SPMS Work in Progress

[BillD999]

Hello I'm Bill (BillD999), a 63 year old male, diagnosed with RRMS in 2005, which almost immediately transitioned to SPMS. I have been down the road of several different medications, none of which seemed to help me very much. My MRI results have remained very stable since I was diagnosed, but progression has continued unabated, but slowly. I now take Ampyra, high dose Biotin, and follow a strict diet (based on the Wahl's Protocol) and am a great believer in exercise to fight this thing. Still pretty mobile, always looking for new ideas.

[CalfeeChick CommunityAmbassador]

Welcome to the site. I'm sure you'll enjoy meeting everyone. Lots of great folks here to answer questions, make suggestions and discuss life with MS. I'm Lynn, 68, was very active until I got hit with the Mack truck called MS last summer. Still going through many tests to define whites spots in brain, 1 lesion on spine. Dealing with numbness/tingling in legs. Just started gabapentin and it's helping some. Keep on coming back!

[CalfeeChick CommunityAmbassador]

Oh, forgot to say I admire anyone that can follow Wahl's Protocol. I'm doing a modified version.

[GasLight]

Hey, Bill. My name is Christopher (49, PPMS, formal Dx 2015, but symptom onset ~7 years earlier).

Like you, I follow strict diet, and have incorporated portions of Wahls (many elements of her diet were already part of my routine, though).

It's very nice to make your acquaintance. Lots of grand folks around here.

-- C

[jimeka]

Hi Bill, I am from the uk, I have PPMS, I will be honest with you I don't know anything about any medications but I love this forum. There are lots of great people on here with all the different types of ms, so if you have any questions someone is sure to be able to help you. Blessings Jimeka

[Eleyne92]

BillD999 , welcome to the group. I was transitioned from RRMS to SPMS about a year ago. It was a bit of a downer, but not really surprising. I haven't had a relapse in more than 5 years, my MRIs are unchanged, but I'm still in a slow decline. I'm on gilenya and Ampyra, and a physical therapy/exercise program. My neurologist is following me closely so if things start getting worse we can get more aggressive. Right now, I find that keeping up with my exercises is the most beneficial thing I can do for myself. That and staying positive.

Again, welcome

[WAshingtongirl in reply to Eleyne92]

Like Eleyne92 , I was told I am now SPMS last year. I wasn't surprised due to the progression, but I still wasn't prepared. I didn't cry when I was diagnosed decades ago, but did when My neuro told me I was SPMS. But I've come to realize a 'name' doesn't change who I am or what I have.

I am not on any particular diet. Trying to eat healthier and exercise more. Mostly, I find that rest and reducing stress helps me the most. And keeping weight off is important as my legs are weak and can't carry additional weight.

Welcome to the forum BillD999 . I've made many friends here while learning more for myself and sharing my own experiences with others. I hope you feel our warm welcome.

[agate]

Hi BillD999,

I was diagnosed with MS in 1980 but at that point it was SPMS. The RRMS must have happened about 1961 but nobody knows for sure. I'm still alive and kicking. Maybe not kicking, exactly, but I can still walk a few blocks with a walker and inside I usually walk unassisted since I live in a very small place. Mostly I sit in my wheelchair, which I also use for distances. I'm also diabetic (type 2) and have to watch my diet carefully. I'm not on any particular diet but have been lacto-ovo-vegetarian for about 30 years now. I count calories every day, weigh myself often, and watch the intake of potassium, sodium, protein, fiber and fat particularly. I took Avonex for 3 years and Copaxone for almost 3 years but I couldn't see that they were doing anything for me. Glad you're trying some of the new ideas like Ampyra and Biotin.

[Raingrrl]

Hi BillD999 ,

I was diagnosed with RRMS in 1999. My neuro at the time believed I had likely had MS for 10 or more years without knowing it. Was on Copaxone for years until I stupidly took a break and caused myself my one and only major flareup. I paid a big price for this because it brought on Nystagmus that affects me daily. I went back on Copaxone until it stopped working and my neuro switched me to Tsabri.

I need to work on my diet but don't think I can tolerate some of the recommendations of Dr. Wahl. I commend you for sticking to the Wahl plan. Right now I'm temporarily living with family so can't clean up my diet the way I want until I'm back in my own place again.

[BillD999 in reply to Raingrrl]

Hi @Raingrrl, the Wahls diet is challenging but might not be as difficult as you think, especially if you work into it gradually. No gluten, no dairy, low carbs, lots of veggies are the main themes. Many people get discouraged when they don't see results right way, it does take patience. We are so used to lots of carbs & sugar in our diet it is a bit of an adjustment. I would also recommend high dose Biotin if you have not tried it. I take 300 mg(milligrams) a day per my Dr.

Good luck!

[erash]

Hi BillD999

So glad you've joined our little chat room. I read your other post about Wahls. How much biotin are u taking? What do you think is giving u the most benefit with your mobility?

I have asked my neuro how u can tell if you are now SPMS and although we agree that this is where I currently am, she says that the current thinking is that the definitions of RR sp and PPMS are now blurring.

[BillD999 in reply to erash]

Hi @erash, I take 300mg(milligrams) of Biotin a day per my Dr's recommendation. I have definitely seen some improvement from this. It takes a little time to kick in. The only other thing that has helped at all is Ampyra. I also take a number of supplements, too many to list. As far what helps the most I would say exercise itself, atrophy is the curse of MS. I walk every day even though I cannot walk very far and get very fatigued. I also do yoga & some work with weights.

I would agree that the difference between RR and SP can be hard pin down, but well defined relapses are pretty clear as you must know.

