K.C. I.T. Progress Tracking Journal

Inclined Therapy Progress Tracking Journal

Karyn / K.C.
Female
Age: 61

MS History:

Diagnosed from MRI with/without contrast of Thoracic and brain on 11-13-09, Friday the thirteenth.
Number of lesions: 4
Location of lesions: T6-T7, T7-T8, T10-T11 Brain has demyelination within right posterior centrum semiovale.

Also reported: degenerative disc disease at C5-C6, C6-C7 and disc protrusion that contacts the spinal cord at T8-T9. MRI from April 2007 reports 7.1 cm. goiter. (Yikes!)
Neurological exam, 4-2007, noted absent response in right peroneal nerve. Dr. said, “due to wasting of EDB muscle“. Thanks to Google, I know what that means. I don’t have wasted muscles (on the top of my foot). This MRI was without contrast, so another with dye was needed to better see what looked like a lesion at T8. Unfortunately, this Dr. didn’t tell me anything other than he thought my numbness was caused by my back, and mentioned a protruding disc. I didn’t get the next MRI, so diagnosis was delayed.

Health History and Current Problems:

Pins and needles numbness (parasthesia) of the feet and ankles that began intermittently in the Fall of 2006. It’s now constant and up to mid-thigh.

Muscle weakness in my legs beginning Spring 2007 that has progressed. I now get “jelly legs” after standing as little as 5 to 10 minutes.

Insomnia beginning Fall 2004. I take Zolpidem for it about 75% of the time, since July 2009

Spasms almost daily. I’ve found taking Calcium/Magnesium/Vit. D supplements at about 1100 to 1200 mg.Calcium daily is both preventative and an extra 300 mg. of Calcium/Mag/D taken if/when they start, relieves the problem within 30 minutes.

Kegel weakness: bladder urgency, incomplete emptying. My bowels were almost nonfunctional by 2009. Used Docusate almost daily. I had a magnet treatment with an accupuncturist (I was afraid of the needles) on 9-16-09, and learned a little about Accupressure which I’ve done sporadically ever since. I don’t think it’s a coincidence, but my bowels are now normal.

Difficulty concentrating: This was noticeable in 2007, 2008 when I was still trying to work. I’m not aware of it now.

Problems with balance and walking became noticeable November 2009.

My latest symptom is stiffness in my shins and back, beginning December 2009.

These are the problems I thought of without referring to Andrew’s list. Probably listed in order of severity and importance to me. From his list, I can add:
Cold feet, no dreams, dry skin, dry hair. My nails are strong probably from all the Cal/Mag/D. I’ve had tremors twice, but I’m not sure if it was just exaggerated shivering because I was cold.

Other problems (probably arthritis but never diagnosed):

Left hip pain severe enough to interfere with sleep, Fall 2004. I think I exercised this away.
Right shoulder pain with any movement of my arm. Worst in Jan. 2009. Again, interfered with sleep. I haven’t been able to exercise this away, but it’s much better. The left shoulder pops and cracks with movement, but doesn’t hurt.

And then there’s Pain. How could I forget. Probably because I’m not in pain now. The pain of the MS hug during relapses was probably the most severe and continuous pain I’ve ever had. Even though I didn’t know the cause, those events seemed so significant that I documented the symptoms on my calendar , how often they occurred, how long they lasted, and what medical treatments I had. I was misdiagnosed with Shingles, and given 800 mg. Ibuprofen and anti-virals for the three major relapses. Didn’t help except to slightly ease the pain.

I didn’t get early treatment, took 5 years to get a diagnosis, and it seems that the natural progression of the disease is that the relapses have ended, (I hope). I think I’ve gone from RRMS to SPMS. I’m not sure because I haven’t been back to the doctor since my diagnosis. There is a worsening of some symptoms resulting in greater disability.

Relapse history:

October 2004 Onset: Fatigue so severe I could hardly get out of bed for three weeks.

