MS Hug information - updated 4/2/13

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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Wed Apr 03, 2013 3:32 pm

Azaeleaprawn wrote:
HappyPoet wrote: Seems too many doctors don't listen--actually listen--to their patients.

Yes, isn't that the truth! "Listening skills" something that aren't taught properly in medical school, whereas, I think they should be a course all of their own.

The List-
1. Listening skills
2. Compassion
3. Basic knowledge of human nervous system
4. ?
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Re: MS Hug information - updated 4/2/13

Postby lovebug » Wed Apr 03, 2013 8:28 pm

Well `HAPPYPOET` I went for my first trigger point injections today. The injections have lidocaine and B-12 in them. I cannot say that I noticed any improvement in the MS Hug. But than again I stopped believing in miracles a long, long time ago. I am going to continue with this line of treatment and see where it takes me in the next weeks to come. I am also looking into the Intercostal nerve block inj. I just have to find a dr. to do them. Thank you again for your time.
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Wed Apr 03, 2013 8:55 pm

So glad you had the injections. I wonder why steroids weren't used in your case--did you get a chance to ask why they weren't used? Is the naturopath not allowed by law to administer steroids? Did you have your B vitamin levels recently tested? I'll see what I can find out tomorrow.

Maybe looking for a doctor to give TPIs w/ lidocaine + steroids would be easier than finding one to give INBs which can require fluoroscopy guidance which might not be available to all doctors and, thus, harder to find. Then, if the TPIs w/ lidocaine + steroids don't help, you could try to find the next level of help from a doctor who can give INBs w/ lidocaine + steroids.

Will get back to you. :)

~~~~~~~~~~~~~~~

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1. Listening skills
2. Compassion
3. Comprehensive knowledge of MS
4. Comprehensive informed consent.
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Re: MS Hug information - updated 4/2/13

Postby lovebug » Wed Apr 03, 2013 9:22 pm

I have not had my B levels tested for awhile now but about 1 year ago I did have B-12 inj. done every 2 weeks for about 10 months.
My next appt. for TPI. is monday so I will ask the Naturopath if he can do these inj. including steroids. If not I am going to contact a dr. at the pain clinic who is an anesthesiologist and see if she can do these trigger point inj. to include steroids and than consult with her on Intercostal nerve block inj. Hey I keep trying.........
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Thu Apr 04, 2013 8:20 am

lovebug wrote:Hey I keep trying.........
LOVE this philosophy! :-D

http://www.prohealthmd.com/MHan/content ... gger-point
A common and highly effective treatment for trigger points involves a "trigger point injection" with lidocaine. The lidocaine has 2 effects on the trigger point: it numbs the area to provide immediate pain relief, and the liquid manually disrupts the muscle knot to break up inflamed fibers. Usually one trigger point treatment is sufficient, but for chronic or severe conditions, multiple injections over several weeks may be necessary.
I like how this author discusses TPIs. For muscle spasms (specific locations of pain/knots), TPIs with lidocaine do seem to work well, but I think for patients who also have general spasticity and its more widespread tightness, TPIs with only lidocaine might not be the whole answer. Will let you know what I find out from my doctor. Hopefully, your muscle spasms/knots are feeling better today.

EDIT- I forgot to say that if we don't need steroids, then that would be great and to start the process with the least amount of medication sounds like a smart place to start, albeit frustrating while waiting for pain relief to come. From all my previous reading, I had never come upon TPIs that were given w/o steroids, so I guess I assumed steroids were always given. Gosh, I wish I already knew everything there is to know.

