MS Information

Information about MS, the symptoms or treatment

Plasmapheresis

I am so excited.  Lynn was able to type using both hands yesterday!  He hasn’t been able to do that in months. He also was testing out whether he could hold a fishing rod and he was not only able to hold it but to reel it as well.  He hasn’t been able to fish, which he dearly loves to do, in a couple of years.  For the first time, we have hope of improvement, and it’s all thanks to plasmapheresis.

Lynn was in the hospital in May with respiratory depression.  A week after his discharge, he noticed a significant decrease in movement and concluded he was having an exacerbation.  Since he got steroids while he was in the hospital trying to improve his breathing, his doctor did not want to do that again so soon.  Instead, he proposed doing a series of plasma treatments called plasmapheresis.  He would have five treatments, and if he noticed improvement; maybe two more.

Plasmapheresis is a process where they put a central line into either your neck or groin and through that point, remove all the blood from your body and run it through a centrifuge that separates the Red blood cells, white blood cells, platelets, and plasma.  You get back the RBC, WBC, and platelets but you get back albumin (liquid protein), saline and other stuff in place of the plasma. Removing the plasma reduces the inflammation produced by the antibodies in the nerve.  

Plasmapheresis is done every other day so that the body has time to pull more antibodies out of the tissues to be removed. Lynn saw improvement the next morning after the very first treatment.  Each time he got a little more function back.  He was tired but felt pretty good for treatments 1-5.  Treatments 6 and seven hit him hard.  His hemoglobin had dropped so low that he felt pretty bad. 

It’s taken about two weeks to get him back to normal now that he’s been home, but he’s doing awesome!  His doctor said he might continue to improve for a few weeks after discharge, and that seems to be the case.

So if any of you are like Lynn and steroids don’t help but make you a crazy zombie who feels like a Mack truck ran you down, then ask your doctor about plasmapheresis as an option.  It doesn’t work for everyone, and it’s not an option if you have heart problems, but if it does work, it’s fantastic.  Well worth trying.

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Stiff as a Board?

All my life, I have heard people say something was as “stiff as a board,” but it wasn’t until Lynn started struggling with MS that the phrase took on a literal meaning to me.  I had also heard of spasticity, but I had no idea just what that could mean.  Early on, Lynn started struggling with spasticity (or a better description would be spastic paralysis).  His legs would suddenly become so stiff that even if I used every ounce of strength I had, I almost could not get his leg to bend.  It was the spasticity that finally made him stop driving.  His leg would not bend so that he could brake or accelerate!  Sometimes the spasticity would last a few minutes, but gradually it became a constant thing.

In addition to the spasticity, he also had muscle spasms.  His leg will begin to tighten up like a spring beginning to coil, and then the leg will spasm with a kick outward.  Sometimes the contractions are just annoying–other times they are so intense they are painful.  Sometimes it’s one leg–sometimes both.

When Lynn and I got married, he was a smoker, but he cut way back on smoking cigarettes.  He would only smoke at work or have one at night. When the spasms started, smoking became his only relief.  I hate cigarettes, but I would buy him a case at a time and gladly light one up for him rather than watch him suffer.  It was amazing.  His leg would be so incredibly stiff that it would be sticking straight out.  He would take two or three hits of the cigarette, and I could literally watch the stiffness release and his leg become limp again.  The same was valid with the spasms.  Smoking would relieve them when nothing else would. It wasn’t the nicotine either; it was something else in the cigarette because nicotine patches did not provide the same relief.
In 2009, Lynn had a baclofen pump implanted.  Baclofen is a muscle relaxer used to treat spasticity.  His oral dose was very high, and yet the spasticity was not being relieved. His doctor advised getting an intrathecal pump implanted (that’s a pump that is implanted under the skin and holds medication that gets pumped into the area outside the spinal nerves by way of tubing inserted into the spinal column.)  He did, and it helped a lot.  The spasms stopped, and the rigidity greatly improved.  Over the next year, the dosage gradually increased over several months until most of the stiffness (tone) came under control.