9-23-2006 First relapse with pain. I woke up with what felt like a belt of pain around my hipbones. More fatigue. This lasted about three weeks.
Parasthesia of feet and ankles began intermittently, Fall 2006.

3-9-2007 Pins and needles numbness increased up to my chestbone. Pain followed, this time hugging the front of my ribcage. Took Ibuprofen every 6 hours from 3-25 to 4-15-07. This relapse lasted over 4 weeks. It followed a bad cold in Feb. 2007. I hadn’t been sick at all since Dec. 1997.

4-15-08 Had another bad cold in Feb. 2008. Relapse followed starting with increasing numbness, pain beginning 4-19, again around my ribcage. Lasted until May 11, 3½ weeks.
Those were the big ones.

Relapses lasting one to two weeks with increased numbness and more moderate pain, often in my back at waist level:
8-1 to 8-8, 2007 1-8 to 1-15, 2009
6-3 to 6-16, 2008 4-15 to 4-30, 2009
11-16 to 11-30, 2008 5-3 to 5-14, 2009
June 23-?, 2009 Noted pain in my lower back starting 6-27, can’t sleep and wrote that I’m getting depressed.

In addition to the huge ones and the smaller relapses noted, a pattern emerged in 2008, 2009 of relapses, (periods of noticeably worse numbness often with back pain), lasting 2 to 3 days, happening once or sometimes twice a month.

At this point, there is no remitting. I’m always numb, weak, have trouble walking, etc. Back pain comes and goes. Diagnosed with MS Nov.18, 2009.

Self-diagnosed:
FSS: 6.1
MSIS: 69
EDSS: 4.5 to 5
I used the webpage questionnaires, not sure of accuracy. I wouldn’t call how this has impacted my life “moderate”.

Geographic location: Arizona desert, USA Hot and dry, low altitude. Since 2002

CCSVI, MRV: No
(added 3-7-10): I haven’t been tested for CCSVI, but that doesn’t mean I don’t have it. MRI from 2007 says, “reversal of normal lordotic curvature in mid cervical spine" and "goiter deviates trachea”. MRI from 2009 talks of degenerative disease in neck vertebrae. While looking at pictures of the jugular in relation to cervical vertebrae, posted with information about CCSVI, I started to wonder if one or more of the problems in my neck might be inhibiting blood flow. My guess is there’s a good chance they are.

My (former) job: Self-employed metalsmith / jeweler, since 1971

Lots of toxins here. Cadmium from melting metals and solders; fluorides from paste flux; burning of solvents, (which has been linked to MS), from denatured alcohol / boric acid firecoat flux; dust and grit from grinding metal with Cratex wheels; polishing compounds (one of which now comes with a lung cancer warning); ammonia fumes from the ultrasonic; hands in Sparex pickling acid; on and on. I’ve had feeble active ventilation, never industrial quality. I suspect one of these might be why I’m sick now.

I stopped working 11-1-08.

Got my first computer 12-25-08. Spent a couple of months letting Windows teach me how to use it. Since my diagnosis, I spend lots of time online learning about MS, with a focus on alternative treatments.

I’m in no rush to get on conventional drugs. Even my Dr. says they’re pretty ineffective. I already have less relapses. I’d like to find a way to slow or halt the progression of the disease and repair the damage done.

Tilted my bed 3-1-10. I’m hopeful.

Other alternative treatments I’m using, beginning 1-13-10:

Zyflamend, an herbal for inflammation
Flax Oil, 1 or 2 gms. / day, for Omega 3’s
Calcium/Magnesium/Vitamin D, 1100 to 1200 mg. / day
Anthocyanin flavonoids and pycnogenol,
from an article by Timothy R. Stout, (now withdrawn from archive). They repaired the BBB in rats in 24 hours. Have to guess what a therapeutic dose might be.
Chlorella, produces gamma interferon which strengthens the immune system. Might not be a good idea for MS, but it’s good nutrition and cleansing. Supposed to eventually remove metals from the body.

www.thisisms.com/article63.html The jury is still out on whether MS even is an autoimmune disease.

