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My son had a wierd sudden onset of right foot drop, ie couldn't raise his foot to walk or drive. Followed by lost finger grip and finger movement.

They began Lyme treatment with no positive response, lots of tests, MRI showed spots of MS like lesions. They are doing a lumbar puncture to confirm.

Anyone familiar. We are new to this and exploring

Aw shoot. I used to work with a young guy - is classroom was right next to mine - and he was diagnosed in his mid 30's. I also worked as a waitress with a woman diagnosed in her late 40's, and swim with a woman about 65 who has it and it is pretty pronounced.
Mike didn't slow down until the condition walloped him, and the doc warned him that might happen. My waitress friend has been handling it well for 20 years now.
They're making great strides in conquering this and coming up with a great assortment of drugs to treat it. Good luck!

I've had it for....25 years? I'm very fortunate. I've never had a lumbar puncture, lots of MRIs though.

Sorry to hear this Chisamba. I only know that there are better treatments etc thesedays but I just want to say thoughts with you and your son.

I have two people in my life with it. It seems to strike people in different severities. I hope you get some good answers and that things go as well as possible.

Quelah wrote:I've had it for....25 years? I'm very fortunate. I've never had a lumbar puncture, lots of MRIs though.

Do you mind if I ask questions as they come up?

I'm so sorry to hear about your son. I would strongly suggest to use the 'MS' forums to be in touch with other patients and medical professionals. You will learn much about symptoms, dx and treatment options. I've seen medical news articles referring to new treatments too. There are several of these forums to investigate your preference. Frankly, when I had an illness in the past - I found those patient-medical forums far more helpful than my doctor and nurse staff. Best wishes

https://www.abovems.com/en_us/home/livi ... lsrc=aw.ds

https://www.healthline.com/health/multi ... /ms-forums

Chisamba wrote:

Quelah wrote:I've had it for....25 years? I'm very fortunate. I've never had a lumbar puncture, lots of MRIs though.

Do you mind if I ask questions as they come up?

Please do! Happy to help any way I can, I know it can be a scary time in the beginning.

I was fortunate in the very beginning to have a WONDERFUL neurologist. He was like a cross between Abe Vigoda and John Cleese. I remember a few years in, when I broke my back and I came in wearing a Jewitt Brace (full body brace spine stabilizing jobadealie) he looked at me over his glasses and said "My MS patients don't generally get traumatic spinal fractures, you ARE the poster child for that drug!" What he meant was his MS patients usually weren't out doing the kinds of things that result in that degree of trauma, like riding half broke draft horses in the winter!

I'll share what he told me early on, I found it very helpful. He said "do not go searching on the internet, it will only frighten and depress you. Do not go to support groups, you are in much better shape than most, again, it will frighten and depress you. The placebo effect is greater with MS than with any other disease. Be mindful of your mindset."

And so, that day, I decided to be happy about it. When it initially started I thought i had a brain tumor or something, so the MS diagnosis was kind of a relief.

Mine started with optic neuritis. I went gradually and then completely blind in one eye, for about 30 days. Then it went away gradually. Things come on much faster than they go away, so know that. This was pretty classic presentation for onset of MS. Female, early 20's, northern european ancestry, initially exacerbation (that's what flare ups are called) coming on the heels of period of extreme stress. Stress, heat, and fatigue are not friends to MS. That said, i live in hot climate on horse ranch. Vit D is your friend. Supplemental Vit D is good, a shit load of it. That might be different for a young man, but talk to the neurologist about getting his Vit D tested. They generally want significantly higher levels in MS patients.

The next year, I lost fine motor control and most sensation in my right hand, same thing, came on fast, took about a month to go away. I couldn't hold a pen to write, but if I could get ahold of something, like a lead rope, I was still plenty strong.

Knowing how long it takes to go away is very helpful. M lost use if his right hand and foot. He has no grasp and cannot raise his toes to walk. First symptoms. So they checked for syphilis, Lymes, etc. I will admit MS was an unexpected and unwelcome diagnosis. My son has become optimistic and it really helps to.know that recovery after exacerbation takes time.

I'm not a doctor and don't want to seem like I'm playing one, but usually pretty whopping dose of steroids (IV prednisone infusion) is treatment for severe or early exacerbations. I've lost track of how old your son is, I know docs can be hesitant to use steroids on still growing people. DH's nephew, when he was diagnosed properly with Chrohn's disease, I took him to see head of Pediatric Gastroenterology , was 17 at the time. Doc did now want to blast him with steroids because he was still technically a child. He was able to achieve remission through prescription diet.

