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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
1627868 tn?1333886342

Finally

Hello all!  I hope everyone is doing well!  I have some news.....

I received my offical dx today; it's MS.  PPMS it sounds like, which means it sounds like I will NOT be starting on a DMD.  My doctor said that we may talk about it again after he does a little thinking, but so far the research does not support the use of DMD's in PPMS, as it doesn't really slow the progression.

I told him about being a member of an online support group (I didn't tell him which one) and that I was pretty sure there were some with PPMS who were still on DMD's.  That's when he said he would think about it.

So, anyways, I thought I would share the news.  Just when I had given up (okay not just, I gave up months ago really) I receive the dx.  Go figure!  I have another appt on Thursday so I will post again to let everyone know what comes of it.
Love and hugs to all!
Sarah
17 Responses
956292 tn?1334054869
Hi Sarah,

I am so sorry to hear of your dx. but glad you have an answer. I would like to hear how this came about for you.....

You are in my thoughts and prayers.... I know you have been struggling..

Love Jenny
1475492 tn?1332884167
(((Hugs girlie)))

I am feeling bittersweet for you.

and wanna know...who dx'd you? :) ;)

PPMS makes sense doesn't it? That would explain the constant symptoms instead of like mine where they relapse and remit.

You are in my thoughts and prayers as well,

Love ya,
~Barb

1917408 tn?1421952040
I am so sorry to hear that when you finally got an answer it had to be THAT one!

I would like to hear the long story, too, when you are ready.

{{You}} are definitely in my thoughts as well,

Valerie
1627868 tn?1333886342
Thanks guys!  I am actually okay.  There has been some work going on behind the scenes I guess.  I saw this therapist today, who is part of this fibro program I've been going through.  He talked with me and made sure I was okay.  And suprisingly, I am.  I feel more than okay, as odd as that may sound.  (I know all of you here understand that completely!)

So, as most of you know, I began seeing this physiatrist/pain specialist about 2 months ago after seeing an MS specialist who said I had fibro.  The first day I saw him and told him everything, he asked who said I didn't have MS.  After I thought about, there was only one neuro who said I didn't and that was the very first guy I saw over a year ago who told me to get over it and move on with my life.

I guess I never was told I didn't, I was told either I can't diagnose you at this time, or told nothing at all.  So this new guy said right away that I have it but that he wanted to consult my neuro.  I guess there was a lot of consulting going on.  Between the two of them, they agreed that I do have it but that because I feel comfortable with the new doctor, I should stay with him and under his care.

Then there was talk about what type I have.  He proceeded to tell me that there are 4 different types and explained a little about each one.  He started with one, then another, then explained RRMS, then kinda paused.  He then said, then the last kind is called PPMS.  It is more rare than RRMS and a lot of times it doesn't show the same lesions as RRMS does.  It starts off as progressive in the beginning.  You start with a little symptoms here, then a little more, etc.  Sometimes, you don't even notice it until you can't walk normally anymore.  (I am paraphrasing cuz I can't remember exactly what he said about it, but you get the idea.)

That's when he said that's the kind that we think you have.  I believe it, after I thought about it.  I do have lesions on my brain, like 6-7, but none on my spinal MRI.  From what I have researched, PPMS shows as lesions in the spine most of the time.  I asked him this and he said they believe I do have lesions on my spine as well, but that they just haven't been seen yet.

This would totally explain my lack of "remitting" of symptoms.  And I don't seem to have the big relapses either.  I get new symptoms but they don't really go away and they don't hit me all at once either.  It sounds like when some people get a relapse, they are really knocked on their @$$.

Anyhoo, that's all I can think of for now.  Suprisingly (or not) I actually feel at peace right now.  Maybe it will all hit me in a few days.  Thanks again for all the love, hugs, and prayers!
Love and hugs and prayers right back at you all!
Sarah
551343 tn?1506830518
Hi sarah so many people with FMS go on to to be told they really had PPMS and by the time someone actually sits and listens and take their head from under their backside the patient has moved forward to far for any treatment.

when i had my off the record chat with my GP last year she said if i had MS it would be PPMS. If you look at my timeline on my post the other day i could have had it from 1980. OH NO YOU COULDNT said a neurologist it doesnt hang about that long........well doh....yes it does. My sisters mother in law had MS for 40 years......she was 80 when she died and was only diagnosed when she was practically in a wheelchair when she was just under 60.

The thing is if you look at it you have swapped one FMS for one PPMS lol.

You can try LDN though (I think its LDN). I know a few PPMSers who are on that and find it does help.

I think you are perhaps a little bit in shock at the moment the wind has been sucked from your sails.

