Just to catch you up !!

[candy158]

Hi guys, thought I would let you know what I just heard from the MS Clinic ....... since my MRI did not LIGHT UP with new activity , they have decided NOT to give me any DMD at all, and said we will now treat systematically and looks more like the Secondary Progressive Phase, ( which is what I was always told anyways) .. so, I hope that they will keep up with me in the clinic though, especially since I seem to be flying by the seat of my pants.  LOL

So, I guess it is good news, and I will see if there is anything else that I can do with Secondary Progressive MS, or is it always just treated my symptons now, since the damage has been done over the last number of years.

I hope if someone has something to add, please chime in here, cause I'm not sure if I'm happy, or not !!!

Is this normal??

Candy

[karryon55]

Hi Candy,

My mum had grade 4 Rosacea many years ago. Did the dermatologist tell you what grade your at?

The worst grade is 4 and my mum had large puss filled spots across her nose and cheeks. She had to go on a long course of oral antibiotics and special creams. They also recommended she wash her face with a collaidal oatmeal product like Aveeno.

It's not a nice thing to have and it can get severe without the correct treatment. I have had Rosacea most of my life but it's only ever been the basic flushing and red cheeks which has never progressed. I believe it can be hereditory as well but there are no guarantees that you will have the severity as your mum say.

I hope that this works for you and have everything crossed for you.

Hugs,

Karry.

[4happygnomes]

Egads!  So sorry you are getting such the run around...sure makes you wonder what the "MD" stands for some days!  =0

Hope this Rx provides the relief you are looking for!

Karen

[candy158]

wow, quite a week.  My appt. with the dermatologist went .  Went well, hmmmmm I don't know.  At the beginning , they took tests and came back with Lupus, then the rheumatologist said, go to the dermatologist ..... he then said, of , it is Excema .... here is some cream, it was awful , and burned like crazy ..... did not help either.  Then yesterday went again, and this time saw the real Dr. not her locomb and she said Roseasea .... gave me a prescription for another cream, and we will see if it works.  I don't get it, Are  there NO Competent Dr.'s out there !!!!!


so incredibly  frustrated ... !!!

Candy

[candy158]

thanks JJ, wow, so much information.... !!!  

((HUGS))
Candy

[supermum_ms]

Hey babe, HUGS!

This is actually my third attempt to comment but i'm still confounded by the SPMS explanation of "since my MRI did not LIGHT UP with new activity , they have decided NOT to give me any DMD at all"

It would really only make sense IF..... not only did you have a couple of 'years' worth MRI's not 'catching' any NEW demyelination lesions ADDITIONALLY the 2+years worth of MRI's were all exactly the same with zero changes and indisputably stable AND in those 2+years you hadn't developed ANY new clinical signs AND over those 2+years you had without question, actually stopped experiencing the RR pattern and transitioned to the slower continual worsening as is expected in SPMS!

If that matches your MRI, clinical and historical evidence then SPMS would unfortunately have to be very possible but even if SPMS is the case, there are the additional issues of if the health system your under actually covers treating SPMS with DMD's or if it's just this neuro clinic's policy, and or by accepting the SPMS transition status you are then enforced to accept symptom management and what that actually means....

Information:

"Because the transition from a relapsing-remitting course to a more progressive one is a gradual process, the physician will not be able to tell exactly when it is happening. If a person’s symptoms are worsening, the challenge for the doctor is to determine whether:

The worsening is left over from the last relapse (in other words, permanent but stable damage that remains after the inflammatory attack has ended) — which would mean that the person is experiencing an RRMS disease course; or

The disease is continuing to worsen even though the person is no longer experiencing inflammatory relapses — which would mean that the person has transitioned to a SPMS disease course."

http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS/Diagnosing-Secondary-Progressive-MS

http://www.makingsenseofmsresearch.org.au/pdf/interferons-for-secondary-progressive-ms.pdf

http://www.wheelchairkamikaze.com/2013/01/a-potentially-effective-treatment-for.html

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0060855/

http://www.medpagetoday.com/MeetingCoverage/CMSC-ACTRIMS/46146

What i found extremely consistent was actually the lack of general consensus in establishing RRMS transition guidelines for SPMS but there is a huge black hole with DMD research not being able to establish beneficial outcomes in SPMS. One of the major issues being the research measures of the reduction of relapses and active demyelination.......hmmmmmm isn't that the entire point of their transition into SPMS in the first place, so how could they establish a decrease in something that ain't suppose to be happening in the first place?

