A question for those with m.s

Hi all, I have had some strange feelings in my body before I got my cancer diagnosis this summer. I’ve had a slight tremble that comes and goes for a few years. I had a spot right under my right front pocket. That would randomly tingle as if my cell phone were vibrating, but my phone wasn’t in my pocket. Then this spring I started getting heat intolerance and shaking and feeling like I was going to pass out. Then breast cancer and treatment. And every dr I saw I told about the older tremors and tingling and current heat intolerance and shaking. Everyone blew me off except the oncologist who did order a brain mri to be safe and check for Mets.

No Mets but a LOT of something called whitewater hyperintensities (wmh). They are all over my cerebellum and brain stem. Radiologist report said “no clearly defined lesions in optic nerve or corpus callosum so no primary demyelinating disease”.

I have been referred to neurologist, had a 3 month wait but finally see her wed. I am so worried that she will blow me off too. I don’t necessarily think I have ms, but I do know that something is very wrong with me. I know my body and this isn’t right. I am having trouble with riding, some days I feel that I have a good connection between my brain and body and I ride well and can follow directions. Other days I can barely work at the walk competently. At the trot I am all off balance ands hands going all over with the reins.

I know the hormone blocker I have to take now causes lots of nasty side effects, but I was having these problems before this nasty med.

Does anybody have any ideas or thoughts I can bring up to the neuro? Does any of this sound like anything any of you have experienced? This is getting disabilitating. Tia

My friend’s MS was first noticed in a routine eye exam. It sounds like there are many different symptoms that people experience. She had also had family members that had assorted autoimmune disorders.

I hope that you get some answers from your appointment. My understanding is there are very promising treatments available but I sincerely hope you receive good, encouraging news from your doctor. I will pray that you get a good report!
Take care!

Maybe @Jackie_Cochran will post her experiences. Tagging her so she sees this.

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Thank you RTR, I was hoping she would respond.

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I have MS. As far as I know I have never had damage to my optic nerve from it, and it has been 26 years since I was diagnosed. My neurologist never pointed out about damage to my brain stem. I am reasonably confident that I have some damage in the “cross-over” part of the brain that connects one side of the brain to the other, sorry I don’t really remember the scientific name.

I have atrocious balance, both side to side and front to back. My ability to coordinate my aids is often severely impacted. I have pretty constant hand tremors, usually mild but they get worse when I am tired, and a LOT worse if I drink coffee before I ride the horses (I wait for coffee until after my rides–as per the horses’ instructions). My proprioceptive sense is as bad or worse as my balance, I often just don’t exactly know where a part of my body is in space, especially my head, hands and feet.

The exhaustion can get overwhelming. I ride pretty early in the morning, both because I have more energy then and so that I have a guaranteed ride time in the morning when it is still cooler in the Summer.

I had to stop owning horses after the group I had all died, I just could not guarantee that I would be able to feed and water them every day, much less keep them groomed to an acceptable standard for putting tack on them. ALL the horses I owned back then (Arabs., part Arabs, and a Paso Fino) did not see any reason to change, I had either broken them to saddle, trained from greenie, or a ruined mare I had reschooled, all of them “said” “We KNOW you can ride, lets have some fun!!!”

So I went to riding lesson horses at a lesson stable since these horses know that a lot of people cannot ride well, and learn to forgive these not very good riders.

When I started lessons I told my teacher that I NEEDED her to be a position Nazi with me since I can not tell exactly where my hands and feet are.

I ride Hunt Seat, or rather I ride Forward Seat the original modern Hunt Seat. I train every horse I ride to go peacefully on loose, sagging reins for those days that my hands are just too bad for contact. I also teach the horses I ride voice commands if they do not already know them (check with your riding teacher for the voice commands the horse knows already.) For a while I also trained each horse I ride to go bitless (either the Nurtural bridle or the Light Rider bitless bridle), there were a lot of summers in which the horses would start “cussing me out” if I tried to keep contact in the summer heat. Luckily for me I finally found bits that the horses would accept contact with in the summer heat (Wellep bit-no longer made, and titanium bits, expensive but the horses let me keep contact in the heat.) You might also see about training the horse to neck reining if you think you will ever need that (I have not so far.)

Ice vests are your friend in the summer heat.

I wear a Trauma Void helmet (MIPS), a protective vest when it is cool, and silicon full seat breeches. The silicon full seat breeches are simply wonderful, my seat stays in one place in the saddle so at least my butt knows where it is and my lack of balance is not as hard on the horse.

On my saddle I have the R-stor riding aid, Rider Grips, and Venice slope safety stirrups.

I can only ride 30 minutes, then I get too exhausted. I take private lessons so I do not have to keep track of other horses and riders in the ring at the same time I am trying to keep track of my hands, feet, seat and head.

When the neurologist looks at you he/she should give you a “soundness exam” a lot like what the vet does when you ask him to look at a horse that might have something wrong with them, except for trotting on a loose rein.

If you have any questions just ask. I will try to help!

Do not let the neurologist to talk you out of riding. Riding horses and taking lessons with a “position Nazi” are the only reason that I can still walk on my own two feet (2 canes). When I started riding again I was using an electric wheelchair a lot, I never had to replace the wheelchair when it wore out because I can still walk on my own.

As I tell my neurologist I can safely experiment with my balance on horseback, especially my front to back balance. I also tell my neurologist that the horses I ride know MUCH MORE about the state of my nervous system than any neurologist ever will.

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Thank you for responding. You are amazing in keeping riding with what is clearly a high skill level in spite of the challenges. Do any of the “symptoms” I have described riing a bell with you? As in, do you think I should specifically ask the neuro about possibility of ms? I have honestly been concerned about it for several years, since my tremoring started, and the weird randomly occuring tingling. Sometimes my arms feel really restless too, like I just need to shake them or something. Kind of like restless leg syndrome but in my arms.

