Hereditary Spastic Paraplegia type 7 treatment with no medication

I was diagnosed with Hereditary Spastic Paraplegia (HSP) type 7 in April of 2013 but have been managing it well with a proper diet, good exercise routine and a lot of support!

Written by JCB267, published over 3 years ago.

Hereditary Spastic Paraplegia type 7 treatment with no medication

On April 11, 2013 I was diagnosed with Hereditary Spastic Paraplegia (HSP) type 7. The prognosis wasn't great; there is no cure only treatment of the symptoms but it could have been worse! The symptoms progressed slowly – in the future I would have an increasingly difficult time getting around, my legs would be sorer and my lower back would continue to ache. It was a long time coming though, I had been going to several different doctors over the previous 6+ years and none of them could give me a definitive diagnosis. Now I had one!

I was prescribed the anti-spastic drug Tizanidine to reduce spasms in my legs and make it more comfortable to walk. It was also suggested that I begin to take different vitamins/supplements such as Fish Oil, Vitamin C, Vitamin E and Vitamin B-12. I began taking the prescription and vitamins immediately.

I figured that the doctors determined what was wrong and that I would take some medication and be all better. So I thought…..the medication made me extremely tired, I had headaches most of the time, felt nauseous and my eyes hurt in the afternoon. Extremely tired puts it lightly, once I get off the train in the morning I have to walk 9/10 of a mile to my office. I was so tired that I could not make the walk without resting. After lunch the headache got worse, the nausea set in and my eyes started to ache. Later in the afternoon, I could not focus well on objects. It’s not that I couldn't see them, my eyes just felt detached like they couldn't coordinate to look at something. I found myself closing one eye to see or blocking it with my hand.

I reported these 3 conditions to my physician and do not recall him reacting at all. The medication seemed to be helping my legs though so I thought that I would just have to get used to it so that I could start feeling normal again. I just felt out of it…. A co-worker once found me walking around like I didn't know where I was. About a month after reporting these conditions to a physician I felt terrible, like I was going to pass out. I called his office and asked to see the doctor; his secretary was very nice and somehow got me in to see him that afternoon. Again, I do not recall him reacting to my report of these adverse effects of the medication. About another month passed by (about 4 months since diagnosis) and I still did not feel very well. I was chatting with a moderator on this website regarding the condition; he has a derivation of the same disease. I told him that I was taking Tizanidine and he told me that the medication was likely the culprit; he had also taken the medication and experienced some negative side effects. He recommended speaking to my physician to see if I could reduce or stop the medication. I did contact my physician and said that I wanted to try managing this condition without medication. He informed me that I did not have to wean myself off of it, that I could just stop taking it. On August 10, 2013 I stopped taking Tizanidine. For the week that followed I felt terrible……I read an article written by a doctor that said withdrawal from Tizanidine could be severe, that if taking it and you would like to stop that you should slowly wean yourself from it or you risk severe reactions including death, heart attack or stroke!! I emailed that to the physician that told me I could just stop taking it asking him if I should be concerned about it, I guess not, he never answered me…….

I stopped taking the medication on August 10, 2013. On August 11 my wife participated in a Spartan (a series of obstacle races of varying distance and difficulty ranging from 1 mile to marathon distances) race in Amesbury, Massachusetts. I recall that I did not have a great time and was not in a good state of mind. Worst of all I did not really support my wife much at all, my biggest supporter.
I did not feel too good during the first week off of the medication but near the end of the week was starting to feel better. I could make the walk into work (only 9/10 of a mile) to work without stopping! I started going out at lunch taking walks. I realized on one of the walks that I had a great family at home and I was not really enjoying them at all!