There seems to be the anecdotal suggestion from neurologist and patients that the category a progressive MSer is placed, has a lot to do with passively circumventing the health system and insurance guidelines or limits for them to be able to or continue to prescribe DMD's. The neurologist own personal concerns about patient impressions of abandonment, and patient choice to keep trying etc

It's possible there is still some level of wiggle room, I believe because of the issues of establishing SPMS, your DMD history etc that it would be beneficial to you to seek an independent opinion on exactly what DMD might still be beneficial to you and additional if you have in fact transitioned into SPMS yet......

HUGS...........JJ        

[candy158]

Thanks Karry, ((HUGS)) to you too.  I'm not to sure what I am going to do now.  I'm just trying to get out of this despression over all of this.  The sun is shining now, and I am trying to vask in it and let go.

Will talk to them again soon, and going in to see my GP will help, and the dermatologist appt. is on Monday, so will let you know what they say.

xoxo
Candy

[karryon55]

I guess I've learnt the difference between a good Neuro & a bad Neuro in regards to what they write down. It was suggested recently when I was in a training hospital that I have SPMS which made me cross because they spent a whole 5 mins with me and labelled me with that.

"My Neuro" has not categorised me yet and I've assumed I'm RRMS until told differently. I don't think my Neuro would put SPMS in writing if he thought there were drugs available to me under RRMS. As it is I'm lucky to get Rituximab from having RA....if you can call that lucky lol.

Have they just spoken to you over the phone or is this in your notes? I honestly would be trying one of the other Neuro's avail at the clinic now as they may be more open to finding the right treatment for you.

I can imagine why you have mixed emotions right now. I'm sorry this Neuro hasn't spent the time or energy on a person who deserves their care.

(((Hugs)))

Karry.

[candy158]

Thank you guys, I am so mixed up you can just imagine.  I was not a candidate for Tysabri as my JVC was .94 which meant I was not a good person for that treatment.  Then they say that if there is no ACTIVE lesions then like Corrie said, the plan in BC will not cover any DMD's when activity isn't there.  Or that is what I was told on Tuesday.  

I remember a few years ago, I saw a Neuro that specialized in MS and was from UBC ( University of BC) , and he recommended the "mitraxatrone"  "sp" and gave us a good talk on it, and said that you are only allowed 10 in a lifetime, and many people get 5 treatments and wait for the last 5 till later.  I can't seem to get through to the Neuro in our MS clinic, but the older Neuro has since retired, but it should still be in my file, I would think.

A few people have mentioned Rixatub "sp" and they don't seem to have anything positive about that one either.

I was told that I have an appt. in July to see my Neuro and that we can re-discuss this situation.  So, what the heck do you do ?  

Originally, when we were going through all this dx'd stuff, I re-read some reports on the many Neuro's that I saw in the beginning, cause no one seemed to have a clue.  There were notes that said " I think she is in the secondary progressive phase of this disease" ..... I asked many times while trying all the other drugs , Copaxone, Avonex, Aubagio, and they constantly said RRMS , when I asked for clarification, they ignored me.  So, was that to have the government pay for it, or what, I'm puzzled by all of this.

ANyways, some more info on my life .... trying not to get down, but I'm sick of all of this ...

Trying to get a positive spin on this,
Candy

[Corriel]

Hi! I am a little disappointed that your medical team would want you to stop DMD just because of SPMS.

I don't know how it works outside of Canada but where I live (I don't know if it is the same as your province Candy) an "official" SPMS DX usually means that they will no longer cover DMD's under the provincial prescription drug plan which means it is not likely a private insurance company will cover a DMD either.

Even if I was SPMS, I am not sure my neuro would officially diagnose me for that very reason.

I have a lot of mixed thoughts/emotions on this one so I can only imagine what you are going through.

Gentle hugs my friend,

Corrie

[immisceo]

I was diagnosed with RRMS. But like Kyle, when I convert I will be treating with DMDs, trial drugs, or off-label. Getting given the shoulder-shrug from professionals when it comes to treating SPMS is just not good enough anymore.

[kwarendorf]

Hi Candy -

My initial, and current, diagnosis is SPMS. From the day I was diagnosed we have been treating my MS agressively. For the better part of the first 2 years I was getting Tysabri. There were no new lesions.

Then Tysabri stopped working. There were no new clinical manifestations, but the Fetuin A levels in my CSF went up. This was an indication of disease activity, which meant that Tysabri was no longer doing the job.

I switched to rituxan. I've been on it for about 18 months and there have been no relapses or obvious clinical signs of disease activity.

The choice is yours, but there are plenty of us out there that treat our SPMS with DMD's.

Kyle

[HVAC]

The truth is by the time many people are diagnosed they are secondary progressive. You could still say I want to be on a DMD anyway. Mine was so late in diagnosis I did copaxone for a year and then dropped it. All though I am PPMS I change very slowly. It is like my MS has leveled off.

I can imagine your mixed emotions.

Alex

[SarahL2491]

bummer