Good luck!

[erash in reply to BillD999]

Thanks! BillD999

Fortunately I've exercised since I was very young and continue several hours per day. I also attribute this to my continued mobility.

They denied me ampyra b/c of childhood febrile seizures and biotin interferes with my Tegretol. But I do (kind of) follow Wahls for almost 1 yr now and do feel better.

It's good to hear that you (others) are getting benefits. Keeps me motivated 😊

[BillD999 in reply to erash]

Hi @erash, sorry about the delay in replying. Is Tegretol something you take for pain? The reason I ask is be cause I am having some trouble with sporadic nerve pain, which has been going on for a while but getting a bit worse. Just wondering if that was an effective treatment. I did take an antidepressant drug (name escapes me) for the pain for a short time but I did not care for it and stopped. I'm sorry that you're unable to take Biotin, I see real benefit from that and would be very reluctant to give it up. Pain's not that bad yet but there are those days. I saw your post about the PBA, very interesting. I don't know much about that but would be interested in learning more abut the project. Stick with the Wahls, I think you will find it worthwhile.

[erash in reply to BillD999]

BillD999

Oops! I see we've chatted about Wahls before...I forgot 😳

I take Tegretol to control trigeminal neuralgia TN pain. It's essentially the gold standard for treating TN (also known as the suicide disease because pain is so horrible). I am concerned that high doses of biotin would interfere with the effectiveness of the Tegretol and I don't want that pain to come back.

Tegretol is not usually used to treat other neurological pain. More often used are gabapentin, Lyrica (pregabalin), Cymbalta, amitriptyline, and a number of others...

All have side effects🙁 Most become more tolerable with time. Definitely a balance b/w pain control and med side effects 😬

I have other neuropathies but choose not to treat them because I don't want more meds.

Life is all about choices 😊

[Jesmcd2 CommunityAmbassador]

Hi BillD999 and Welcome to our Wonderful, Outstanding, Informative, Friendliest and most Supportive Site of All Time!😁 Have l sold you yet?. Hope so.😅

Sounds like your doing pretty good on this roller coaster ride. And that's Great! A few people on here follow or try to follow the Walhs diet. From what l understand it's not easy.

I was only dx'ed OMG it will be 2yrs next month. (And now lm going to be sick) lm still having trouble with that sry.😞

Anyway, please feel free to look around and jump in at anytime! Everyone's input is important! And here, we are all in the same boat. We might not be where you are, or have the same systems, but we "get it" and odds are someone here HAS had something similar.

~Helpful Hint~ If put an @ in front of the person who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

Jes🌠

[BillD999 in reply to Jesmcd2]

Hi @jesmcd2 Thank you for the greeting. This is definitely a roller coaster we're on, some highs, many lows. It sounds like it's still fairly early in the process for you and from what I have learned being as aggressive as possible in whatever treatment you choose could make a real difference early on.

Wahls diet is challenging but mainly because we are so accustomed to consuming lots of carbs and sugar. It gets easier the longer you are on it and the cravings die down. I believe it has helped me.

[Jesmcd2 CommunityAmbassador in reply to BillD999]

Very early on for me BillD999 as there were no signs or symptoms before it kicked my @** !

I take Copaxon 3xs a wk and besides a cpl relaspe's of optic neuritis, which l didn't know what it was😁 l do the best l can! Some days are always better than others ☺

As far as the Wahl's, if was fruit l could do it, but l really don't do alot of veggies. But l give you tons of credit though ☺

Jes🌠

[Morllyn]

Sorry about the MS but welcome to the group.

[Karen-x]

Welcome Bill! You sound like a fighter. This group is a great place to meet wonderful people and get new ideas!

[greaterexp]

BillD999 , I'll add another welcome! I hope you find this group to be the wonderfully warm and helpful site that I have.

I can't add much information-wise. I was dx'd this last September with RRMS, after having what was probably a CIS about 20 years ago and some mysterious symptoms here and there through the years. Though I should be over this relapse, every day is an adventure with symptoms. I got to start Copaxone 40mg very recently and just pray I haven't already transitioned to SPMS. Time will tell.

In the meantime, I find great encouragement and information here.

[howard0425]

Hi Bill, I'm Howard. IU was diagnosed with PPMS in 2008. I have been in decline ever since although it has been slow. I can still walk a few steps but I spend most of my waking day in my power chair. I am only on symptom drugs. I take Baclofen for spasticity, Ampyra for walking and Vesicare for urinary problems. I also take LDN and Biotin 100mg. Everything else I take is a supplement. Welcome to the "club". Nobody wants to join it but everyone is accepting of new members. Hope to hear from you again.

[Fancy1959]

Hello BillD999, I'm Fancy1959 and I would also like welcome you to this awesome chat room. You have found a safe place to come ask questions, share concerns, or just seek information. This chat room is full of some of the friendliest, kindest, most caring, and compassionate people I have ever met all bound together in our battle against this monster we call MS. I I to progressed from Relapsing and Remitting MS to Secondary Progressive MS last year. Early this year, after a disastrous visit with my neurologist, i sought out and have set up an appointment with a new neurologist. I am anxiously awaiting the March introduction of the new therapy Ocrevus, the first MS therapy targeted specifically for Progressive MS.

I too have found exercise and physical therapy to be very beneficial to my MS even though it continues to decline. A huge part of the battle is keeping a positive attitude and fighting everyday to beat the monster. Make sure you surround yourself with positive support, positive doctors, and caring and loving family and friends and you can do great things. I would like you to remember one thing and that is....Together we are stronger!