“Every patient carries her or his own physician inside.”
(Albert Schweitzer, 1875 - 1965)

With Inclined Therapy, you might slide down your bed but at least you can’t fall off the wagon like you can with diet and exercise.
___________________________________________________________________________________________________________
First 7 day notes:
2 Mar, 2010 Woke up sweaty when I’m usually cold.
3 Mar, 2010 Felt less numb in the AM.
4 Mar, 2010 Woke up with pain around my sides and hipbones. Prayed it wasn’t a relapse starting! Thought maybe muscle aches from exercise. Read the “Parameters” page and was relieved.
5 Mar, 2010 Sleeping well and less. Slight pain around hipbones and lower back upon arising. Numbness is definitely better in the AM.
6 Mar, 2010 Felt what I would call “increased circulation” on the bottoms of my feet, when I first laid down. Might be what some call “burning”, like warmth with pressure. My husband says he thinks he’s sleeping better.
7 Mar, 2010 Better energy level during the day.
8 Mar, 2010 Added a wedge to my computer chair yesterday and was less numb in the PM already. (From FAQ section on sitting posture.)
_______________________________________________________________________________________________________
Update (2nd WEEK) I.T. Tracking date:_ 9 through 15, March 2010

I’m still waking up with the feeling of muscle aches around my waist. (I didn’t exercise the last three days.) Sleeping better and wake up with a clearer head, not groggy. Always wake up thirsty, too. Thought the dark circles under my eyes looked lighter yesterday.

Decided to check my blood pressure (parameters page) on Mar 9. It was 81S over 53D, pulse 63 first thing in the AM. Lowest I’ve ever seen. An hour later after black tea: 89S over 59D, pulse 75. On March 15 an hour after arising and after tea: 93S over 57D, pulse 68. Obviously, high blood pressure has never been a problem.

Lastly, I’ve woken up with my right arm asleep at least 8 times since tilting the bed. I’m not laying on it when I wake up, but could have been before. Several times it’s so asleep it won’t move, and I have to use the other arm to lift it over the edge of the bed to get circulation again. This is my bad shoulder. I have no idea if there is a significance here, or it’s just a coincidence.
__________________________________________________________________________________________________________________________
Update (following two weeks) I.T. Tracking dates:_16 - 29, March, 2010

On March 17, my husband and I raised our bed another inch to get the full 6” at the head. We both had trouble sleeping the first night, but after that it was fine. I still have the feeling of muscle aches on the sides of my waist. It’s got to be the bed.

My husband says he has more energy and feels like doing more during the day. Besides the fact that I just feel a lot better, I have more stamina as well. Two days ago, I exercised for 30 minutes and then vacuumed all the carpets. I realized that a month ago, I never would have had the strength to do that. After one chore, I’d be running for the chair to rest. So this is encouraging progress.

Added 3-29-10:
After learning a relative had been hospitalized twice in a week’s time for kidney stones, I remembered reading that magnesium was needed to keep calcium in solution and preventative for kidney stones. To refresh my memory, I referred to a book called, “The Magnesium Miracle” by Carolyn Dean, M.D., N.D., that I’d read maybe four years ago. I was right, but found a lot more that I’d forgotten.

I was taking Cal/Mag/D supplements for twitches, spasms. They did seem to provide relief in a short amount of time. Now I read that too much calcium can be a cause of spasms. She calls them, “calcium-excess muscle spasms”. Since I had always taken calcium and magnesium together, I could never be sure which one was helping. Reading this, it was obviously the magnesium. “Calcium causes contraction in skeletal muscle fibers, and magnesium causes relaxation. When there is too much calcium and insufficient magnesium inside a cell, you get sustained muscle contraction: twitches, spasms, and even convulsions.”

