Question about PPMS diagnosis and disease course

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Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Mon Feb 12, 2018 6:58 am

Hi there. My husband was diagnosed with RRMS last May but now the doctor thinks he has PPMS. My husband is 44. I realize that MS is unpredictable and that everyone's MS is different (I was diagnosed with RRMS in July and we have completely different symptoms), but does anyone know how fast his MS might progress? We are looking at houses right now and were going to just buy something we like, but what we like are three-story homes--they are less expensive than those that offer main-level living, for one. (The house we are in now has WAY too many steps leading up to the entrance--it is a nightmare for people with a disability.) Also, I was wondering how much longer he may be able to work? Right now his only real issue is with his left foot and he is ambulatory. He exercises regularly (runs, etc.). I know we shouldn't count our chickens before they hatch--trying not to... Just can't believe we are dealing with this. I have not heard good things about PPMS.
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Re: Question about PPMS diagnosis and disease course

Postby koneall » Mon Feb 12, 2018 8:19 am

I was dx'd with MS and APS six months ago. For me it was vertigo and pulmonary emboli. I still remember the neurologist saying I could be in a wheelchair by next year. I'm still working but my wife and I are planning on selling the business and going on medical retirement. I'm 61. What I've learned is the attacks wax and wane. I take tysabri infusions monthly. The neuro felt it was the best to jump on this quickly. So far she seems to have been right. I also follow the McDougall veggie/starch diet.
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Re: Question about PPMS diagnosis and disease course

Postby Scott1 » Mon Feb 12, 2018 1:57 pm

Hi,

If your husband can run and exercise even with a troublesome left foot then I'm struggling to see why the doctor has mentioned PPMS. There are plenty of people here who are not defined as PPMS who can't do those things at all.

It's interesting that you also have MS. Do you share the same doctor? I presume the doctor is a GP. I'd ask to see a neurologist to review the opinion. Having said that, I've been diagnosed for 24 years and I have not found any opinion to be all that useful. In the end you have to look at your own position and plan based on your capabilities, not what someone says they might become.

Perhaps you can share some more details on both your husbands symptoms and your own as well as how you treat them. When you write it down sometimes the obvious pops off the screen and tells you the answer.

Regards,
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Mon Feb 12, 2018 6:06 pm

Hi, Scott. My husband was seeing an MS specialist at Georgetown, but had trouble with his front office staff returning phone calls, so I suggested he see my doctor—also an MS specialist. My neurologist used to be with the National Institutes of Health. I was also evaluated by another doctor at Georgetown (not my husband’s doctor, but an MS specialist). The most worrisome symptom my husband has is a spastic bladder. His symptoms began with optic neuritis; my symptoms began about 7 years ago with the side of my face going numb. His symptoms only began to emerge about two or three years ago with his bladder, then eyesight, then with his foot. The worst of my symptoms are spasms in my right calf (though both of my legs are affected). We are currently both on Tecfidera but my husband’s doctor has talked about starting him on Ocrevus if what he has turns out to be PPMS.
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Re: Question about PPMS diagnosis and disease course

Postby Scott1 » Tue Feb 13, 2018 3:21 am

Hi,

I can't be unequivocal without knowing a lot more but I wouldn't be rushing to accept a PPMS diagnosis just yet.

The bladder issues are about smooth muscle and the calf is about skeletal muscle.

When does the calf muscle most commonly spasm? What do the other leg muscles feel like? I might have a few ideas for you on that one.

The bladder problem makes me think about inflammation. Apart from the Tecfedira, do you take anything else?

Nothing you have told me so far says don't buy the house you prefer (but I am working from minimal information)

Regards,
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Re: Question about PPMS diagnosis and disease course

Postby whyRwehere » Tue Feb 13, 2018 3:57 am

Hi,
Sorry to hear about your dual diagnosis (ii?). First time I have heard of that.
Whatever the outcome, save yourself future trouble by shopping for something that is at least adaptable, if not on the level. I also love charm, but am so glad we have a ground floor apartment...no elevator in our building. It just saved the need to move again, which is stressful and expensive.
Every building made these days, should consider how it can be lived in throughout life. Adapting is also expensive and stressful, so save yourself the hassle, because when you are going to need to deal with changing everything, you will be less able to.
I don't see this as being pessimistic, but being sensible.
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Tue Feb 13, 2018 4:35 am

Thanks, Why.

