I, too, am a new MSAA member living where I know no one coping with or acknowledging their problems of fatigue, weakness and incoordination.
Brief history: my 80th year will be in October this year. Vision problems occurred suddenly when I was 27, 53 years ago in TX. My doc just didn't know why my eyes couldn't find a level horizontal horizon. Of course, as we all know, most of our problems appear and generally disappear, some more quickly than others. So did my eye problem did quickly disappear without a problem. Then the scepticism began, to wit, "Are you sure that's what happened". And that, problem after problem, went on for some 40 years. Literally. Nobody wanted to talk about how often these problems occured--except me, of course.
While I went on to get my DVM and PhD and jobs, I was coping with problems (primarily coordination and fatigue) which my now ex husband and I figured out "go arounds" for. No doctor wanted to hear about it because there was nothing to see or measure, just a patient's report. The reports were seemingly spurious or attention getting as there were no visible or measurable differences from normal going on except for short periods of time. One MRI taken in the early 2000's showed periventricular and subcortical white matter plaques and the docs began arguing whether it was as early onset dementia, a vague shrinkage of brain tissue, or MS.
Now, suddenly now unable to walk, and the neurologist recommending Ampyra and it working almost immediately (within an hour), the neurologist acknowledge I have not RRMS but progressive MS. And the future however, more tenuous and uncertain, remains.
Written by
Bodega1939
To view profiles and participate in discussions please or .
Well, I have to say it’ you look well ‘. I know that we with ms do not like that statement as we all know looks are only skin deep and having ms for 40+ years, you know all about pain. It’s lovely to meet you. I have PPMS as well so your beautiful smiling face gives me encouragement as I am a mere 63. Blessings Jimeka 😊 🦋
A very warm welcome to ya Bodega to the family here!👍😀💐🌸🌷🍄🌻🌺
We understand & get ya! U have much Wisdom 40+yrs. For us newbies to the M.onSter! WOw! U look great,👍 thanks for the beautiful pic!😄 Always remember, now you're family too, 💗🌺🌻💐 Many Blessings🙏
Welcome, Bodega 1939! I am so glad that you have joined us. I was diagnosed in 1982, after years of walking holding on to walls, tremors and so on. I remember so well when there was no way to get a diagnoses, and nothing to treat you with if you got one! We are tough, strong and experienced in how we, and our bodies, deal with MS. We can handle anything!
Bodega1939 Hola and welcome (though you may have just displaced me as the senior member on the forum). I was (finally) diagnosed at age 70, 9 years ago come July, after a journey to diagnosis much like yours. This means we will very briefly be the same age (numerically, at least). My symptoms began when I was in my 20s but because of their episodic nature, no one could observe them while they were occurring. Hence, they were easy to dismiss. As a medical professional you have more understanding than I of how lesion location affects progression, as well as the interplay between age and MS, but because my MRIs are stable my current neurologist is unwilling to listen when I tell her that I am experiencing a slow decline in function. She seems to believe that at my age, this is to be expected. Once again, I am enraged and embittered by the inability to have an equitable discussion with a MD about what is occurring to me. Fortunately, I was able to converse with a young man doing his residency in neurology who affirmed to me that (as he had been taught) a patient is the best reporter for what is normal or not for her/himself. So perhaps a younger generation of doctors will be better listeners. I fervently hope so! Apologies for the detour into my issues. It's lovely that Ampyra works for you. I tried it but suffered adverse reaction so didn't continue. I hope you find the forum as supportive as I have found it! Welcome.
Ah, it was very nice to read about you, goatgal, though I am not happy you have had a similar experience. I am thrilled you are doing well, however.
Our similar, oh, so similar histories, reflect what I have heard others say. I wonder how far back in history MS has been reported? I need to look that.
My family has no genetic history of MS or RA or Sjogren's or neurofibromatosis type 1 or anything else I have been found to have. As a consequence of that my own kids and parents have been sceptical forever. That knowledge has had a quelling effect on trying to get some kind of support even to do house work.
The use of Ampyra is very new, maybe only 3 years. Furthermore, sixty percent of those people who try it find it doesn't work. Since the mechanics of how it works as a potassium channel blocker are known, I wonder if other work is being done. Surely nerve action potentials are affected by many other elements. If I run across that information, I will send you an email to MSAA. There will be others like us, no doubt.
Keep your eye on the gut biome. There is good information from researchers who are studying the interactions of a disturbed gut biome, and toxins emitted by bacteria, absorbed through our own intestinal walls and distributed to our tissues. Similarities of those toxins to our own proteins in our immune cells is so great that when an immunological response mounted against the bacterial toxins, the immune systems can't "see" the difference between those toxins and proteins in our own cells. Hence the "autoimmune" reaction.
I think once we get that all figured out, we who have AI diseases have a chance to recover. [In the meantime, better late than never, I don't consume artificial food of any kind if I can help it!] Ha.
I look forward to hearing from you again. Nemaste.
That photo was taken when you were 30, right? You have a lovely and energetic smile. I'm so glad you found us after all this time of dealing with MS. You'll surely have lots to contribute!
that picture really is very nice. You smile a lot the wrinkles around your eyes ay that. I hope perhaps I have such glorious wrinkles one day. Nice to meet you and welcome.
