The elephant in the room
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flyway2me posted:
So not sure what I'm looking for in answers here just trying to figure things out and hopefully decide my gut is wrong. My mother, age 76, is living end stage MS right now so I am very familiar with everything involved. Yep, she is a very stubborn, brave lady and she fought a good long fight, but a stroke in January pretty much ended that fight. She's still fighting, bless her heart, and my Dad is trying his best to take care of her at home, let me tell you it's not easy with the way healthcare works these days, my Dad is indeed the biggest hero I've ever known.

So here's where I come in, I have had increasing random pain/nerve stuff going on for about the the last five years. I have gone from someone who was physically fit, for example I could carry two bails of hay to my animals at one time with no problem, to someone who can't go down the stairs without holding a railing. And so many other random symptoms I feel silly listing them. I have been diagnosed with osteoarthritis in my neck and lower back with stenosis. I've blamed that for most of the random nerve stuff going on, however the chronic fatigue and pain and brain fog take their toll. Recently, I had to go for my annual to be able to renew my pain meds (which I hate) and I got brave and did my bloodwork-I hate going to the Doc. Turns out my Vitamin B12 is low (low 400's) and my Vitamin D is really low (11). Hence "the elephant in the room". What comes first, MS or the deficiencies and is it coincidence or should I explore the really scary possibilities?
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hackwriter responded:
Dear fly,

The symptoms you've described along with having low D and B12 are not enough to suspect MS. And although studies have shown that a very low D level is one risk factor in developing MS, most of the U.S. population has below normal D. We who live in the northern hemisphere are light-challenged and cannot absorb enough D from sunlight alone.

What's more, spinal stenosis and osteoarthritis alone might account for your symptoms. And the fact that your mother suffers from MS only raises your risk of developing it to between 1 and 3% (the population at large has a .5% chance of developing MS).

That said, if you are really worried about the possibility of MS, talk to your doctor about your concerns and ask for a referral to a neurologist. Testing for MS will include brain and spine MRIs, an LP, a clinical exam, and a discussion of your history of symptoms, medical conditions, and drugs.


Hope this helps.

Kim
 
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Rory26312 responded:
Hi

My first reaction is to say find out what the elephant is and then see what your options are. If it not MS then great but try to get a treatment plan for your other conditions as the will only get worse .

A good neuro is the place to start and whoever else your PC recomends if the can not treat your symptoms themselves.

Rory
 
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flyway2me replied to Rory26312's response:
Thank you for your responses, I know the drill...the neuro the test etc. Unfortunately, watching someone live with and deal with MS virtually my whole life (my mom was diagnosed before she had me) and dealing with my own issues have left me a bit jaded on the whole diagnosis/treatment plan. I have been to a neuro, his plan was an ablation to the nerves in my lower back, or give me whatever drugs I wanted to try to make me feel better (the way he fumbled w/ words I don't think he even looked at my MRI of my spine), that really didn't sound like a good plan to me and I haven't been back. I have always listed my mother on my med sheets and not once has a doc ever said, "wait, your hands and feet go numb, you have extreme fatigue and your balance is off?" Honestly if I were have MS not sure what I would do anyway, it's all tests and experiments as far as treatment goes. I guess my post stems from frustration. I am not the person I used to be and that frustrates immensely. It's just that the low b12 and vit D raised a tiny bit of a red flag for me. I'm not overweight and my diet is pretty good. I have always pushed the limits on maintaining physical fitness in the past. Now I just get by and deal w/ the pain day by day. As far as meds go I'm on gabapentin for the random nerve crap and I take tramadol. at night for pain so I can get some sleep. The Vicodin and Flexerile prescribed sit in the bottles for only the really, really bad days, I hate taking that stuff and if I have to work, live and be a mother and wife they pretty much are not an option. I hate the other two as well but they do give me some relief with less foggy brain effects. I know I'm rambling a bit here but hopefully this is where the support part of this forum may come into play. My issues aside. this week, my father has faced the fact that indeed hospice is the way to go for my mother at this time. MS is so cruel.
 
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hackwriter replied to flyway2me's response:
Dear fly,

I'm so sorry to hear about your mother, that just sucks. You're grieving on top of worrying about your own symptoms, and the by-product of all that is a feeling of helplessness.