Twitches, spasms, fidgety legs as Andrew calls it, and RLS are probably about the same problem with a variety of names. It’s an MS symptom I have almost daily, usually late in the evening and early in the morning. The use of Cal/Mag/D supplements to relieve this was only partially right. I plan to decrease calcium and increase magnesium from now on.

There are 68 factors that correlate to magnesium deficiency listed in the book. Of these: bowel problems, chronic fatigue syndrome, cold extremities, concentration difficulties, depression, insomnia, muscle cramps or spasms, muscle twitching or tics, muscle weakness, numbness of hands or feet, tingling of hands or feet, tremor of the hands are all symptoms of MS as well. Another quote, “If there is too much calcium in the kidneys and not enough magnesium to dissolve it, you can get kidney stones. Calcium deposited throughout the bladder can make it rigid, lower it’s capacity, and lead to frequent urination.” Also an MS problem. It would make sense to treat a magnesium deficiency to see if there are improvements in these areas.

There is a whole chapter in the book about “Osteorporosis and Kidney Stones”. I can think of two people I know who were told by their doctors to take calcium or calcium with Vitamin D for osteoporosis, without a mention of magnesium to balance it. This sets you up for kidney stones. The benefit and need for magnesium is often overlooked.

I checked into this to help someone else, but ended up helping myself. Yesterday, (Mar 27), was the first day I tried taking a 400 mg. magnesium supplement about 9 PM to see if it might prevent the 11 PM nightly spasm attack. I felt some tingling, but really no spasms. Magnesium citrate is supposed to have the best absorption, but is a little more expensive, around $6 for 100. I’m using a 225 mg. magnesium citrate with dinner. I plan to continue to add the 400 mg. “Triple Magnesium Complex” at 9 PM. These were dirt cheap, $2 for 100 of them from Swanson Vitamins on a buy one get one free deal.

Whether you use DMD or not, I think it’s all a science experiment. I’ve noticed how people with MS are often put on 2 to 3 different DMD’s before finding one that actually benefits them and they can live with the side effects. Magnesium citrate (as epsom salts) has been used for years as a laxative, so that might be the side-effect.

I’m writing this to share my personal science experiment with MS, (that includes I.T.), and in hopes it might help someone else.
_______________________________________________________________________________________________________________________________

Update (2 WEEKS) I.T. Tracking date:_ 30 March - 12 April, 2010

Been feeling tired again. Insomnia persists. Still have the feeling of muscle aches around my waist. The muscle ache type pain makes me uneasy because it’s reminicsent of the beginning of a relapse. I’ve already had the preliminary cold this January. Increased fatigue and pain could be the start of something bad. My legs feel weak and need rest after a small amount of walking. The previously improved energy level has gone.

Possibly the less stressed state of retirement will let me bypass a relapse this year. This little downturn might be all I‘ll have, and things will improve from here. It might also mean some of my alternative treatments are working to keep me relapse free. I’d like to hope so.

After reducing calcium to 500 mg. / day and increasing magnesium to 650 mg. / day or more, the spasms at night are virtually gone. But they’ve been replaced by other paresthesias, like the feeling of popping (in my circulation?) on the bottoms of my feet, or prickly numbness almost as if something was gripping the tops of my feet and ankles. (Not at the same time, at least.)

I’ve been trying Acupressure at night to address paresthesias. Found a great resource: www.yinyanghouse.com/treatments/acupunct...r_multiple_sclerosis This gives specific pressure points that are best for MS. (Note: Acupuncture and Acupressure are targeting the same points.) Acupressure is something you can do yourself with a little study. I’m using the book, “Acupressure’s Potent Points” by Michael Reed Gach. It tells you how to find points and how to massage them. On the website, clicking on a named point takes you to a verbal description. Below, on that page, there’s a link called “graphic” which shows the location. The book in combination with the website is an informed place to start.

