MS Hug or Kidney Problems? That is the Question!

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Well this past week I was having massive pain in my lower, left back where the rib cage is. Mind you, I have had the ms hug way too many times to count but holy moly it was bad. Nothing seemed to work as quickly as previous times.

The pain started last Wednesday but was mild and bearable so huh no problem. As the days past the pain started to intensify. However, I have so many body pains I tend to ignore the smaller things so I just happened to overlook the pain until Friday when I noticed it was inflaming more.

By Saturday, I didn’t want to move I was in so much pain. It was so bad, I was actually considering going to the ER and I never do that unless I am in dire straights. Because if I went every time something was wrong I’d never leave … sad but true. So because I was unsure what was causing the pain I began drinking cranberry juice and cherry juice for the kidney which normally takes the pain away or minimizes the pain within hours of drinking but I didn’t notice a difference. Then it hit me, it may be the ms hug.

The ms hug can literally hit anywhere in the rib area. It can be on one side, or a lower part of the rib cage or the whole rib cage. Believe me the whole rib cage is excruciating. So with this in mind I started placing ice packs on my breastbone and upper spine. By placing the ice packs on these areas it helps calm down the ms hug greatly compared to just meds alone. Think Of the breastbone and the upper spine like piano keys when it spasms it effects areas of the rib cage that is why placing ice packs on those areas help reduce it quicker … it helps calm it down.

I first laid down and place the ice packs on those areas for about an hour and a half during the day which isn’t long but I have a family so that is all the time I had. Later that night when I laid back down I placed ice backs on my breastbone, upper spine and on the area that hurt just in case it wasn’t the ms hug. Also, because I was unsure what the pain was coming from I did continue to drink the cranberry and cherry juice throughout the weekend.

You may be asking yourself how does cranberry and cherry juice help the kidneys. The cranberry juice is what cleans and rids the toxins from the kidneys. The cherry juice works in a similar manner but with regards to the liver. That is why I do both to help them stay healthy to avoid future complications with them. Mind you I have been doing this for over 20 years since I was 16 years old … that is when my kidney problems started and presented with pain. Also, with me having chronic EBV it can effect your liver and causes it to enlarge so a ounce of prevention is a pound of cure.

By Sunday morning, my kidney or the ms hug was a lot better than Saturday. On Saturday I was in so much pain, I felt as though I was going to collapse, my legs felt weak and wobbly and I had the shakes very badly along with the kidney / ms hug. But by Sunday the pain was greatly reduced but still very painful but bearable … Amen!

Today is Monday and I did the same routine yesterday and last night. I drank cranberry juice and cherry juice and later in the night packed myself with more ice and now this morning I am doing a lot better. It only hurts when I twist my waist but a lot more bearable. Thank you God and for all those who prayed for me. It was greatly appreciated.

So hopefully by tomorrow, the pain will be completely gone. Keeping my fingers crossed. Big hugs to all and have a beautiful week.

Giggle Time: Chiari 1 Malformation or CEBV or Something Else?

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When odd things happen to me I just laugh them off and so does my family. Laughter is the best medicine when dealing with chronic illnesses. I am going to share something which is short and sweet but really funny. I, however, am not sure what condition this is related too. I do believe EBV can cause more severe symptoms than reported. At this point in my life I have had CEBV (chronic ebstein barr virus) for over 20 years.

Well let’s get to my funny. One night I was preparing everything for bed which I have a certain routine. After I got my youngest son to bed, I proceeded to turn the lights off which due to a positive romberg sign I need light so I work from the front to the back of the house towards my bedroom. But one special night my son turned off the hallway light and I thought I was good because my oldest son’s light was on … I could see fine then all of a sudden he hit the light switch to his bedroom off. Suddenly I bounced off the hallway wall and quickly returned to my normal standing position. I was like “what the hell just happened?” LOL. My son quickly turned back on his bedroom light and said “are you okay?” He asked what happened? All he heard was a loud thud. LOL.

The take away lesson is never trust others to leave their lights on for you … LOL. Just teasing. Needless to say my son now always leaves the lights on and always allows me to turn every light off for my stability. This happened several years ago and since then my balance and the dark has worsened so due to this I have night lights in the bathrooms, I keep my bedroom tv on all night to light the room in case I need to get up and I have special lights throughout the house to light my way through the night. They are motion activated lights and they are a life savor.

Good luck and Stay Strong!

