choosing to go with it in a new thread hopefully tomorrow.

[Zacksmomi]

I should probably start a new post, but the numbers I was told by my neuro regarding risks with tysabri, and the risk UCSF told me from completely different planets.

I just don't know that to believe. My Dr at UCSF made me feel like tysabri had a risk of like 50,000:1 in the first year of developing PML if u are positive for the JC virus and that if I was negative I didn't need to worry about the IC virus.

My local neuro attended an seminar with tysabri scientists and that those nubers are waaayyyy to high.  That the risk for PML is higher than the risk for gettin MS isn the first place based on the numbers he was saying. His

[Sumanadevii]

Because of exactly what is happening to you, I have fears of going to Tysabri.  I first would never want to leave my neuro and would have to be assured she would remain top dogl.  Next, I have talked to many of the nurses at the infusion center where I get my steroid treatments.  Tysabri is given there.  The nurses have stated most do not see much of a difference...Of course, most haven't been on it for a full year either.  

Thing is, if things are getting worse, we have to do something but what is that something?  I wish someone would come flying on the board all excited about how wonderful Tysabri is and how it has helped SOOOO much with pain level...but I am not hearing that anywhere.  Just seems like a new med....nothing spectacular.

[Zacksmomi]

Big hugs and thanks.  I do have a good GP who is treating my sx's with baclofen, lyrica, etc.  I am close to maxed out on dosage and just keep adding more med.

I appreciate all the support. I just have to remember to keep pushing until I find the right answers. I am going to call my GP tomorrow and see if I need to up my zoloft. That is the only med I am at minimum dosage on.

It's funny but when I tell each different Dr the dosage of zoloft  I'm on they all have said "good then we have plenty of room to increase that one"  
Very encouraging lol.

Thanks again everyone

[janereed]

I am so sorry to hear you are going through all of this...I understand your frustration!!  I guess, in the end, this disease is frustrating for all involved!  I do understand being made to feel like a lab rat, or in some of my cases a "nut case".  All I know is that a good doc is so hard to find, and the ones that are good are either booked or don't take your insurance or....yeah the list goes on!!  Keep your head up, as hard as that can be, and remember you are not alone in this struggle!

[rendean]

Dear D,

My MRIs remain unchanged after 5 years and NEVER enhance, even during a flare. But, remember, so many lesions are invisible to the current  techiniques used , hence the request for a T7 for you.

However, someone should be treating your physical symptoms and pain, including depression  which is a known flare of MS. My neuro treat my symptoms NOT my MRI. Tysabri may not be working fpor you, although most reports I read do comment on it's ability to  stop relapses.

But, consider what is going on in your life that is stressful and consider  if you have any infection at all to trigger a major relapse that even Tysabri cannot ovrercome. The FIRST question out of my neuro's mouth if I have severe symptoms is there ANY change in my voiding etc, or urinary tract.

Just a few thoughts. Not really an answer but know we are here for you!!

Ren

[Lulu54]

D- it may not seem like it but I'm guessing those doctors would really like to have answers for you, too.  This disease can be a MyStery to eveyrone involved.

I'm so sorry that you are left with this feeling of frustation and even more for the pain and worry you are living with.  

So sorry that I have no answers- just sending some gentle hugsy your way.  - Lulu

[Zacksmomi]

I apologize...I do still have my dx, I should have clarified.   I am not getting any help tho...I feel like they "dont understand my MS" and I am getting more confused everyday.  Is my MS making me feel the way I do or is there more going on.  I go to Dr after Dr with no answers.

I feel like no one wants to tell me what's really going on with me or they just can't figure out. I should not have used the word limbo as I know those still looking for some kind of dx at all are suffering much more than me.

Thanks for caring

[daisy.girl]

sorry you are going through all of this.....

I don't understand though.....who undiagnosed you??