~~~~~~~~~~~~~~~

Just realized I might have earlier caused some confusion with my intentions... while it's definitely time for me to move on and leave the first post--a hollowed place not to be entered again--I never considered leaving the thread because interacting with and trying to help people are always good for me. :)
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Re: MS Hug information - updated 4/2/13

Postby lovebug » Thu Apr 04, 2013 10:30 am

`HAPPYPOET` Why on earth would you leave this post? ?????? You have done everything to help me/us out with more information each day to help deal with our pain. If it wasn`t for you I would not be going down this road to help with my nerve pain which is EXTREMELY painful to deal with not only physically but mentally as well. After going to different classes at the pain clinic I realized that stronger forms of pain meds, may not always be the answer for all of us. After 4 years of trying different meds. I want to explore these different avenues now. Maybe no relief will be found but I want to keep trying...............If I could I would reach through this computer and say one thing to you-`Thank You`..........
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Re: MS Hug information - updated 4/2/13

Postby blossom » Thu Apr 04, 2013 11:14 am

[quote]/"happypoet"]I never considered leaving the thread because interacting with and trying to help people are always good for me.

happy poet, your compassion for others shines through. even though you have your own dark hole to deal with you give light to others. thanks from me too.
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Fri Apr 05, 2013 4:24 am

LOVEBUG, you're so VERY kind and sweet. I won't be leaving the thread--but even though the first post is incomplete, I do need to pull myself away from that part of the thread. blossom, you're a sweetie! Thank you, ladies. :D

I asked my pain mngt doctor about TPIs w/ lido, and she explained that it will only last six hours, at most, but that those injections can often help stop/relax a spasm. W/o steroids, though, they won't really help stop/relax spasticity. She said doctors also sometimes use "dry needling" (no medication of any kind) to help break apart stubborn spasms by repeatedly inserting the needle into the muscle knot w/o any numbing agent, such as lidocaine (ouch).

Nothing is easy as I was reminded again <sigh>. When I asked about Botox, my doctor said she doesn't give it. She seemed taken aback when I asked why not, and I had to press the issue as if it was some big secret--she said she doesn't have experience with it, the lack of which surprised me. So for Botox, it's back to my MS doc's office, but he only gives Botox via TPI, not INB, which means I'll have to search for a new pain mngt doc if I want Botox given close to the spine.

When she realized she was starting to lose me, she quickly added that if my MS specialist agrees, she can give what's called a "medial branch" block w/ lido + steroids which could help more of my pain and spasms than the NBIs she gave me last month. If my MS specialist says no, then I'll need to start the search for another pain mngt doc who does use Botox <sigh>.

I'll post about "medial branch" block w/ lido after I get a chance to search Google later.

To steal an expression from a new friend, "Hey, I keep trying........." :)

EDIT- Forgot to say my MS specialist denied me ESIs (epidural steroid injections), which would have helped me the most according to the pain mngt doc. The denial is because a couple studies show that if the steroid seeps through the epidural layer, it can exacerbate already-existing lesions on the cord which I want to discuss with him (can't find those studies), but risks of ESIs scare me anyway--arachnoiditis, needle injury to the cord, and more. Clinical experience really counts.
Last edited by HappyPoet on Tue Apr 09, 2013 11:17 pm, edited 1 time in total.
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Mon Apr 08, 2013 8:33 am

lovebug wrote:After going to different classes at the pain clinic I realized that stronger forms of pain meds, may not always be the answer for all of us. After 4 years of trying different meds. I want to explore these different avenues now.

I agree with you that stronger forms of pain meds aren't always the answer for all of us--the stronger the med, the stronger the side effects can be. Our central pain, spasms, and spasticity can be so hard to treat and most likely will require a combination of methods. For me, it's stretching, baclofen, Lyrica, Cymbalta, methadone, marijuana (for breakthrough pain, spasms, and spasticity), and TPI/INB injections. At this point in my journey, I'll take anything and everything that might help if it will help stop me from jumping off a bridge.

Iirc, medicinal marijuana is legal in Canada. Could you ask your doctor for a prescription, especially since the synthetic version didn't work? A Canadian on TiMS posted that he was able to find a doctor who prescribed MJ for his wife who benefited for years. He printed out studies re MS and marijuana for his wife's doctor to read. You might want to look into this angle.