Big hugs Sarah, hope you stay with us though lol. xxxx


Avatar universal
dear sarah,

answers in this case are bittersweet.  i am glad for you to have some closure with respect to your diagnosis.  i know you were resigned to channeling your energy toward symptom management, but there may have always been a lingering thought that an actual diagnosis will take care of.

my thoughts and prayers are with you as you navigate your way along this path.  i certainly hope you will be a part of our little community.  your words of wisdom and compassion have been so helpful to so many members of this board.

with hugs and blessings.
binx

1627868 tn?1333886342
Thanks guys!  I will certainly remain an active member on this forum!  This is my home and I feel the most comfortable here with you guys.  You have all helped me through some rough times and I will never forget that!  Never!

Today feels pretty much the same as yesterday.  When I was talking to the therapist yesterday, he asked me how I was feeling about my dx.  I told him suprisingly I felt okay about it.  He went on to say sometimes people deal with diseases like MS by not looking into the future and living in the here and now.  I think he is right in a way.  When I look into the future, all I see is my kids getting married and having kids and me being there for it all and being healthy enough to enjoy it.  That is all I care about!

I will not let this get the best of me.  When all this talk of MS first came about over a year ago, I freaked out!  Really bad!  I work in hospice and I've had some patient's, one in particular, with MS.  All I could picture was her.  She was in her later 50's, in a nursing home, bed bound.  She could not move any part of her body other than her head.  Her mind was completely there and she was stuck inside a body that didn't work.  She could feel most of her body, she just couldn't move.  

Even before I was told it may be MS, I always thought to myself I never wanted to go like that.  What a horrible way to spend your last years/months on this earth!  I have been assured many times through all of this that most people with MS do not turn out like that.  Most people live fairly normal lives and have just about the same life expectancy as someone without MS.

I'll let you all know what comes about from my appt on Thursday.
Love and hugs!
Sarah
1530171 tn?1448129593
Hey Sara and everyone.
The clinical trials for DMDs were originally done for RRMS.
FDA, based on those trials, approved them only for RRMS
and not for PPMS. Insurance will not pay for DMDs if you are dx with
PPMS. It's a fine line but that's how the system works.
As someone mentioned here, if you're only missing 1% for a dx,
you know you have it, but it is not official and it's not in your file.
And this alone can make a world of difference. A whole 1%!!!
There are less absolutes in medicine and a lot more marginals, I'm sure you know what I mean by this. Which works against most.
As far as the LDN goes a young man in my town  - moved away last year as he got a job somewhere- found a doctor to prescribe it and with this treatment he regained his health and life! He had PPMS.
When I'd seen him walking , I couldn't believe my own eyes!

I am one of the most positive people you will come across, so don't be surprised, if I still believe in the incredible ability of self-healing.
If it wasn't for self-healing most doctors and hospitals would be out of business. lol!
I was privileged to meet Deborah King in a conference last year.
If you want to find a prime example of extraordinary healing, SHE is it!
Cancer, Depression, Bipolar and Addictions! It is an incredible story.
She has become a Great Teacher, Healer and a great inspiration for people all over the world. Do a search or go to Hay House Radio and do a search there,to access her free radio show.
May be, I just cannot buy into the accepted notion, that a medical opinion and a medical dx is any way limiting any one person from healing.
Quite the contrary, it may be the path for discovering Truth and Light in your lives and totally turning things around.
And by saying this, I mean no disrespect for anyone's suffering - been there,done tha t-, I understand the limitations of medical protocols and the way physicians are trained and how the system is set-up, but I have utmost respect for the Power of our Spirit and the Connection with the Divine that can give us the ability to Heal from anything.
This takes precedent ABOVE anything else!  
God Bless!
Niko



551343 tn?1506830518
Thank you that was a good post. I agree with all of it. Mariax
551343 tn?1506830518
The lady who had MS in your hospice probably had the rare AGGRESSIVE form of MS.

One of the reasons why my husband doesnt want me to have MS is when he was young in his twenties he had a friend who was diagnosed with MS at age 27 and was dead in six months. I told my husband he would have had aggressive MS with complications probably his kidneys. He did say yes well he did die of kidney failure.

I have been disabled going into 6 years.

I seen my wonderful grandson who is 19 this year go through hell and cut himself, wanting to die, and we pulled him through.

I now see him 6 years forward at UNIVERSITY doing really well and now in a solid relationship even if a bit young for that lol.

I have seen so many things in 6 years.

I hope to see a lot more in the next 6 years lol.....

MS is not the god of illnesses. Its a small tiny sliver of illnesses that we can get in our lives, and in the grand scheme of things there are more people laying in hospices with cancers, and alzheimers then MS.

So at least you know where you stand now. Now you can fight it and become more focused on healing like Niko said.
1627868 tn?1333886342
Yes, you are 100% correct.  There are WAY more with cancer, alzheimer's, and even heart disease.  I have seen a few with MS in the end stages, but no one patient has stuck out in my mind like this one lady.  None of the patient's I have taken care of have.  Maybe she is out there somewhere looking out for me, lol, that I think of her often?  Who knows.