Slowly my walks increased, I remember the first one was 1.5 miles, then 1.8, then 2.0, and so on. I got up to 3.5 but had to find alternative ways to exercise; I live in New England and it is getting cold! I could go longer but I cannot leave work for a couple of hours to do it! I consulted an exercise professional and incorporated a lot of stretching into what became an exercise routine. As I got stronger, he helped me to incorporate other exercises and stretches geared to people with neurological conditions. After about two weeks of walking and stretching, I again consulted an exercise professional and on his recommendation incorporated some push-ups and sit-ups onto my routine. After approximately 2 weeks of that I stopped doing the push-ups and added in some light weight lifting. Now when I wake up in the morning, I stretch for 15 – 20 minutes then exercise on an elliptical trainer for 45 – 60 minutes each morning. When I am done exercising I stretch for another 15 – 20 minutes and then rest while eating breakfast. As it is today, merely 4 months with no medication, I get up and exercise 7 days a week but it is not like exercising, it is like therapy. The muscles in my legs feel much better and stronger than they have in years.

Approximately one month after stopping the medication and at the recommendation of the exercise professional, I met with a nutrition professional who assisted me to investigate my diet. Stopping the medication definitely made me better and allowed me to start exercising but I still felt there was room to improve the way I felt. I also know from seeing several neurologists over the years that you can eat and take supplements to help to improve your neurological health. I also read a very inspiring story about a Dr. Terry Wahls, a clinical medicine professor at University of Iowa Carver College of Medicine in Iowa City, Iowa. Dr. Wahls has secondary progressive multiple sclerosis and was not in great shape. She had to use a tilt recline wheelchair because her abdominal and back muscles had weakened so much that she had a difficult time sitting upright and she could hardly walk. There is a picture of her in her wheelchair in 2007, then there is another picture of her out riding her bicycle a year or so later! She accomplished the majority of this through altering her diet and exercising. I thought if she could do it why couldn't I??

My diet largely consists of Greek yogurt and fresh berries for breakfast and a cup of tea (after exercising) or multi-grain toast; a plum, apple or grapes for a mid-morning snack; a salad with cran-raisins, sliced almonds, a protein source (beans, canned chicken or tuna), shredded carrots or broccoli-slaw and some low-fat or fat-free dressing; a banana or pear for afternoon snack; pear or grapes later in the afternoon; eggs (something fast, kids after school activities take up a lot of our time!) for dinner and some almonds for a snack. I also drink a lot of water each day – between 128 and 160 ounces. In the past, if I heard that a supplement was good for neurological health, I tried it. I recall one day when I met with my nutritionist friend that I complained of increased heartburn. He recommended that I stop taking the Fish Oil and see if it improves. It did and on his recommendation I eventually stopped taking all supplements with the plan of adding them back one at a time to see which ones help. I got that down to taking a Probiotic and Vitamin D in the morning then in the afternoon, I took 1 B Complex tablet. I certainly felt better and saw the benefits of eating better but I still felt there was room to improve.

I noticed that I was feeling a lot better but was extremely tired. I felt very good when I woke up and had no problem exercising but within 45 minutes of exercising I got very tired. The tiredness increased throughout the day and I found myself having to go to bed by 9:00 p.m., I just couldn't keep my eyes open.

I spoke with my Uncle, who is extremely educated about diet and exercise, and told him that I was really tired in the afternoon – after exercising and going through a “normal” day. I told him my routine and diet; he recommended adding protein to my diet and possibly taking a good natural multi-vitamin. I heeded his recommendation and added protein shakes in the morning and a protein source (tuna or beans) to my salad and eat as often as possible another protein source for dinner, like chicken or fish. I stopped taking the supplements I was taking and started taking a multi-vitamin only.

I take no medication at all, eat a good diet and exercise regularly. I am fortunate enough to be able to have access to the resources required to follow a strict exercise routing and alter your diet. It is also extremely important to have a good, solid support system around you including food availability, exercise resources, family and friends. I am lucky enough to count as my good friends and co-workers the “exercise professional” and the “nutrition professional” that I refer to. It is very helpful that we share interests and just enjoy each other’s company – well at least I do, I can’t speak for them!! It is very important to have a good supportive family. I am very thankful for the outstanding advice I get on an on-going basis from my Uncle. Lastly, I am extremely fortunate to have a great wife who holds everything down at home and wonderful children, they support me all the way and I would not be able to accomplish anything without them!!

Written by JCB267, published over 3 years ago.