There is an article that addresses CCSVI and Acupuncture points recommended for it here: www.yinyanghouse.com/practitioner_member...ncy-and-sky-window-t So there’s even Acupressure to get your blood flowing better: “The Sky Window Points“. A list of points and graphics is given. If your fingers lack strength, there are wooden massage tools designed for use on pressure points. I’m not wholly given over to the concept of TCM, but as CAM, why not? The electric shock that went down my numb leg after first pressing on ST 36, a point below the knee, got my attention. Turns out St 36 is included in the lists related to MS.
_____________________________________________________________________________________________________________________________

Update (2 WEEKS) I.T. Tracking date:_ 13 - 26, April 2010

It’s been a bad two weeks. I think this is my spring relapse, although milder than the others. All my symptoms (fatigue, insomnia, weakness, paresthesias and spasms) get worse at the same time. Feeling more fatigued started April 2, followed by the increased paresthesias mentioned in my last update. Tingling numbness is now up to the tops of my legs and even in the torso area. Pain around my ribs started April 18. So far, it’s been mild. I think it’s because of the Zyflamend, herbal anti-inflammatory and / or the Chlorella or LarreaRx (anti-viral and anti-inflammatory), I’ve been taking.

Found this at About.com:

What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

Interesting. Could be why I feel pain there. I liked some of their tips for relief as well: deep breathing, or apply pressure to the area. Even massage was mentioned. Down to earth, practical things.

Don’t know if IBT is changing anything right now. Could be a real relapse or a pseudo-relapse. It would take another mri to find out. No thanks.
______________________________________________________________________________________________________________________________

Monthly Update (12 WEEKS) I.T. Tracking date: _27 April - 24 May, 2010

_30 May I’m late with my update and there are things to report. (My husband and I are on an emergency road trip to Colorado. His sister, aged 46, died yesterday following a massive stroke on Wednesday. We drove all day and night Thursday to get here. We’re now sleeping flat in hotel rooms. )

The “traction” muscle aches on both sides of my waist have finally ended, approximately May 20. They began on the third night inclined, so lasted 11 weeks. This has been the most noticeable effect of sleeping inclined, and sometimes quite uncomfortable. I searched the word “traction” on this site to reread what was said regarding this.

We spent two nights this month sleeping flat while visiting friends. The first day, May 13, I felt more tired than usual. The following day, a reddened area on the inside of my heel began throbbing and it was painful to walk. The redness is capillary damage, and there is a bulging vein or lump inside it. This was the source of the pain. It’s looked like this for twenty years or more, but never hurt before. It was greatly improved after the first night home sleeping inclined.

It’s another reminder that things could be worse without I.T. I’ve been feeling like sh__ since April 1, but it’s much milder than other spring relapses. There’s no proof that the improvement is from I.T. and herbal anti-inflammatories, but I’m convinced my MS would be worse if I was doing nothing.

Another recent development is the return of dreams. I had two memorable dreams this month, after many years of none. Hopefully it’s from increased neural circulation due to I.T. After watching someone die of stroke, it makes you want to take care of those capillaries. I’m glad I found I.T. when I did.
_______________________________________________________________________________________________________________________________

Monthly Update (16 WEEKS) I.T. Tracking date:_ 25 May - 21 June, 2010

After an 8 week period where all symptoms got worse, I now am feeling better, beginning May 26. Makes me feel that nothing I’m doing is making much difference. The disease is just following it’s natural progression.

Slept flat for 9 nights while away from home. Didn’t feel better or worse from it.

Since returning to my inclined bed, I’ve noticed mild traction discomfort around my waist again.

Began researching LDN after reading Foreverspring’s inspiring journal. I’ve got nothing to lose, so I started taking 1.5 mg. LDN on June 7, to increase to 3 mg. in a month.
___________________________________________________________________________________________________

Monthly Update (4 WEEKS) I.T. Tracking date:_17 Aug. - 13 Sept., 2010 (28 weeks total)

My husband and I have been sleeping inclined for over half a year now. We did the week+ sleeping flat at 12 to 13 weeks. It wasn’t planned, but also didn’t produce any noticeable changes.