I find myself today questioning my dx.  I've spent the last few years looking for an answer, now I have one and I am starting to think they are wrong.  Do I seek out yet another opinion to make sure I DO have MS?  How odd!  Maybe I am in the denial stage?

I'll let you all know what becomes of my appt tomorrow.
Love and hugs!
Sarah
Avatar universal
dear sarah,

if i were you, i would find a lyme literate doctor to order igenex lab testing on you to rule out lyme disease.  it is expensive--about $800 to run all the tests, but if you are having doubts, these results may be a good piece of information to help either refute or confirm the dx.  paying for the tests was almost prohibitively expensive for me, but i am happy to have the information nonetheless.

like maria reposted the other day--lyme can be a true MS mimic, and with your lack of remission, it really may be worth the investment.

i just wanted to add that into the equation for you.  i hope i don't seem intrusive.

blessings,
binx
1530171 tn?1448129593
I helped someone get the lyme testing through IgeneX-a naturopathic doctor signed off the papers and it was accepted. The cost for a complete
Borrelia/Mycoplasma and co-infections panel was close to $1500.00 CAD.
Could be cross border fees, higher courier costs and exchange? CAD is at par or higher than the U.S $ but banks charge a hefty conversion fee! lol!
But these costs may explain the difference. It still feels high, though.
Binx,I am so glad you mentioned this, as I may sound like a broken record, or as if I'm trying to sell my book -lol! - when I make reference to the possibility of Lyme.
Blessings.
Niko
551343 tn?1506830518
I had the standard lymes blood test it was negative. IF I went to my GP and asked her to retest what would she need to test me for?

maria.x
1530171 tn?1448129593
Hey Maria!
Chances of her getting any reliable or helpful findings are close to null!
It would be a waste of time and resources, unless she could be used as
a facilitator/liaison for making appointments, signing off papers etc.
Testing for Lyme is an extremely complex procedure. The challenge is mainly b/c of the difficulty reproducing the spirochete which is seldom found in the blood or spinal fluid samples. Instead it is deep within the tissue where it causes immense pain and suffering along with continuous damage and injury to the patient.
There different variants of Lyme Disease according to the system whose  cells are mostly affected by the infection. Like Neurological Lyme
Disease and Arthritis Lyme disease, which by the way could be both representative of your condition.
And the  U.K is not Lyme friendly! Like Canada lol!
In the U.K. there's very little effective testing available and therefore, clinical findings and symptoms may have to be considered by the  specialist to dx. You may want to check with the British Lyme Disease Foundation website for more info-just a word of caution! Any reference
to CDC and IDSA will provide biased and possibly dangerous information!
You need to screen every piece of data for accuracy, as there's a lot of bias out there!
You may want to go to the "HIGHLY SENSITIVE AND SPECIFIC LOW-COST LAB-ON-A-CHIP SYSTEM FOR LYME DISEASE DIAGNOSIS" website:
  http://www.hilysens.eu/index
As I have no references for the aforementioned websites, I'm not necessarily endorsing any information supplied. You have to judge yourself.

If I were in your shoes, I would try to find a Holistic Medical Practitioner,
who is familiar with such conditions. The conventional medical approach
may be just too...ANNOYING and INEFFECTIVE.
Suspected such infectious conditions, should the immune system be compromised at the start of the abx treatment, cannot be cured easily, specially in progressed states of the infection and after serious damage has been done.
The antibiotics may further weaken the immune system while the Borrelia or any other infectious pathogen is still "At Large".
Please check my previous reply to you for the Naturopathic type of approach.
It seems like a lot, however, not so when the other alternatives are considered.
Should you decide to explore this , let me know as there are many things to be verified first. There are a few promising treatment options available
to be investigated later.
Love and Hugs!
Niko

1719886 tn?1311614031
I'm so sorry that I haven't been around lately, especially that I missed this turning point you had! I'm conflicted because I'm so very sorry that you are dx with MS but I'm so happy for you not to be in limbo anymore. Big hugs go out to you!                                                                                                        Chanda
Avatar universal
Sarah - I am so sorry to hear of your diagnosis.  But I am so happy for you that you finally have an answer!  

Re: the discussions on Lyme testing, if costs are an issue, ..an IGeneX Western Blot is very useful for most people and I believe it costs $200 USD. IGeneX shows all relevant 'bands' in the result, not just the CDC surveillance criteria that most labs show. My WB there showed I had 2 Lyme-specific antibodies, whereas the CDC said I was "negative". I tested negative on all the other Lyme tests. (I do indeed have Lyme.)

For people who still test negative, there is also a lab in Pennsylvania called Advanced Laboratory Services Inc that is now offering a culture test that is highly accurate for about $600 USD. You must be antibiotic free for a month before the blood draw.  I don't think they'll take international shipments yet.   www.advanced-lab.com
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