 

Down and Out … but I’m Back!

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Sorry for all those following me for me not posting it has been a rough couple of years. What started all this off was a few years ago I threw a stick for a dog and well my knee went 3 different directions and I fell to the ground which tore my acl (and other ligaments) which they say now is incompetent. This lead to a blood clot in my leg, hospital stays, injections, and after 8 months was allowed to finally have surgery on my knee.

Shortly after that I was experiencing many more symptoms including balance issues (falling into walls) w/ a positive romberg’s sign, stuttering and slurring words, forgetting to breath, numbness and twitching of face, difficulty walking (feeling as though my leg is stuck to the ground or as if it didn’t get the signal to walk), more fatigue (which I didn’t think was possible), absent seizures and drop seizures and a bunch more. So my neurologist started testing for multiple sclerosis, lupus and all related conditions. When some blood tests came back it said I was negative for lyme’s disease but then the neuro said I should see a lyme literate doctor (LLMD) due to some of the bands that were high and showed it was chronic. He stated they were highly related to lyme’s disease. Due to all the debate over these bands in the medical community and the large out of pocket cost because most of these docs do not take insurance so it can get expensive I opted not to see the LLMD.

A month later my brain mri came back and showed I had chiari 1 malformation which could cause all my symptoms. Chiari can cause over 80 different symptoms to be exact and is considered one of the conditions that can mimic multiple sclerosis. Upon going to a chiari specialist neurosurgeon, he stated not only do I have chiari but a syrinx in my thoracic spine which is caused by the chiari blocking the flow of cerebral spinal fluid (csf) which allows the csf to seep into the spinal cord which causes various nerve problems and interrupting the signal to various body parts to move, etc.

So the neurosurgeon (NS) scheduled me to go into surgery 5 months later for chiari decompression. Normally when the chiari is addressed with decompression surgery the syrinx will shrink thereafter but it can take up to 1-2 years however the damage it has done may remain. With me the pain and symptoms have remained. I am looking to get another mri of my thoracic area after my appointment in July with my NS along with one of my skull/brain to ensure no fluid has collected.

I will be writing another blog post on my experience with the chiari surgery and all the various complications I had. Do to the many complications I have had routine csf spinal taps during the hospital stay and towards the end my csf spinal fluid still showed inflammation which I am somewhat attributing to the EBV but to be sure I will be seeing a neurologist and have them test my csf via spinal tap for MS and any other related conditions that could be causing the inflammation. Once this is done I will post the results.

I have heard through various online sources that EBV can effect the csf in the spine and cross the blood brain barrier which I would think can also mimic MS if it does this. Also, a year ago after a brain mri it was noted on the report that I had a lesion but they were not sure what caused it. All they knew is that it was not a stroke or TIA (mini-stroke). So I will be interested to see over the past year if anything has developed.

Stay tuned for my journey with chiari and syringomyelia (spinal syrinx). This is where it gets crazy w/ a 3 month stay and massive complications but through it all I stayed strong and even helped other patients in need. Pay It Forward! Big hugs to all.

PS Also if you research chiari 1 malformation do not exclude it from the possibilities of conditions based on the images you see on google, etc many are very dramatized. When I first saw it on a ms group as a possibility and saw the pictures showing it … I thought no way can a radiologist and a neurologist miss that … I was wrong. 1 in 1000 is believed to have it and it is missed a lot more than you think and it is critical to see a chiari specialist or you will just be wasting your time with all the neuros who know very little to nothing about it.

Here’s a YouTube Channel with tons of info on Chiari 1 Malformation and related conditions: https://www.youtube.com/channel/UCv2ze79ULx2m772UDUVTSww

Good luck and big hugs!

 

 

Happy Mother’s Day!

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Just posting a quick … Happy Mother’s Day! 🙂

Poems just for You!

Mother,
You’ve given me two things
One is roots
The other’s wings

– Anonymous

Happy Mother’s Day – Anonymous

Celebrating the meaning of Mother’s day.

“Happy Mother’s Day” means more
Than have a happy day.
Within those words lie lots of things
We never get to say.
It means I love you first of all,
Then thanks for all you do.
It means you mean a lot to me,
And that I honor you.

But most of all, I guess it means
That I am thinking of
Your happiness on this, your day,
With pleasure and with love

Happy Mother’s Day!

CEBV and The MS Hug … Ribs Squeezing Pain

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The MS Hug, not just for MS (Multiple Sclerosis). 