31 comments for «Hereditary Spastic Paraplegia type 7 treatment with no medication»

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  • isberm | published over 3 years ago | Originally written in English

    Very interesting and great progress! I was also diagnosed with SPG 7 in April 2013 and have found exercise, chiropractor and yoga very helpful. If you are intersted, please contact me. MikeI

  • formerEURORDISstaff | published over 3 years ago | Originally written in English

    Hi John, Hi Mikel,

    Rob from EURORDIS here. Thanks for writing and posting.

    You can send private messages to another member, but you have to be "Friends" first. Send a friend request from the person's profile page. After they accept, you can send a private message from the profile page.

  • isberm | published over 3 years ago | Originally written in English

    Thanks Rob. I have.

  • JCB267 | published over 3 years ago | Originally written in English

    Thank you Rob and Mike! That works well, I sent a message to Mike just now!!!

    Thanks again.

  • Miljenko | published over 3 years ago | Originally written in English

    John, unfortunately there is no treatment to heal HSP, and only medication doctors could give you are those that work on fighting spasticity.

    I'm on 3 × 20 mg baclofen (lioresal) daily. Neurologist which diagnosed me with HSP has prescribed me with 3 × 25 mg, but I started taking it first week 1× 5 mg, second week 2 × 5 mg, third 3 × 5, and after more then a month I was on 3 × 20. I found that 3 × 15 works just fine for me, but ended on 3 × 20 mg, on advice of my local neurologist.

    If I would follow original advice to take 3 days 3×5 mg, then 3 day 3 × 10, until I reach 3 × 25, I would definitively quit taking it. At the beginning single daily dose of 5 mg lioresal was killing me, but my other neurologist told me how to introduce it without troubles (as I stated before).

    Doctors don't know the dose that suites you, and you are the one who have to find dosage that helps you fight spasticity, but doesn't make you legs weak or affects you with side-efects. Even now, after 3 months on lioresal I sometime notice breathing problems or irritable cough, but I live with it.

    If you could manage you daily life without anti-spasticity drugs is good for you, but unfortunately as the disease progress you'll have to consider using drugs (I wish you won't need them).

    Healthy diet reach in vitamins and minerals may help, but it won't cure you. Some studies on MS patients show that for example Swank diet helps fighting it, while other didn't found it helpful. Same thing is with treatment of MS with bee venom.
    You may read http://www.dailymail.co.uk/health/article-... where guy says that he cured himself by changing diet. He says that he was eating junk food for years and that changing diet helped him. But, what about those of us who eat healthy food whole our lives, where all fruit is organic, people produce their own yogurt, and know how they feed their cattle...........healthy diet will definitively help you, but it's not so crucial. Until Dr. Terry Wahls diet goes through thorough studies, it will be a seam. Personally, I don't like getting into something that, even for smallest information ask you to buy authors book.

    In abstract of a study Bass et al. "Tizanidine versus baclofen in the treatment of spasticity in patients with multiple sclerosis" is stated:

    "Tizanidine (Sirdalud) was compared to baclofen (Lioresal) in a randomized, double-blind, cross-over trial. Each medication was introduced over a three week titration period and then maintained at the highest tolerated dose for five weeks. The two treatment phases were separated by a one week drug withdrawal and a two week washout period. Sixty-six patients entered the trial and forty-eight completed both treatment phases. At the end of the trial, neurologists and physiotherapists thought that baclofen was superior on the basis of perceived efficacy and tolerance (p less than or equal to 0.05). Although the efficacy of tizanidine or baclofen was judged as good to excellent by 24 and 39% of patients respectively, this difference was not statistically significant. Muscle weakness was the most common adverse effect. This was significantly more troublesome in patients treated with baclofen. Somnolence and xerostomia were more common in patients treated with tizanidine. Both baclofen and tizanidine appear to be useful adjuncts in the treatment of spasticity in patients with multiple sclerosis. Preference of either drug is tempered principally by side-effects."