Scott, I’m not sure what you’re asking. If you’re asking how my husband and I were diagnosed with RRMS initially it was because spinal tap results showed high lymphocyte counts (me, seven years ago, before diagnosis, they were 100%), elevated igG and O-bands (him), “Dawson’s Fingers” lesions in the brain (him), a large, active, 1 cm lesion and several smaller 2- and 3-mm lesions in periventricular white matter (me), borderline VEP tests (him—he is being retested, though), normal EMG and nerve conduction studies (legs—me). He is going to undergo EMG and nerve conduction studies in a couple of weeks.

My spasms at first weren’t spasms at all. It started out as numbness in my left leg. The entire leg went numb from the left hip all the way to my ankle. Then both my legs went numb from my knees to my ankles. Then I began to have a tightness in my calves, mainly at night. Then it began to feel like shin splints. This lasted for about three months. When I told my neurologist about these symptoms he sent me for an MRI and that’s when the active lesion was found. I’m now on Tecfidera and Baclofen. My husband was on Tecfidera and Baclofen until recently when the doctor switched him to Tecfidera and some other medications for muscle spasms (I know Gabapentin was one—I’ll have to look up the rest).

My husband had a urodynamic study done to rule out an enlarged prostate, and it was found then that his bladder wasn’t emptying properly—it was actually half full. That’s what was worrisome for the doctor. My husband’s bladder issues began about two or three years ago. His eyesight issues began around October 2016 and his issue with his foot began in December 2016. He was diagnosed in May 2017.
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Re: Question about PPMS diagnosis and disease course

Postby koneall » Tue Feb 13, 2018 7:58 am

10 years ago I developed 'foot drop'. Basically my left foot went numb and I couldn't lift the toes. Eventually I found abstracts suggesting peroneal nerve entrapment. I took this to the orthopedist and he agreed on surgery. They found the peroneal nerve was 90% dead. By moving the tibialis muscle it took pressure of the nerve and it came back 90%. This was a big deal for me because I've been a marathon runner for over 30 years. In fact I first found the term 'peroneal nerve entrapment' in a book on running injuries. I don't know if there's a connection to the MS. It might be coincidental. But MS is scar tissue replacing injured nerve tissue, which is what peroneal nerve entrapment is. Being 61 I've also got enlarged prostate. I found pressing on my lower abdomen helps to drain the bladder.
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Tue Feb 13, 2018 9:00 am

An enlarged prostate was ruled out with the irodynamic study. My husband was found to have a neurogenic bladder.
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Re: Question about PPMS diagnosis and disease course

Postby koneall » Tue Feb 13, 2018 9:37 am

I had read that in your earlier note but putting pressure on the lower belly might help to empty it? Or is there no control and urine drips out on its own?
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Tue Feb 13, 2018 10:52 am

Ah. I see what you're saying. I don't think anything helps empty it. He doesn't even realize that it's full. I'll suggest that he try that, though. He is able to urinate... He had no idea there was a problem until he had the urodynamic study done. (Although he did have urinary urgency and the need to get up several times during the middle of the night to go.)
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Re: Question about PPMS diagnosis and disease course

Postby Scott1 » Tue Feb 13, 2018 1:38 pm

Hi,

Let's start with your leg first. You gave me the answer I was looking for. What causes that spasm in the calf comes from nerve entrapment much higher up. There's a muscle called the periformis that the sciatic nerve passes through. If the muscle squeezes the nerve it will trigger a reflex spasm further down the leg, usually lower than the knee and into the calf. If you get a really bad one it will contract the muscle next to the shin bone aggressively and that is as painful as it gets. More normally you feel it in the calf. When the periformis is tight it will also trigger tightness in an adjacent muscle called the glute med. From there, other muscles get involved as they try to compensate and you feel a little bit of lower back discomfort or you get a sore or numb backside if you sit too long in one position.