Do you sometimes feel as though a gorilla is giving you a huge hug around your rib cage and the result is PAIN! Yes, that is the MS Hug. You may experience this pain around your entire rib cage or just part of your rib cage.

Here is an excerpt from About.com on MS Hugs:
http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

How Common is the “MS Hug?”

This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.

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.

What Does It Feel Like?

Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

  • As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
  • Focused in one small area (usually on one side or in the back) or go all the way around the torso
  • Worse when fatigued or stressed
  • Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
  • Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure

How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.

Hope you find this helpful. I was experiencing the MS Hug for years so I thought you may find this helpful if you are experiencing the same pains.

Side notes: you may still experience MS Hugs without having MS. It’s called Costochondritis.

How to Get Relief from the MS Hug aka Costochondritis!

The best way I have found to  calm it down is with ice packs (I prefer the gel kind) on the breastbone and upper back following the spine downwards. This is the best way I have discovered to relieve it quicker. You can also take one or two of your muscle relaxants such as; gabapentin, valium, flexeril, robaxin … whatever meds you have to assist the process but ice packs is a given with it or you will be waiting a lot longer for it to subside.

Good Luck and Big Hugs! Stay Strong!

UPDATE! As of 2017, I recently was made aware that fibromyalgia can also cause costochondritis … just FYI.

 

CEBV, CFS Hibernation … Don’t You Love The Winter Months?

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If you have CEBV … I think you know what I’m talking about. From Late Fall to early Spring my CEBV symptoms get worse especially the fatigue. If I could sleep for weeks on end I probably could with no problem.

Let me know if the these months are worse for you. I think it has to do with how the weather shifts. I am aware that if we are getting a bad storm, snow or rain, my body’s pain intensifies to the point I do not want to move.

When I first came down with CEBV, over 13 years ago, all I could do is lay on the couch. When I say lay on the couch I mean lay completely flat on my back so my whole body could rest. If I did not lay completely flat I could feel my tendons, muscles … pulling in pain. Until I got CEBV I was not aware of these muscles, tendons etc. We all know we have them but to feel the pain feathering out though every tendon, muscle and joint, bones…is pretty bad. At times it feels as though my ribs are going to crush me. My ribs will have a crushing and an electrifying shock just by moving … twisting, breathing, etc.

To make things worse, for me to even get off the couch I had to ask my 3 year old son to help pull me up because my body was so weak I could not sit up on my own. I could not wash dishes…just standing I would get extremely shaky and feel as though I’d collapse. My body was literally losing the battle the EBV was taking over every part of me. I was having all over body pain (muscles, tendons, joints), chest pains, kidney, liver pains and not to mention head pains. I could feel the veins in my head swelling but the mri and cts said I was fine…lol. I could touch my head where the veins were and you could feel the swelling veins but they said nothing was wrong. Visual disturbances, ringing in my ears … photophobia. Seriously in my experience if something is out of the scope of the doctor or they don’t want to bother researching … they won’t. They are useless. I only go to the doctors for basic symptoms that I know is not related to the CEBV but sometimes it takes me a while to realize if it is or not. Because CEBV also causes me nauseous and swelling throat…I drink coffee all day and it seems to help. When I first came down with this I also noticed hostess donuts would help with the nausea. (Just FYI)

The doctors tested me for everything under the sun and only until my mom got it were they able to diagnose it…this was about 6 years later. In the mean time I was diagnosed with secondary symptoms; photophobia, heart problems – my heart would throw in extra beats or skip beats, speed up what ever it wanted to do, hypertension (was put on a beta blocker), my knees needed to be replaced but I did not follow their recommendation for this. I asked them could they tell me what the primary cause was and they said no. I knew if I had my knees replaced it would be a miracle if I made it through the surgery due to how weak I was and that is not even saying that my body would except it. Considering my body was rejecting everything else…I knew it would reject the new knees. To boot at this time in my life I was only 22 years old…how awful is that.  All this by the time I was 22. Life is just beginning and I am done before I even start.

After spending this many years with CEBV my only advice is to seek a competent doctor who is aware of CEBV otherwise your wasting your time. Once you find that doctor they will only be able to treat your secondary symptoms because there is not enough research on CEBV. You simply need to rest and not over due. You may also notice if you do too much activity that you may begin to vomit and get diarrhea…so rest. We have every symptom in the book … just rest.