    If one medication doesn't suite you, ask your neurologist to replace it. Without medications, in reality, you are at the same stage you were before you were diagnosed with HSP. Is good physiotherapy and healthy diet all what you lacked before? If it's true, then good for you!

  • isberm | published over 3 years ago | Originally written in English

    I started limping 20 years ago and agree there is no cure, nothing will change the results of the blood test I received this past April, but I have made progress improving in some areas, not all. With me I am always looking for something to help. John has given me information on diet which I have discussed with my Naturalpath and he has strongly recommended. Fingers crossed.

  • Miljenko | published over 3 years ago | Originally written in English

    It is the same situation with me. My early symptoms appeared almost 25 years ago, but more affecting problems maybe 2-3 years ago. I have preliminary diagnosis for HSP since September this year, and didn't have DNA testings yet. There are certainly some supplements that help (or make you believe that they help). I've introduced into my diet stuff like B-complex, omega-3 or cod liver oil (vitamins A, D,E), magnesium ... Fingers crossed.

  • isberm | published over 3 years ago | Originally written in English

    I take some (small swig) maybe 2000 mg of extra virgin olive oil, a multi vitamin and additional vitamin D each day. I have never noticed any change in my movements from these but I believe my general health is better, and if I am tired, those are my worst days for moving. So I am hoping if I keep my health up, it improves my energy, and improves/maintains my ability to move.

  • anond769b720 | published over 3 years ago | Originally written in English

    I also have SPG7. This gives me many ideas. Thank you so much for sharing
    .

  • JCB267 | published over 3 years ago | Originally written in English

    Hi Joy13 -

    I am really sorry to hear that, it stinks to have to deal with. For me, the diagnosis was a long time coming - I was going to the doctor for nearly 7 years before they had a definitive diagnosis. How long has it been since you were diagnosed?

    Now you just have to deal with it and get on with your life......In my opinion the best way to accomplish that is through a good anti-inflammatory diet and exercise. I have to outstanding resources for that, they are named Jerry and Jose. Jerry is the exercise person and Jose is the diet person. They helped me figure out what I need to do to customize a diet and exercise plan tailored to people with neurological issues. If you would like more information, please let me know and I will pass it along to you.

    Hang in there, Joy!

    John

  • anond769b720 | published over 3 years ago | Originally written in English

    I was lucky John. My diagnosis took about 8 months after I got relentless about it. I saw many doctors for a few years before then, because I suspected something. No one really impressed me back then, so I just gave up until it started interfering with my job of 22 years and some documentation was needed for work. I finally came to a neurologist that suspected HSP. He confirmed it with genetic testing. Now here I am, retired on disability, not knowing what to do with myself. I've been exercising, but not eating right. As you can guess, I'm bored and have gained weight. Your story was inspiring and had many good ideas.

  • JCB267 | published over 3 years ago | Originally written in English

    I know it is tough, Joy. Don't let this get you down though. I can certainly understand the depression though but it sounds to me that you have already surpassed that. Now, you just need to take your life back! If you can, I would urge you to try to exercise more rigorously and start dieting, it has helped me immensely!

  • anond769b720 | published over 3 years ago | Originally written in English

    Good advice!

  • JCB267 | published over 3 years ago | Originally written in English

    Hi Joy -

    How are you? Hope everything is going well
    ...
    I tried sending you a message but believe you have to confirm your email address?

  • anond769b720 | published over 3 years ago | Originally written in English

    Done. Hope this helps.

  • jacolinesteegstra | published over 3 years ago | Originally written in English

    Thanks for sharing this story. I was diagnosed with HSP after 3 years of searching. It is a diagnosis by exlusion so they still did not find the defect gene, but the symptoms are very clear: hyper reflexia, stiffness, difficulty walking and keeping my balance.

    In 2011 I stayed in a rehabilitation centre for 2 months to learn to cope with the chronic pain. After that I have put myself on a 'maintenance dose' of excercise and physical therapy. I swim once a week (extra warm water), I try to take a daily walk of 25 min and noticed that bit by bit I can walk a little further and I have physical therapy 1,2 x a week.