When you go to bed or sit down to watch TV and you don't move, the weight of your body adds pressure to the periformis and it crushes on the sciatic nerve and that triggers the spasm. Here's a video of how it happens - https://www.youtube.com/watch?v=2r1uaRAHbj4 I've had periformis syndrome so I know how it feels. The best intervention is a cortisone injection into the membrane over the periformis and lots exercises aimed at the core muscles to strengthen them up. You don't want any exercise involving abduction (moving the leg away from the center-line in external rotation (internal rotation is fine). The best way to get those exercises is in a pilates studio doing leg and foot work. Getting someone to treat you for periformis syndrome with cortisone is the hardest bit. Additionally a good massage can help (but can hurt till its done) and dry needling can free up the fascia that is remodeling itself around the tight muscle.

Your husbands issues related to the bladder are primarily about smooth muscle action but I wouldn't ignore the involvement of the skeletal muscles. Control of the smooth muscle is governed by the pathways coming from the spine. He is only aware that he is not completely voiding because of testing so lets say those pathways aren't broken yet. The quality of control over the surrounding skeletal muscles is something you can influence and that may improve the whole voiding process.

Skeletal muscles contract and relax through a process called excitation coupling. If you are unfamiliar with it try searching on youtube for a video. There are many. It's a process where a series of signals cause cells to release their stores of calcium and that causes strands of muscle fibres to bind to each other in contraction. Then ATP signals the contraction to cease. You can improve that process by boosting your production of ATP with large doses of CoQ10 and acetyl-l-carmitine and you can make relaxation easier by taking magnesium (as magnesium glycinate). A good, unrelated, book that explains the significance of ATP is "metabolic cardiology" by Stephen Sinatra.

I don't really care what diet you follow but all the better known ones don't use added sugar or a lot of gluten. I avoid both. They both can increase inflammation.

If the path way from the spine is the issue then you want a flexible spine otherwise what have you changed if your spine doesn't move freely? Pilates will give more control over the abdominal and core muscles as well as letting you move your spine vertebrae by vertebrae. Running won't, if you have underlying tightness. My own bladder control became normal over time by doing this.

I take Dantrium for spasticity and it is far more potent than Baclofen. Don't even think about it if you won't exercise as it will totally expose the underlying weakness. You will end up on the floor thinking you have dramatically got worse until you strengthen your muscles through exercise. I have also taken 2x500mg daily of valacyclobir for a very long time and that did help smooth muscle problems I had with my eyes.

Regards,
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Tue Feb 13, 2018 6:37 pm

I don’t have periformis syndrome, Scott, as much as I’d prefer it over MS. I had an EMG and nerve conduction study done in my legs and both tests were completely normal, which means that what I have is a CNS problem and not a peripheral nerve problem. I also do not have spinal stenosis (doctor did MRIs to check for that, too). Furthermore, I understand that periformis syndrome causes sciatic pain. I do not have sciatic pain.
Last edited by ebrownkirkland on Tue Feb 13, 2018 6:47 pm, edited 1 time in total.
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Tue Feb 13, 2018 6:42 pm

Also, if it is periformis syndrome, why has it been pretty much absent all winter only to come back with a vengeance when I went to a warmer climate (Mexico) for four days? When I came back to the States things got better again.
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Re: Question about PPMS diagnosis and disease course

Postby Scott1 » Tue Feb 13, 2018 7:23 pm

Hi,

Those tests won't show it. As it's a syndrome there will always be a divided camp on what to do about it. The best test is if someone massages the periformis and the glute med and tells you if it is tight. You would feel it if it is when they do it. It doesn't have to be painful.

It's the tightness of the muscle that counts not the nerve conduction. That will be determined as much by whether the muscle has been injured by ischemia, whether your pelvis is tilted out of neutral, how tight the hamstrings are at the insertion, whether the multifidus (the muscle that wraps around the spine) is switched on or off and how your gait operates which is dependent on other muscles. How often and in what way you exert a tight muscle makes a big difference.

Tight muscles are part of MS. They are not mutually exclusive concepts. You can easily have a nerve conduction problem somewhere that seems entirely unrelated that changes the way you move and that can trigger tightness in the hips. What did you do that was different in the four days that you were in Mexico compared to all winter? It doesn't take much when the muscle is already tight. If it settled down when you came back did you go back to what you did previously or did you keep doing what you did when you were in Mexico?

Regards,
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