In November of 2010, Lynn entered the hospital with an infection, and while there, coughed up a nasogastric tube that was giving him a tube feeding. He aspirated nutrition and developed pneumonia.  Being in the hospital with pneumonia forced him to stop smoking obviously.  He didn’t want to begin smoking again after his discharge, but he still had spasticity.  He found another way –an electronic peddler.  Now when he feels the tension increasing, he peddles.
Unfortunately, the relief granted by the peddler was temporary. The spasms have returned. They have come back so frequently that peddling off and on around the clock is required. He even has to peddle while he sleeps!  He goes to bed, and the leg starts to jump.  Then I get him up into his wheelchair and attach his legs to the peddles.  I go back to bed, and he sits and peddles. The peddling then relaxes the spasms, and he falls to sleep.  We have adapted his wheelchair so that we have a board in front he rests his arms on, and I have a headband I attach to the back of his chair so that his head won’t dangle and cause neck spasms.  He sleeps that way for a while, then wakes me up, I put him back to bed, and he sleeps till the spasms start again.  We are usually up and down like that a couple of times a night.
What would be helpful is if there was a device we could put in the bed that would alternately raise his legs while he slept so the tension would be relieved and he could stay in bed.  Does anyone know where we could get such a device?  His hospital bed was like that, but we don’t want to use a hospital bed; they aren’t particularly comfortable.  Got any ideas?

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Being diagnosed

My spouse was diagnosed with MS in the fall of 2006. Since that time, the journey we have taken has been a whirlwind of change and adjustment. Realistically, I believe he had MS for many years before he was diagnosed. The signs were there–dragging foot, progressing to leg weakness, and then difficulty standing straight when he was tired. His father had MS, back in the day when there was no treatment. He died before he turned 50 and was bedridden most of those last few years. With that family history, you would think Lynn would have been diagnosed early, but that was not the case. As with many MS patients, the symptoms came and went. Being someone who hated to go to the doctor, he let the symptoms go. When I would nag him about asking his doctor if he had MS, he would assure me that he had and that he didn’t have it. Knowing him, I was sure that on the rare occasions he went to the doctor, he was minimizing what was happening (if he said anything at all). Back then, he felt great. In fact, if you asked him how he was doing, he would say, “If I was any better, I couldn’t stand myself.”

Lynn has always been very health conscious. He eats a healthy diet, has always exercised regularly, tried to live a relatively healthy lifestyle. He had a good mental outlook on life, had lots of things he enjoyed doing, and was talented in many ways. His spiritual life was strong–he had/has a solid foundation in Christ and was active in his church home. Life was good.

Then I noticed him one day wiggling the fingers of both hands and watching them closely. I asked him what he was doing and he mentioned that the fingers on his right hand were slower than the fingers on his left. That alarmed me. I told him that something might be wrong in his back (not mentioning that I thought it was MS) and that he should have it checked out. He told me not to worry. I insisted something might be wrong and asked to accompany him on his next doctor’s appointment so I would know what was being discussed. He agreed.

His next appointment was with a cardiologist. He has a mitral valve prolapse that is being monitored but he has no symptoms. Because it could one day require a valve replacement, I usually go with him to those appointments. I work in the hospital where he goes for doctor’s appointments and knew his physician. After his examination of Lynn, he asked me if I had any concerns. I told him not about his heart but explained my concerns about what I had seen. He asked if I wanted him to get Lynn an appointment with a neurologist and I said yes. That’s how he came to be diagnosed.

First, the MRI showed lesions. Then there was the lumbar puncture. (If you have never had one of those, they numb your back and put a needle into the spinal column to withdraw spinal fluid to test). His test came back positive for MS.
We got the news on our way back from a weekend at Hatteras fishing. I knew what the verdict was going to be before we got the call. I had watched Lynn barely able to walk back and forth from the beach to the motel room. I saw him unable to stand up straight like his back was made of melting butter that would thicken up if moved away from the fire but then begin to puddle and shrink if moved closer to the flame. I think we both knew but were praying we were wrong.

The call came over his cell phone just before we arrived home. He took it while he was driving. I knew from his end of the conversation what was said. I held his hand, and neither of us spoke. We got home, and I started to unpack the car. He stayed outside. When I came back, he began to cry–not so much for himself but for his son. He knew what it was like to have a father with MS; to see the struggles and to know that he might have that same struggle in the years ahead.

After we both cried, we both prayed. We prayed for strength to face what was ahead and to make the right decisions about whatever options we were given. The caller had offered to set up an appointment with a neurologist who was also doing MS research on the effectiveness of taking two of the common MS drugs together to see if they reduced the occurrence of exacerbations. We said that would be good and so we started down the road to living with MS.

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