    I also eat as healthy as possible. Focus on vegetables and whole grains, taking vitamin B complex, vitamin D during winter and avoid junk food. It is hard to accept that there is no cure for HSP and that in spite of all the works I put in there is not a real progression, but to me: staying at this level is also progression.

    Thanks again for you inspiring story.

  • JCB267 | published over 3 years ago | Originally written in English

    Hi jacolinesteegstra -

    It is a very difficult thing to live with, at times I am just amazed that with today's advances in medicine and technology that there really is no cure!

    I think that you have to accept that and do things to mitigate your circumstances and it sounds like you are doing just that. I have found that medicine (I tried tizanidine) is not as effective as exercise, stretching and diet.

    Like your situation, it took the doctors a long time (almost 7 years) to figure out what was going on with me. At one point my PCP wanted me to take anti-depressants....I can certainly understand that if I exhibited signs of depression, but I did not. I was told that it would "help" manage my anxiety toward my neurological condition. I told the doctor that I would not take them, I wasn't anxious, I survived boot camp, ran a marathon and used to do triathlons and was now having a hard time walking and balancing.......I found a new doctor!

    Hang in there and keep up the good work!

  • katherinehaigh | published over 3 years ago | Originally written in English

    was so interested in all of you. I have spg11 does anyone have that? I have had it since birth but it really didn't show signs till I was 16 am now31. things have gotten worse the last couple yrs but I am also trying to go off some of my medicine always so tired and dizzy lately. how do u find the right person for your diet? right now I use a walker and also wheelchair would love to get strong enough to walk on my own. had to stop working etc. any help would be great! thank you

  • JCB267 | published over 3 years ago | Originally written in English

    Hi Katherine -

    I read in my records that I have an abnormality on the SPG11 gene too. I don't really know what that means, but I will ask the neurologist and find out!

    What area of the country do you live in? I live in Boston and have two outstanding resources for diet and exercise. I know that they can help you but understand that the distance may be a problem too. I am sure they work with someone in your area though. I will send you there information separately. I will send you a friend request here then we will be able to send each other private messages.

    You are definitely searching in the correct area in my opinion! With a little hard work through exercise and diet I think you will be able to rely less on the walking aides you use!

    Hang in there!

  • JCB267 | published over 3 years ago | Originally written in English

    Hi Katherine -

    How are you doing? Feeling better, I hope!

    I did talk with the doctor, there is no issue with my SPG11 gene. It was an error in the report! They are fixing it though......

  • mirellabioletti | published over 2 years ago | Originally written in Italian

    My name is Mirella.

    Can you please send the detailed information on the exercises that you are doing? Because my husband, after many negative experiences, is not very keen on going to neurologists and physiotherapists. So, I have to handle everything myself, and he works and walks with a cane in public, but when no one sees him he manages without the cane.

    He has good resistance and has less problems! I was heartened by your speech and I would like to try to imitate it. I leave my email also, if you could kindly send me some more detailed information on the exercises for my husband to do as well. For the time being my husband does not take any drugs and I think if it may be possible to go on like this.

    Thanks

    mirellabioletti@libero.it

    Notice: This text content has been translated automatically by a third-party service.

  • JCB267 | published over 2 years ago | Originally written in English

    Hi Mirabella -

    I will send you an email too. I dislike neurologists too, I have had several negative experiences, no one knows you or your body better than you.

    John

  • mirellabioletti | published over 2 years ago | Originally written in Italian

    Thanks John, I would only need it if you could send me in Italian gymnastic exercises the rest of your emails are able to translate a little bit of English I chew, or better yet via email if you can send me a video of the exercise you perform on a daily basis. thank you very much

    Notice: This text content has been translated automatically by a third-party service.

  • JCB267 | published over 2 years ago | Originally written in English

    Sure, Mirella! I am away through the end of the week and will put together a detailed email of the exercises and send them to you over the weekend.......

  • mirellabioletti | published over 2 years ago | Originally written in Italian

    THANK YOU VERY MUCH GIOVANNI! I'm waiting for your email

    Notice: This text content has been translated automatically by a third-party service.