About medial branch blocks- I don't think these will help me much because I don't have pain in my spine which is what these nerve blocks help. These injections only use lidocaine which, as we know, only lasts six hours. Will post my results if I have these injections.

lovebug, I have to say again how sweet and kind you are. People like you and blossom help make having this disease so much more bearable than it would otherwise be. :)
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Re: MS Hug information - updated 4/2/13

Postby centenarian100 » Mon Apr 15, 2013 2:42 pm

:)

I am feeling the love in this thread
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Re: MS Hug information - updated 4/2/13

Postby lovebug » Mon Apr 15, 2013 3:45 pm

It is truly amazing the information you can find from total strangers on this website. I have been fortunate to even have been able to personally meet one of my `internet` friends `MUSIC` through this website. We both had the CCSVI surgery done by the same dr., one week apart in california and live very close to one another. We still keep in touch.
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Mon Apr 15, 2013 4:22 pm

Hi 100 and welcome to TiMS,
Do you have any symptoms of the MS Hug? I sure hope not!

Hi lovebug,
I have an 'internet' friend, too, whom I met at TiMS. 'blossom' and I have met twice in person, but since we live far apart, we use the phone (a lot!). :)
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Re: MS Hug information - updated 4/2/13

Postby Fig8wife » Mon Sep 30, 2013 7:58 am

Hi my name is Teresa and am new here. I found this site because of my spasticity. I have not yet been diagnosed but have been having feelings like the MS hug and and spasms in my legs for hours at night that locky legs straight and point my toes. Nuerologist, pain management will not do anything for the pain. Don't I have the right to get relief? Just wondering if anyone had any suggestions. Thank you :)
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Re: MS Hug information - updated 4/2/13

Postby HappyPoet » Mon Sep 30, 2013 1:47 pm

Fig8wife wrote:Hi my name is Teresa and am new here. I found this site because of my spasticity. I have not yet been diagnosed but have been having feelings like the MS hug and and spasms in my legs for hours at night that locky legs straight and point my toes. Nuerologist, pain management will not do anything for the pain. Don't I have the right to get relief? Just wondering if anyone had any suggestions. Thank you :)

Hello and welcome, Teresa,

Spasms can be so painful, I know. Perhaps your primary doc can help you; ask for a script for Lidocaine patches and/or cream for your ribcage and leg spasms. Docs usually don't mind prescribing these because they don't go through the bloodstream, don't affect other meds, and don't cause addiction. I'm not exaggerating when saying that the patches saved me--they DO help. Your primary might also be able to give you trigger point injections in painful areas on your torso/ribcage/back. In addition to trigger point injections, I get intercostal nerve blocks from my pain management doc which greatly help.

Get second, and even third, opinions from other neurologists and pain management doctors. Do NOT give up looking for help.

Best wishes.
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Re: MS Hug information - updated 4/2/13

Postby vesta » Tue Oct 01, 2013 2:10 pm

One should be aware that one can suffer acute pain and/or spasticity because of a "blocked" meridian (Chinese Medecine theory) rather than a damaged nerve or any other obvious organic disorder, and that treating the meridian can alone eliminate the pain. Also one can treat oneself by simply palpating the correct points – better yet, Tens Acupressure. See the following

Tens Acupressure Self Help

TENS stands for Transcutaneous Electrical Nerve Stimulator
which is sold to deliver small electrical impulses via electrode pads placed on the skin to ease pain. However, I
use it to stimulate acupuncture points (Acupressure) to open blood and
cerebrospinal fluid flow through the Central Nervous System. I use a
small 9 volt battery powered apparatus (3.5¨ x 2.5¨or 9 cm x 6.5 cm).
It has 2 controls linked to 2 leads which branch into 2 pads each, thereby
giving the possibility of stimulating a total of 4 acupuncture points at a
time. It can be purchased on the Internet in the US for about $50. I
ordered one from England summer 2010 which was a bit more expensive. (You have
to buy a supply of pads as well which come in packages of 4. The
pads are adhesive. Eventually they stop adhering so I use tape for a while
to extend their use longer.)