I am as old as dirt (I hit 60 in May - 1 year closer to retirement!) You look much nicer than me! Welcome to this online family! We share joys and concerns, laughter and sorrow. So glad you found us and joined!!
hi Bodega. from another 1939er. I'll turn 80 in Nov. You look great. Love that hair. Mine is beginning to thin some. Anyway I'm still walking with now an arthritic flair added for fun. Have had slow progression since the 90s but last two years have taken their toll. Hello, nice to know there are some of us hanging in there.
Yes! We are tough I have to admit. A lot of living under our belts, I must admit. But, if you live long enough with enough pain, finally you learn which pain is important and ignore the others! (Ha. Mostly, that is!) I, too, have RA and when my RRMS turned to PMS at the same time as the RA popped up as an identifiable entity, I had a hard time determining what was causing what. Now, a few years later it is much easier.
When I was younger (like in my 40s and 50s) I never thought I'd be like this...I thought it was relapsing/remitting forever. I was just so naive. But again, I am learning to adapt and I think that is the secret to continuing to enjoy each day at some level or another. There is always something wonderful to look at outside!! To read or talk about. The internet is part of the salvation, I think.
I thank you for writing to me. Please, do it again and tell me about you. If we make a statement or two s about each 5 or 10 years time of our life it might be interesting. I will start: birth to age almost 7, born in the Philippine Islands, daughter of a gold mining engineer and my mom, then transferred at about age 3 to POW camp in Santo Tomas, later to Los Banos until we were liberated in Feb of 1945,
I think this could be interesting. Maybe we'll start a trend! Nemaste!!
its funny. hearing your history brings up what a defining part of my early life is marked by memories of the war. my mother and father had taken in three cousins of mine and when war was declared they all had become the right age to go. not something I think of often or at all really. thanks for this special memory. We remained close with these cousins and their hughly expanding families through the years. Were you able to have any schooling during that time. and where did you go after that. I'm trying to imagine that experience. That was kindergarten time for me--Utica, NY. Also time that my immediate family was growing. I'm oldest of 5. so they were busy years in many ways
Bodega1939 , that's really good news about how well Ampyra seems to be working for you. I'll be inspired to think again about it based on your experience. I was diagnosed in 1980 but onset must have been in 1961 though nobody thought to look into it at the time, when I had severe vertigo, blacked out and fell, fracturing my front teeth. Other oddball problems over the years that I didn't think much about, including at least one more vertigo spell, and in the late 1970s a flock of symptoms came on and most of them never really went away. I'll be 79 this spring. I did manage to marry and have a daughter and a son--and like you, I received a Ph.D. The daughter died at 27 but I live near my son and even have a grandchild now. Also like you, I try to keep an eye on MS research. Nice to "meet" you!
Nice to meet you, too, agate. It is frustrating how long it has taken to be diagnosed correctly. And why in the world has the medical community thought "old people" can't have MS? I really want to know what ageism has to do with it.
You are fortunate you live close to your family. My son is ex military Special Forces and works all over the world...he is not close physically to where I am. My two daughters have their own families and agendas and I am loath to interfere with that. I feel so fortunate to have gone to school as much as I wanted to...it is enabling me now to be a more responsive and responsible patient than I might have been.
I will be 80 in October. I was reading the other day that our age cohort does not live, generally, as long as either your or I have. Looking at the prognosis of SPMS or PMS, I am not so sure living long is such a grand idea anyway.
And speaking of Ampyra, that 12-hr dosing schedule is really important. I was rushed the other morning and was 5 hours late taking the Ampyra. I couldn't move my legs. I will never do that again. I'll carry it around my neck if I have to! Ha!
Bodega 1939 I'm following you in age very closely, at 76. I was diagnosed only 4 years ago, but had most of the same symptoms for over 35 years. Sleep issues forever, dizziness that was unexplained, then more recently heaviness of legs that was just plain weird, until my diagnosis. My current issues involve pain in my neck, specifically the occipital nerves, and I've had the nerve blocks several times which provide temporary relief. I've also been given gabapentin 300 mg to take 3 x's a day, but can only take it at night, since it is too strong to take during the day. I have to cut the capsule in half if I need it during the day, and take the powder in applesauce. What a pain! I have requested the 100 mg pills twice now, but since I was last prescribed the 300's, he won't give me the 100's. Oh well, you have to do the best you can with what you have. I was glad to hear of your experience with Ampyra, as that was suggested to me at one time, but my legs are supporting me well at this time. My husband (81) and I are going this weekend on a little trip to the mountains, where I hope to be able to hike to a waterfall or two. If they are less than a mile, I think I can make it OK. The 26th will be our 58th anniversary. Simply amazing!
In doing some research on this site, I found that you live nearby. Since my hair is as white as yours, maybe we could be friends.
You are "on" '4fishylady'! I am ready to have a new friend who knows what it is we experience almost daily. For the longest time it has been like speaking Bantu. Like you, I read voraciously (and so does" goatgal" also found on Health Unlocked. She is also older than dirt but not compost yet!!) and any number more, however I doubt any are much older than we!
I just had a shocking experience in that I was dx'd with yet another autoimmune disease (that makes 5 for me) but this one is a little different, specifically Adrenal Insufficiency. The RA and SPMS are bad enough but this one takes the cake. But in all of this, I have come to the conclusion our AI problems, as different as they seem to be, have a basic problem. I think from all my reading, it is a lack of ATP generated by the mitochondria or every cell in our bodies. I will provide references if you are interested. Then, depending on the tissue or organ, it manifests according to what that tissue or organ actually does but subverts it to be nonfunctioning or functioning only with great difficulty...but mostly off the rails.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Living 2 years with MS
New to this site but not new to MS
Lonely