I've been in that helpless place more than once, it tends to cycle around from time to time. As far as your view that MS treatment is all tests and experiments, there is a lot of truth to that and we do learn to dwell in a sort of gray area. But it isn't all gloom and doom all of the time either. Drug therapy is trial and error and sometimes we find something that works. And then it changes. But so do our bodies for reasons other than the disease. We are aging, too. I have degenerative spine disease on top of the MS. A heating pad can go a long way in relieving spasticity pain and spine pain. Vicodin was useless and so was gabapentin. Lyrica helped some of the pain (not the spinal stuff) but it was so constipating I stopped taking it and I'm doing fine.

My body is not what it once was for more than one reason and I do still grieve for that person I used to be prior to my first MS flare at age 41. I'm 55 now. The older we are when we develop the disease, the more memories we harbor of having been normal and healthy for most of our lives. Once I was a classical and jazz musician, a passionate gardener/landscape designer and an interior design enthusiast. Now it takes all day to push a vacuum cleaner around the house and do dishes, I have to rest every five minutes. I retired at age 51, my brain/body can't keep up with a full-time job and deadlines. We do adjust, though. Living in the moment is a frightful cliche, but that's exactly what I've learned to do to keep myself sane.

I heard someone say once that having MS is like suddenly getting old when we're still young. I think that's one of the better analogies I've heard about what it feels like to have this disease.

As for your issue with Low D and B12, are you taking supplements to raise those levels? Sometimes such vitamin deficiencies can cause symptoms by themselves.

I hope you'll come back and tell us your thoughts, and do give us updates about your mother and your own health. And please do give us your first name, too.

Kim
 
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flyway2me replied to hackwriter's response:
Oh Kim you are so sweet, I feel like we should sit down and have a cup of tea, ( I don't drink coffee), my first name is Kristin : )

I don't want to write a book here but I can identify with so much of what you said, for now I'll talk about my Mom, I can deal with me in another post.


Today she is back in the hospital which is actually a good thing. My dad is trying so hard to take care of her at home but he is not a RN. It's so hit or miss what insurance will cover and how many home health visits they allow and all that nonsense, anyway this trip is because her pcp took her off of the prophylactic meds for urinary infections that the hospital docs wanted her on after her last trip to the hospital. She has a cath and the result was a syrupy coffee colored urine that kept clogging the catheter. She stopped eating again and was in a very fast decline, she is now under 90 pounds. She is doing better now and the meds are working but will be in the hospital until at least Wed.


I guess the silver lining is that my Dad has learned his limitations and reached some acceptance, he is now very seriously pursuing Hospice. Thank goodness for that, I know I'm losing my mother, mentally she does not know who I am anymore, physically she is a mess. I don't want to lose my Dad too and this is taking a huge toll on him as well. All of this is still pretty new, we had the MS down we could deal with that, we always have. Her physical decline has been pretty steady over the last 20 years but she's stubborn and dealt with it as best she could. She did start having increasing cognitive issues in the last few years but she still knew us and you could have a conversation with her, she was still Mom-though she did come up with some wild stories.


She had a stroke in January and it's like someone flipped a switch. The MS scarring in her brain just didn't leave any chance for her brain to re-wire and overcome the stroke. My Mom fought such a stubborn fight against this disease for so long, but now here we are at the end of it and this is the worst part hands down. I'd take a head on collision in a car any day over what she and my Dad are going through.


A note to everyone: prior to her stroke, as I said, she started have some serious cognitive stuff going on. Hallucinations and such, she started talking to herself in the mirror and thought there was a family living upstairs. This is the important part anyone dealing with MS should know, as a patient or a caregiver. I'm convinced that she had an ongoing urinary infection that they were not treating properly. She told my dad she thought she had an infection and he would take samples in. They would test it but they did not do cultures. They said it was fine(because it was the clean stuff she could actually get out of her bladder, not the icky stuff sitting there that she couldn't void), it wasn't! She gave up on trying to say something was wrong, and because of the MS she didn't have the feelings to signal "YES THIS IS A URINARY INFECTION TREAT IT NOW!" So on top of the stroke and the MS she had an antibiotic resistant urinary infection for who knows how long. Much of the new research shows that these infections can cause serious cognitive changes. We all know that urinary infections are par for the course with MS--if somethings up please have that checked.


I know that the end stage of all of this is inevitable for my Mom but it is appalling how badly this has been handled by the health care community; from her first hospitalization in January, where they left her in restraints for a week (causing bed sores she didn't have when she got there) until they finally did an MRI and found the stroke, to her personal care physician that took her off of the meds that were working prescribed by the second hospital we took her too. We know the outcome but we care how we get there, is it too much to ask that we get there with some dignity?