I was certified as an Acupressure Massage Therapist by the Berkeley Acupressure Institute in 1987. I
began receiving Acupuncture treatments by a Chinese trained Doctor in San
Francisco in January 1981. I’ve continued getting Acupuncture treatments ever
since, now about once a month. After I began to learn the Acupuncture meridians
and points, I could identify them when the Acupuncturist was applying the
needles. I therefore have nearly 32 years experience as an Acupuncture patient,
and 26 years as a therapist (for family and friends), which is to say I have a good idea of what works
for an MS patient (in this case me).

In the late 1980’s my San Francisco Chiropractor, aware of my knowledge of acupuncture points, recommended
I treat myself with a TENS and ordered it for me since at the time it was
considered a medical device unavailable to the general public. Subsequently
I ordered new pads from her as the old ones wore out as well as extra wire
leads. After moving to France spring 1992, I renewed my stock when visiting the Bay Area. Unfortunately May
1993 I listened to a Parisian Acupuncture Doctor who discouraged me by saying
the Tens wasn’t effective. Why did I listen to that jerk, he wasn’t even a
good Acupuncturist? I was using the TENS mostly to treat urinary tract
infections and was frustrated I could use only 4 pads at a time since I was
attempting a more complicated Acupressure treatment than was necessary. After
1997 I couldn’t renew my stock of pads and basically stopped all treatments. How
I regret having done so.

When in August 2010 I read on Daily Kos about CCSVI Liberation Therapy, I immediately ordered a TENS
machine with a supply of pads from England. I had learned that a neck/back
massage moving the blood towards the heart could stop an MS attack. Then
one evening while alone I could feel all the warning signs of an MS
attack. I performed a TENS self acupressure treatment which relaxed me
slightly but I was still worried about what the next day would bring. Well, the
next day, the “attack” was gone. Just stopped in its tracks. That never
happens without treatment. In fact once the MS process begins the stress feeds
on itself, stress triggers it off and then the anxiety exacerbates it. In
the past I could stop an MS relapse by getting an acupuncture treatment, but
getting to the Doctor can be complicated, take time, and the delay means some
nerve damage. I had no idea I myself could stop the attack before it takes hold
and does damage.

Recently the TENS again proved its usefulness. For years I’ve been awakened about 3 a.m. with a pain
running down the outside of my “good” left leg. I know this to be the gall
bladder meridian that must be “blocked”, hence the pain. One night I was
overwrought, could feel my legs freeze up, knew that the blood must be surging
back into the CNS, couldn’t sleep. So I got up and did the TENS treatment I’ll
now describe. The pain in my leg gradually subsided, I relaxed and could finally
go to sleep. (I have no idea how this corresponds to the nervous system. I know
what the pain means in terms of Chinese medicine and how to treat it, so I’ll
just be satisfied with that.)

The basic principle is to balance 2 Yin points with 2 Yang points. The Yin Organs "nourish", the Yang
"protect". One can consult the Acupuncture meridians on the internet at YinYangHouse.com.

My original self treatment should be of use to every MS patient. I start with Spleen 6 which is a powerful Yin point. Called the 3 Yin it is the intersection of 3 Yin meridians - the Liver, Spleen and Kidney/Adrenals.
(Warning – Don’t use needles or “moxa” on a pregnant woman. It’s
good when giving birth.) The Spleen meridian runs up the INSIDE of the leg.
I place 4 fingers at the top of the ankle bone along the leg bone, at the last
finger I press into the leg to find a sensitive point, that's it. I
place a pad over this point. Then I find the Yang Gall Bladder 34. I find
the small bone on the outside of the knee. I press just below, slightly inside,
this bone, (when an acupuncture needle is used one can feel an electric impluse
down to the ankle.) I place a pad over this point on the same leg
as the Spleen 6. I then do the same thing on the other leg with the second lead
Again I slowly turn on the "wheel" controls of the TENS unit to
feel the electric impulses.

