This is certainly not the news anyone would like to hear, and we've been hearing it quite a lot around here recently. I am so sorry to hear the doctor suspects PPMS.
Before I went on and on about the prognosis of PPMS, I thought I would recheck my thinking and found this info on the Cleveland Clinic web page--- I was surprised that they say one in 10 cases of MS are PPMS.
"What is the prognosis for primary progressive multiple sclerosis?
As with multiple sclerosis in general, the prognosis varies in PPMS. Most people start to have symptoms at about age 40 or older, or about 10 years later than is typical of relapsing forms of MS. A recent Canadian study showed that many people with PPMS were able to walk years after a diagnosis, but usually patients tended to get worse over time. This worsening usually affected the ability to walk and was less likely to cause visual symptoms or tremor. Generally, thinking, memory, and intellect are relatively spared with PPMS. People who have PPMS may also have bowel, bladder, and/or sexual problems."
It reads like PPMS can be a real mixed bag, just like other forms of MS. Lets hope that you will be one of those many people the study cites... and live a long time without the MS impacting your mobility.
Again, I'm sorry to hear this news. We're here to listen all that you want and need, ok?
lots of hugs and love sent out your way, neighbor,
Thank you everyone. I got to see the MRI yesterday and saw the lesions. My brain MRI was clean and no since of ON anymore.
It was interesting when I went off of Avonex for a couple of months I had increadible pain behind my eyes. When I started Betaseron the pain and pressure let up. So the Beta is doing something for my eyes at least.
The very first neurologist I saw told me that ON can be closely related to C-spine lesions. She did a c-spine and nothing showed at that time.
It was several months later when I had ON again and more obvious MS symptoms that I was dxd.
Lulu- The age mention in that clip fits me. I have had progress with no real flares. I have never needed to go on steriods. Well I probably should have with the two ON espisodes but not one put me on anything.
Walking is a huge issue for me. Balance is a problem. Both legs are now affected. I do have vision issues even though the clip said that is not always an issue with PPMS.
I did have a real struggle with the appointment yesterday. I was nervous and afraid of what I was gong to hear. I knew what was going on already.
I said IS THIS MS? Doctor said is someone questioning if it is? I told him I am trying to get my mind around this. Then I started to cry..........ugh.
He said it is MS and he told me PPMS but he is going to keep me on the Beta to see if it helps any. I told him how it helps my eyes. I really do not want to go off of it because of my eyes.
He started me on neurontin. My back feels better already but I have been wide awake since 4 am..............
but I was hungry. Well I better stop chatting. I am going to try and sleep. We need prayer that this split level house will sell so we can get into a ranch style home.
I'm sorry you feel so bad about your progressive MS diagnosis. I certainly can empathize with you about that condition, even though I am not diagnosed, because I have many of your symptoms and my spinal MRIs looked "messy" even though the radiologist did a great cover-up job of ignoring the lesions.
If I were diagnosed, I'm pretty sure my MS would also be "progressive" MS - possibly "progressive relapsing" because even though I continue on a downward decline, I do have exacerbations. You have "primary progressive" so I guess you don't have relapses. Anyway, "progressive" often is the fate of we older folke who dare to develop MS outside the "medically sanctioned" ages of 20-40.
I see you've been diagnosed with MS for about a year and a half. Those with progressive who started with relapsing-remitting MS generally had much longer than you did to get used to having MS before learning that their MS had turned progressive. I'm sure it's rough for you!
There are a couple of free brochures you can get from the National Multiple Sclerosis Society that may cheer you up. One, called "So You Have Progressive MS?" was written in a very upbeat fashion by a woman who actually does have progressive MS and is also a single mom. On the cover of that brochure is a photo of a very vibrant and happy-appearing lady who also has progressive MS who, incidentally, won an MS Achievement Award. Inspiring!
The second brochure is called, "Managing Progressive MS." In that brochure you will find the statement, "It is important to realize that "progressive" does not necessarily mean severe disability." That's a good thought to hold onto!
Anyway, the author of the first brochure mentioned above says that one of the best days of her ride with MS was the day she finally got her diagnosis and had a name to put to all her strange symptoms. I can understand that!!
Give yourself time to adjust, contact others who are managing well with progressive, get info. Read the above brochures etc. You have just been given a curveball - in time, with knowledge and the support of others with the same condition - you may be able to better deal with it!
I'm so sorry for this info, but it did seem that you were getting progressively worse through the months. Remember that even PPMS can slow down and progress slowly.
The party line is that 15% (1 in 7 or 8) have a progressive form. That makes sense when you remember that we say that 85% of people have RRMS. There is a form of progressive MS that initially has relapses on top of the insidious progression of disability. This is referred to as Progressive Relapsing MS and it is said that one in 20 (5%) of people with MS have this type. But, I have rarely seen mention of it in the literature.
I certainly see the benefit of continuing with the Betaseron since it appears that some symptoms are relieved.
Everyone remember that Progressive MS is more difficult to diagnose because of the apparent lack of clear cut relapses. They have to see the progression over a year or more.
And, yes, there are some meds in the pipeline that hold some promise for slowing PPMS down. Keep the faith.
I just wanted to send you cyber hugs and say I am thinking of you. I wish I could change your situation. I hope that although you have progressive MS that it's not too progressive, I guess there is always exceptions to things in life. I hope this makes sense,
Thank you everyone for your thoughts and help. It has been two years and five months since my first round of Optic Neuritis. That is when this ball started to roll down hill. It has been well over two years now and the picture is becoming pretty clear.
Thankfully I have help with my children and house keeping. We just need to get this house sold so we can get into a ranch style. I hope I hit a platue and soon.
Oh I hit post too soon. The first neurologist I saw said that a person who presents with ON is more likely to have C-spine lesions. Don't know if that is true or not.
Walking and fatigue are my main issues. My vision and toileting issues would be next. I also have areas of numbness that comes and goes.
I do not have a lot of sensory issues although I have loss of feeling more on my right side than my left. I can not feel the pin sharpness test on my right side at all and just a little on my left. I could not feel the buzzing thing on my left leg yesterday. That is new in the past 4 months.
The fatigue I feel in my legs is incredible. I am 46 so I was well past 40 when this started. However I had been dealing with trigeminal neuralgia for several years before.
Anyway, I don't know if this is helpful to anyone else or not. All I know is nothing is coming and going. It is coming and staying and RRMS did not make any sense. Now things do.
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