  • JCB267 | published over 2 years ago | Originally written in English

    Hi Mirella -

    I apologize for taking so long......I have finally gotten the exercise document translated, I will send it to you via email.

    John

  • emily | published about 1 year ago | Originally written in English

    Thanks for the info. I found Vitamin D to be a great vitamin too, along with coconut oil and green tea. I also read lavender oil (in a diffuser) can help with the spasticity. I haven't tried it yet, but it's on the way via Amazon.

  • Janetspe | published about 1 year ago | Originally written in English

    Hi John,
    I am interested in hearing more about your diet and exercise plan. I have sent a friend request. I am 45 years old diagnosed with HSP. I am on my second set of gene testing looking for a match (still waiting on 2nd set of results). I have been prescribed bacolfen but would rather try to take another approach as you have. I have a 10 year old son who is currently being monitored for HSP symptoms at Mass General Hospital. Fingers crossed nothing to date!! I stay active but find myself being my own worst enemy when it comes to eating right and exercising. I am becoming increasingly scared because I watched my father die of this awful disease 3 years ago and now my uncle is close to that as well. I need to act now to slow the inevitable and would appreciate looking at whats working for you without medication.
    Thanks so much!

  • JCB267 | published about 1 year ago | Originally written in English

    Hi Janet -
    I have really had a lot of good luck with diet and exercise. I must say that I have not been great on my diet all the time but by not sticking to my diet all the time I can certainly see the benefits of it. Initially, I was prescribed Tizanidine and tried Baclofen. Neither of them worked particularly well and made me really tired. I knew I should be stretching and exercising but couldn’t because I was so tired. Then I started to follow Dr. Terry Wahls (http://terrywahls.com/). She succeeded in fighting her disease by altering her diet. So I figured I’d give it a shot. I stopped taking all medications and started eating better – I ate gluten free, I ate salads a lot (usually one per day), ate a lot of fruit (each day I consumed raspberries and blackberries for breakfast, a banana, an apple, a pear), I drank a lot of water (about 1 gallon a day). I was really amazed at how much more energy I had and how much better I felt. I slowly began exercising first by doing the elliptical trainer, then taking walks and lifting weights. As of today, I still stick to the same diet, it’s hard though, and I’ve had some slip-ups but am still alive! I still do exercise, though not nearly as much. I still try to get on the elliptical a few times a week and take walks but its winter now and I don’t get outside much. I really don’t lift weights at all any more, it really hurts my back! I have noticed recently that it is getting harder to use the elliptical at the intensity I used to.
    I honestly think that you should try going with no medication a shot and increase your exercise and try to diet! There are just too many nasty side effects to medication…. It’s worked really well for me.
    I am seen at the MGH neurology clinic also. Who do you/your son see there?
    Keep fighting hard!
    John

  • Janetspe | published about 1 year ago | Originally written in English

    Thank you John. This is great information. We all know what we are supposed to do and how often but it doesn't always happen like that. Winters are tough and getting outside with the fear of falling has become increasingly difficult. This year I am determined to get some skiing in. I have skied for years (never getting that much better), but last year I struggled trying to get up after falling. It is something I refuse to let go of. I see Dr. Chad at MGH along with a geneticist.

  • JCB267 | published about 1 year ago | Originally written in English

    I hope it was helpful, Janet. Keep moving and keep up the ski ion as much as you can - the more activity the better. I used to ski a lot, every weekend when I was in the military. I haven't in years though, mostly because of the cold! I used to run a lot too, I did a marathon and a few triathlons. I just can't do that any longer. I can do other things though like the elliptical and walking! You just have to find something you can do, stick with it and don't give up. HSP is an inconvenience but don't let it win!

    When first diagnosed (Dr. Schmahmann at MGH) i was told that it was a progressive disease but will progress very slowly. In the past year it has progressed much faster than expected. There's something causing HSO symptoms I have to worsen. Would you happen to have any information on mold exposure. I'm convinced that mold exposure is the issue, there is a very bad mold problem where I work.

    Thanks and hang in there!

    John

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