Drop Foot: If you increase the electric impulse on Gall Bladder 34 it will stimulate the "releveur" muscle and
lift up the foot. This is the "drop foot" muscle and if I had known this I would have tried to keep this muscle
working on my right side. (The muscle still works as a reflex, but I
can't make it work. Maybe continued stimulation will revive it, but at any
rate I will do everything to avoid losing the left side.)

As an alternative Yang point I place the pad in the middle of the back of the knee which is Urinary
Bladder 40, thinking this will open circulation from the spine. However, it can cramp the calves, so I go slowly.

In addition I now work the upper back point to open fluid circulation from the brain. I place a
pad where the outside of neck meets the shoulder in line with the nipple,
slightly below the top of the shoulder. This is Gall Bladder 21 "Shoulder Well".
(Acupressure points are sensitive so I poke around until I've found the
point.) This Gall Bladder point "clears up" my head and I'm convinced it opens
the blood flow from the head. For the complementary Yin point I use
Spleen 10 which is found about 3 fingers up from the knee on the middle of the
inside thigh. (An alternative would be Liver 9 found one third up the
inside of the thigh between the muscles.) Again, these will be very
sensitive points. I place the pads from the lead on one side and then repeat the
process on the other. Now I slowly turn on the "wheel" controls of the TENS
unit to feel the electric impulses. (I don't touch the pads with my
fingers when the unit is "on", the finger tips are very sensitive.) I get
immediate relief with the upper back points. Also, if I start to have
an "attack", this will stop it. Sometimes I'm not really aware that an attack
has stopped, but by next morning the symptoms are gone.

I don't know how effective this self-treatment will be for others. Since I now believe my
first known MS attack struck the upper spinal cord, it may be the upper back
GB21 point may be more effective for me than others. The GB34 knee point has
almost ALWAYS been used in my Acupuncture treatments so I believe it should be
of use to everyone.

These treatments have changed my life. I used to live in dread of a breakdown. I can now control the
stress and prevent “attacks”.

One observation. I just looked up Tens Acupressure on Amazon to find it has become all the rage. Even 3
years ago I don’t think there was the choice of TENS that exists today and
previously they were sold for pain treatment, not for Acupressure. Also one can
buy an Acupuncture point “pen” which lights up when the point has been detected.
Books are also available. There is no need to pay more than $100 (even $50). At
such a minor investment, why not give it a try?

If one has doubts about my suggested self help treatment, by all means ask your Acupuncturist. But don’t
allow yourself to be discouraged. If she doesn’t agree with my suggestions, then
insist that she demonstrate another treatment plan. Don’t allow yourself to be
discouraged away from self treatment. I’m not suggesting one should forego treatment
by a professional. Rather, the professional should assist you in daily self
treatment as a complement to his work. Otherwise he may be trying to monopolize
the treatment for financial gain, or has what I call a Zorro complex who
wants to play the rescue hero or is a control freak.

One further comment. If one suffers acute spasticity and wants a professional therapist, I believe one should be treated first by Acupressure since I've found Acupuncture needles can trigger an even more acute spasm. Also, one should be aware that one can suffer acute pain because of a "blocked" meridian rather than a damaged nerve or any other obvious organic disorder, and that treating the meridian can alone eliminate the pain. Also one can treat oneself by simply palpating the correct points.

I now give myself a Tens Acupressure treatment every morning. Sometimes I wake up with a groggy depressed
feeling which implies the fluids are stagnating in my brain and afterwards I
always feel better as the depression lifts. This is especially true during the
winter when I can’t swim or get enough exercise. Sometimes I don’t feel the treatment does much,
especially during the summer months. But I do it anyway, part of my daily routine like brushing my teeth. And I ALWAYS do it if I'm having a stress attack or am upset. Once someone really offended me and I put off treating myself until morning. The next morning the nerves controlling my "good" left foot had been damaged. Big mistake.

Additional information on my take of how Acupuncture theory relates to MS can be found under the blog post Acupuncture and CCSVI.

MS Cure Enigmas.net
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