I’ve neglected to update for several months (Sorry, Andrew). Not much to report. My MS isn’t better, but then again, it’s not worse either. Maybe I don’t have CCSVI despite degenerative disc disease in my neck. The months of traction discomfort, as muscle aches on the sides of my waist, have been the noticeable effect of sleeping inclined. Should be helping the scoliosis discovered on the way to an MS diagnosis.

Perhaps my husband is the bigger fan. He says it’s helping his back. He has degenerative disc disease in the lumbar spine. One wrong move, like bending over or lifting something can cause his back to “go out” and lead to days or weeks of pain. This hasn’t happened since he’s been sleeping inclined. He had back pain begin one time, but it resolved in a day or two.

He says he’s stopped dreaming as well. Strange, and the opposite of most, but it’s significant because he’s a Viet Nam war veteran with ptsd. Dreams = nightmares for him.
___________________________________________________________________________________________________

Update I.T. Tracking date:_13 Sept, 2010 - 7 Jan, 2011 (44 weeks total)

Checking back in. My husband and I have been sleeping inclined for 44 weeks. At this point, neither of us would change that.

My husband believes it has improved his sleep and energy level. I overhear him telling people how much it has helped his back problems. As a result, our next door neighbor has inclined his bed.

I am less sure about the benefits for MS. When I say I don’t think the bed is helping my MS, my husband says, “You don’t know that.” That’s true.

What has happened is that I’m not getting worse. With MS, that’s a benefit. I’ve realized that probably nothing will undo the nerve damage from the major relapses. Pins and needles, paresthesias, muscle weakness and daily spasms continue. The fatigue comes and goes. I’ve been feeling better for a couple of weeks and I hope it continues. But I’ve had times of feeling better before, only to have them replaced by fatigue and feeling awful again.

I’ve decided I’m not convinced MS is causally related to CCSVI. Dr. Zamboni gave statistics like 98% of people w/ms have CCSVI. The Buffalo study gave numbers closer to 60%, and did support a correlation, but could not determine if the MS caused the CCSVI or vice versa. With that in mind, it makes sense to sleep inclined even if there aren’t noticeable benefits for MS.
_____________________________________________________________________________________________________

Update I.T.Tracking date:_8 Jan, 2011 - 5 April, 2011 (57 weeks total)

March 1, 2011 was our one year anniversary of sleeping inclined.

This experiment to help my MS has had a tremendous benefit for my husband. His back problems continue to be “on hold”, meaning they never manifest. He says he sometimes feels his back pop into place when he first lays down on the inclined bed.

My MS is a tougher problem. I still feel like I have MS way too much of the time. Sometimes I think, ”Well, what do I expect? I HAVE MS.”

I’m still having relapses/exacerbations too. At least they’re much milder than the initial ones. Spring and Fall, the same old symptoms return, lasting two months or more.

But I don’t think my disease is progressing. My disability isn’t increasing, and there aren’t new symptoms.

There have been other small improvements recently, too. The frequency of spasms has diminished to hardly happening at all now. The strange burning and popping sensations are gone, as well as the traction pain. I’m not noticing much pins and needles in my feet and ankles either. They’re still numb, but the prickly feelings are gone. Some of this is could have been related to sleeping inclined, as mentioned on the “Parameters” page.

Another subtle benefit is my hair is a lot healthier. It used to be really dry and brittle. Now it looks and feels healthy. My husband also has no signs of hairloss.

Hi Karyn

Magnificent Job of your Tracking Journal.

Have added K.C. to the name so more easily identified when other people using I.T. "Eventually get around to posting their tracking journals"

Andrew

Are you sleeping with your hands up near your face or above your head? This is the same as standing holding your arm in the air.

Andrew

Yes, Andrew, you're right. I did have my arms up over my head.

K.C.

This is an obvious correlation with the affect of gravity and the circulation. Proof in itself that posture alters the way fluids circulate.