I'm a bit out of date on drugs, but I would ask neuro about Betaseron. It used to be (may still be) the gold standard for relapsing remitting MS, which if your son has it, I hope it's that kind, cause if you're going to have it, that's the best kind. It's not a steroid, but it is a shot. But it's a tiny (1 cc) subcutaneous shot, it's either every other day or 3 days a week. It's very good for the early days of MS (it's what I was taking when I broke my back!).
It comes with a "gun" a little device you stick the syringe in and then you just press it against your skin in the right place and push the button. It's better to have someone else do it some times and in some places (you rotate injection sites) but you can do it yourself. I find it helpful to have a candy bar afterward, or whatever a favorite treat is. Its the rewards for getting the shot, it really does help.

Also tell your son that at least in my experience, the exacerbations in the early days are most severe and over time they become less so.

ALSO, MS drugs are CRAZY expensive, except for prednisone, which is cheap. This is because not enough people have MS to spread the cost out. And because most MS drugs are injectable which are covered less by many insurance companies. Don't freak out. IME, every single single relevant drug company has a copayment plan. They WANT you to take their drug, they know most people can't afford a thousand dollar a month copay. They will have a program where they will take what they can get from your insurance company, and they will eat the rest of it. Betaseron does, and Copaxone does, I don't know about Avonex, I've never tried it because it's an IM injection and I'm too much of a needle sissy for that.

sending you mega jingles

Mikhail is 22, he got three days of iv steroids and is not on oral, large dose, tapering every five days. the neurologist spoke about using Tecfidera, a twice daily oral tablet. we go to see him in two weeks. I am very happy to know that the early exacerbation is worst, poor Mikhail is in an AFO boot and using a left hemi walker to get around, his right hand does not work and his right foot does not work. despite the steroids, Mikhail is not get showing signs of improvement. this is depressing him a bit.

i really really appreciate all the information, please feel free to keep it coming

Nothing to add except so sorry that you guys are going through this. So worrying and difficult. So sorry.

Healing prayers coming for Mikhail.

Catching this early will hopefully get it to relapse.
I have a dear friend with it she has had it for many years, and gives herself injections. She had early symptoms, but choose to ignore them. She is doing very well, and is very active which I think helps her.

As for the cost of drugs, yes she said they are very expensive, but the MS society has a program she uses for reduced costs to zero cost for the drugs.

Hugs to you and your family..

I am so sorry you and your son are going through this, Chisamba. I pray you and Mikhail find your way through this. Just remember, It is a chronic, life-time disease that waxes and wanes and will drive you and your son crazy sometimes. (((((()))))))

Jingles for Mikhail and you and your family. I hope he starts seeing improvements soon!

This medication was just advertised on TV.

https://www.gilenya.com/c/multiple-scle ... swodHCYNCg

Montel Williams has it, I've seen him on Dr Oz talking about what he does to combat the disease thru diet, exercise and a few other things that are working for him.

He may have something on-line that goes into more depth.

There is no diet that supports or prevents MS, there are some vitamins that should be taken.

Diet is a huge control and placebo. Not gaining weight and trying to stay fit are good, but right now M cannot use about half of his body so I'm going to try sigh up for a gym that has a pool

I don't have any medical advice or personal experience. But I am so sorry you and your son are dealing with this. I know people who are living well and managing their MS and i know for many the first flair is the worst/most challenging.

Sending you both jingles and hugs.

Jingles for you both.

As for the gym with pool, check out if any of the physical therapy businesses have a pool. I did pool therapy with physical therapy and it was wonderful.
I would think directed exercise in the early phase would be helpful. Or, if any of the pools have a physical therapist on site. A couple of our gyms have physical therapy businesses in the gym building.

{{{{HUGS}}}}

Susan

No info from me, Chis., but please know that more jingles are being sent for you all. Glad the horses can give you a little break from this new life twist and challenge.

Chisamba, I've been wondering... How is Mikhail doing?

They exacerbation receded and he is on Tecfidera to reduce further exacerbation. He is riding and going to college, thank you asking.

Oh yay! I'm so glad to hear that!

Thanks for the update. Glad he is great improved

I’m very happy to hear this update! I’ve been wondering how your son was doing but hesitated to ask. A close friend has MS but is lucky enough to have been in remission for the last several years.

That is good to hear, Chisamba!

Good to hear he's doing ok, Chisamba.

Thank goodness he can use his leg normally enough to run. Has some dexterity that didn't return to his hand like shuffling a deck of cards