Accept what you can do and don’t get depressed over what you can’t…this has helped me through.

Some activities that my mom and I do to get me through the day…unfortunately it’s couch potato stuff but be thankful for the internet, facebook, video games, netflix, wordpress – start a journal to get out frustration or daily activities, struggles and don’t worry too much about spelling…be thankful for spellcheck…I am. Smile   Remember it takes  years to build up your resistance to do some of these things. If you are new to CEBV just watch TV flat on your back the rest is for those use to their limits …. just be sure to listen to your body, if it says lay down …lay down … which is pretty much all the time but I am referring to if you go to the bathroom and the room starts spinning or what ever beautiful symptom you may display at that time.

PS if a doctor calls you a hypochondriac…find a new doctor that doctor is a flake for not doing their research. I’ve heard this one before. Doctors say this when they are lazy and don’t want to bother with helping you or do their job. My mom found a great doctor who is an internal med doctor and a liver/kidney/spleen doctor might be able to diagnose you. (Sorry forget the name of specialist hepat….something. LOL. Smile

Good luck and keep in touch.

Update: MTHFR Protocol and Affects on Diabetes

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Since finding the MTHFR Protocol I have been taking the methyl-B12 (20mg daily) and methyl-folate (3200 daily). I have found that I have increased energy…very little though. I am still in the stage of adjusting these doses to get the maximum benefits. I believe if it wasn’t for the chronic fatigue syndrome (cfs) and chronic epstein barr virus (CEBV) these doses would be very beneficial for the MTHFR.

As a side note, my mom has the same conditions plus diabetes. Before giving her the methyl-B12 and methyl-folate she would have pains in her legs which made her dread walking also her sugar levels were out of control plus her good and bad cholesterol levels were at war with each other…HIGH! The doctors tried and tried time and again to control these factors with no success. With the MTHFR and especially the CEBV irritating these levels one moment her sugar levels would be an 8 and the next 320 – her levels would be erratic. She also has a history of multiple mini-strokes and a fatty liver/non-alcoholic liver. Once I researched the MTHFR protocol further along side of clinical trials then I placed her on a regimen of vitamins.

This is the vitamin regimen she is currently on;

Methyl-B12 (5000mcg 2x daily): This proved to relieve the leg pains 90% when she misses a dose the pain rapidly returns. The protocol also stated that the methyl-B12 would assist / normalize the management of sugar levels and cholesterol…along side the methy-folate. Brand I prefer is WonderLabs Methyl-B12 and Jarrows is another good alternative.

Methyl-Folate (1600mg 2x daily): This was taken with the methyl-B12 for the most benefits. Research has shown that the majority of B12 deficiencies stem from a folic acid deficiency.

P5P (25mg 2x daily): This in combination with the above vitamins has proved in clinical trials to greatly reduce strokes at 50mg a day.

Basic B Complex by Thorne Research (1x daily): Taking a B complex is important in case there is other deficiencies. If there are other deficiencies within your B complex for example B6 then the B12 will try to compensate for this deficiency. This specific brand of B Complex are all active forms of the B supplements.

Now Foods Spectrum Multi-Mineral (2x daily): Further support for B supplements. While using the B vitamins it may deplete your iron, potassium and others.

Silymarin WonderLabs (1 daily for 2 weeks than 1 every other day): Further research has shown this reduces liver inflammation and rids the liver of toxins thus improving liver function. I alternate this, once a month with Now Foods Liver detox-rejuvenator. This also assists with clearing out toxins in the kidney and lymph nodes. She takes the Liver detox for 1-2 weeks then switches back to the silymarin.

With the above vitamin regimen after 2 months she has expressed that her vision is more defined, her legs no longer hurt (as long as she continues taking the B12), her doctor has checked her good/bad cholesterol levels and they were well within the normal range … which made her extremely happy that it is under control. Her doctor also reported that her sugar levels were normal and liver and kidney function tests have vastly improved. She has also tested her sugar on a daily basis since starting the above regimen and has noticed no erratic fluctuations….so everything seems to be working wonderfully. Plus in addition to the positive outcomes of the tests, she was also taken off of 2 diabetic meds.

Taking the above regimen she has also noticed more energy but just enough to stay awake about 2 hours longer than her norm. (Of course this is due to the CEBV).

***Please consult a doctor prior to making any changes to your regimen. This is for my reference/journal and is for informational purposes only.***

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