Everyone if blowing me off. My PCP had the nerve to say (twice on 2 diff appt;s) thats just menopause. Ummm no, that was done and over 4 years ago. Why would things change now. Other dr’s blow me off saying the anti depressant I am on has shaking as a side effect. Yes it does, but I shook before I started it, and I don’t shake everyday. If it was the meds it would be everyday. No one is taking me seriously, and that scares me. Especially right after having cancer. The latest blowing me off is “you’ve been through alot, this is just anxiety”. Well actually I breezed thru treatment, surgery was easy, recovery no complications, radiation easy peasy. I know that I was VERY lucky, many women have an absolutely horrible time of it, and I met some who were having chemo and rads at the ssame time, I really felt bad for them.

And the Aromatase inhibitors they want you to take for 5 to 10 years after can cause a huge variety of side effects, many of which overlap with what I was having before.

I was really hoping someone would read my post and go “I know what that is, thats EXACTLY how I felt before I was diagnosed with XYZ”.

I own my own boy, he is a saint, I love him to pieces. If I just want to walk, he will walk all day for me. I will ride him until I can’t possibly get my leg over even with help.

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MS symptoms can vary widely between people.

I finally got diagnosed because my primary care physician had been telling me for 18 months that the fact that I could not feel the skin of my left leg was probably a “pinched nerve” and would go away on its own. I finally asked him for a referral to a chiropractor (since he was not doing me any good) and he referred me to a orthopedic specialist. It was the orthopedist’s physician’s assistant who first brought up the possibility of MS.

Then the neurologist, then the MRI, then the diagnosis of MS. That was in 1993, but thinking back after my diagnosis I had been suffering from the effects of MS most of my life, I think my first definite attack was when I was 6 years old in 1957 or so. I have always had lousy, super lousy balance, and my coordination was always horrible.

One doctor told me that it can be SUPER hard to diagnose MS (this was just when MRI’s were starting to be used for diagnosis) and many doctors have no idea that their patients may have MS.

I had bladder problems, I still have bladder problems. My balance has always been bad, and my balance has gotten worse throughout the years, especially when I do not get to ride horses! I have always been a klutz as far as athletic endeavors go, especially those that require a modicum of balance. I had started dropping things from my hands (better now), and I had started just falling while walking out of the blue (much better now, I have not fallen for years.)

I have had leg jerks for decades, and my hands also jerk uncontrollably sometimes (usually minor.) My hand tremor is pretty constant though usually minor, unless I drink coffee or if I am really tired, or if I get overheated then it can get a lot worse. I simply cannot keep strong contact, if I try my hands shake uncontrollably and my hands tend to fly off into the wild blue yonder, so I ride with light, light, light contact, I keep my fingers loose and supple and the horses forgive me my hand faults. (My riding teacher says I have excellent hands, if I do it is because I care about the horse’s mouth.)

Since I still have a problem with dropping a rein while I ride the horses and I have come up with an agreement–I school them to ride on a loose rein so they do not feel “abandoned” when I drop a rein, when I do drop a rein the horses check the rest of my body before deciding that I am a hopeless incompetent rider, and end up doing what I want them to do anyway.

Cannabinoids have been an immense help to me throughout the decades, I was essentially self-medicating long before my MS got really bad by smoking grass. The cheap Mexican grass helped me much more (cannabis sativa) than the “stronger” cannabis indica strains. I finally talked my neurologist to prescribe me Marinol (generic Dronabinol) which has reduced my MS exacerbations (attacks) a lot, unless the doctor or insurance company decide that since it is off label that I am an evil, evil person for wanting the only medicine that has actually controlled my MS at all.

I have tried Betasaron, Copaxone (I KNOW I misspelled that one) and Gilenya. With my own personal case of MS all of these drugs caused me to have horrible MS attacks. Marinol is the only doctor prescribed medicine that has helped my MS. Other people have good results with the modern anti-MS drugs, but they just do not work for my body. It took me FOUR YEARS to talk me first neurologist to prescribe me Marinol, and two of my neurologists since then sort of shrug and say that if it works they will continue prescribing it for me. One neurologist however took me off of it, put me on Gilenya with the inevitable (for me) exacerbation, and that horrible neurologist just shrugged it off, in fact he blamed my attack on me reading the little white slip that comes with the medicine. I moved on from that horrible neurologist who was so willing to cripple me to another neurologist who actually listens to me and believes me.

Right now I mostly walk the horses, with a few short trots if I am feeling extra capable that day. On the bright side right now I am riding TWO horses with a double bridle, and these horses have “told” me that they prefer the double bridle to just a snaffle if I want obedience at a finer level.

Your nervous system may be messing up. That in no way means that you cannot ride, I trained up green-broke horses, raised weanlings to breaking to saddle, and reclaimed a ruined horse all while my body was degrading with my then undiagnosed case of MS.

See the neurologist. List ALL your symptoms because a badly operating nervous system can affect your whole body.

And KEEP ON RIDING!!! One time the insurance company had decided that I did not need my Marinol and I had an attack. I showed up at my lesson stable with my son and told my riding teacher that I NEEDED to ride Mia, the elderly Arab mare I was rehabbing then. Walking out to the ring I was moving like a crippled ninety year old woman leaning heavily on my two canes, after 30 minutes in the saddle I was striding forth confidently and I really did not need my canes to make it back to the barn.

My riding teacher KNOWS that riding is good for MS because she has seen me come back from several exacerbations in the past 12 years, and I always walk better at the end of my ride.

Take care. It can get scary. Feel free to contact me.

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