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First Name
Peggy

City
Sarasota

State/Province
FL

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United States of America

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Posts (31)

Sat, Feb 2 4:39pm · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

ARACHNOIDITIS & MUSCLE CRAMPS
Hi. I’ve had numerous spinal procedures: 3 myelograms, diskograms, spinal taps, epidurals, nerve blocks, C/S surgery and L/S surgery, both with instrumentation. Result, about 11 years ago: Arachnoiditis. Unbearable cramps in both arches of my feet with every step.
My neurologist put me on pramipexol (furfural acetate). It is a Dopamine agonist/promoter. It’s used to treat Parkinson's disease and restless legs syndrome, but also reduces the frequency of my cramps from Arachnoiditis so I can walk. The cramps are worse at night.
Other brand names are Mirapex, Mirapex ER. By prescription only. Fortunately, I don’t drink alcohol as it can cause an interaction.
There are side effects, so read up on it before deciding to take it.
I’m starting to wonder if pramipexol is what has radically worsened my bladder incontinence. I plan to ask my neurologist in 2 weeks.

Mon, Jan 14 6:14pm · Anyone Else With PTSD? in Mental Health

Same here. My father. 11 years. Even though PTSD caused anxiety, depression, OCD and wreaked havoc on my health in general until I have over 30 diseases, am in chronic pain and disabled, I’ve overcome the pain from the trauma… 99%. I’ll never be 100% over it until I see Jesus face to face.

Mon, Jan 14 12:59pm · EXCESSIVE SALIVA for 2 yrs ~Not from GERD~ From gastroparesis? Help! in Digestive Health

Thank you so much. I will ask my doctor about these possibilities. I don’t know what to do, so any information I can get is helpful. Peg

Sun, Jan 13 11:26am · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hi, Peggy Lee @pfbacon My name isn’t Margaret either! Cool. I’m Peggy Ella. I get what you mean. Have you tried the CBD yet? There’s no THC in it and doesn’t make you high. I’m not a doctor, but could you be allergic to the THC in MJ?

A loved one with AIDS for over 22 years uses both and it has prolonged his life the last 2 years and improved his quality of life greatly. He was really at the end when I literally took him to my neurologist. My doctor treats lots of people with cancer and a myriad of other terminal, chronic and painful conditions.

You can find me on FB or Messenger under Peggy Knoth. My profile shows COAST Ministry. Ignore the old profile. If you would like to talk or I can help in any way, please don’t hesitate to contact me.

Sun, Jan 13 6:35am · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hello, Peggy @pfbacon. Yes it is similar but different at the same time. The MJ comes in many forms. In 8/2016, my neurologist started me on CBD caps 3x/day and a THC vape before bedtime for my insane insomnia and many other conditions. Prior to that, I suffered from the effects of 30 diseases (I know it sounds crazy!) and I could not sleep anywhere from 3 days to sometimes 6-7 days in a row.

As a result, for two years I passed out several times a day with injuries. After passing out through a glass table, I ended up at the Mayo Clinic from 8/2016 – 3/2017. At the end, I completed the 120-hour (21 day) Pain Rehabilitation Center (PRC). They are adamantly opposed to ANY form of narcotic for pain and that includes MJ. So I went off it. Since that time, ALL my symptoms have worsened and it has destroyed my finances from medical expenses. THE MJ reduced my pain, anxiety, depression and insomnia.

I give the PRC credit for teaching me to re-train my brain to FUNCTION IN SPITE OF PAIN. They helped me get out of a wheelchair so I can walk with a walker. That is amazing except that it is becoming more and more painful and difficult to walk. Many of my conditions are neurological, untreatable and incurable (peripheral neuropathy, degenerative disk disease, osteoporosis, osteoarthritis, fibromyalgia, tardive akthenesia, neurogenic bladder, Arachnoiditis, migraines, gastroparesis, GERD, and many more.)

The PRC weaned me off Klonzapam (Clonopin) for major anxiety disorder, which I had been on 10 years, and said no one needs it. I am glad they did because it kept me from functioning. My memory and cognitive abilities were greatly impaired. However, it caused all my symptoms to increase to the point that they’re nearly unbearable.

Because of the severity of my symptoms from anxiety which began when I was abused for 11 years as a child, I have advanced Bruxism (grinding/clenching my teeth). The MJ reduced the grinding. Within eight weeks of returning from the PRC on 3/31/17, I broke all 28 teeth. I’ve suffered tremendously since then. Long story short, I paid $15,000 last year to have porcelain implants in my upper gums. I could not afford another $15,000 for porcelain lowers.

In 12/2018, I developed two infections in the upper teeth that the porcelain was attached to and had to have seven of them extracted, including the teeth themselves at a cost of $2,400. If I hadn’t, a third oral surgeon confirmed that I would have developed sepsis and could have died at my age of 65 and being in such poor health.

The remaining teeth are extremely painful and I have lost 6 pounds already because I can only eat soup. I am trying to save another $12,000 to have the the last eight teeth extracted, get two implants so I can wear dentures and an upper porcelain bridge. This is very traumatic and doesn’t help my PTSD or pain.

So I have an appointment with my local neurologist, one of the country’s top authorities on MJ and one of three Florida physicians permitted by the State to prescribe MJ prior to the Amendment to approve it in our state. I INTEND TO GO BACK ON CBD AND MJ.

WARNING: The CBD alone was not enough to bring me relief so I need the THC, also. The PROBLEM WITH MJ is that everyone’s system is sensitive to it and the DOSE AND EFFECTS VARY WIDELY FROM PATIENT TO PATIENT. THERE EXACT DOSE IS DIFFICULT TO DETERMINE, SO START AT A LIW DOSE and work up if necessary.

When I was using the MJ Vape, the prescription was to inhale for three seconds, 15 times prior to bedtime. I repeat, DO NOT START AT THE PRESCRIBED DOSE. It would have blown me away. IT DOES MAKE YOU HIGH LIKE THE POT FROM THE 60s. I know, because I used to smoke it before I learned to deal with the abuse. So I reduced it to seven inhalations. That was still too much for my body, so I reduced it to five. That seemed to be enough to make me very relaxed and able to sleep. I still would NEVER DRIVE after using THC.

I do not like feeling high. I know someone very close to me who had severe problems from being on MJ. Being a recovered alcoholic and drug addict, he enjoyed the high and insisted on inhaling and/or ingesting the prescribed dose. It made him a zombie and put him in a very dangerous situation of possibly driving under the influence and being arrested, injuring or killing himself ir others or being able to function. His eyes were always bloodshot, he slurred and rambled when he spoke and he staggered when he walked. It took over a year of family and friends trying to convince him to reduce or stop the MJ. SO IF YOU CHOOSE TO USE MJ, USE EXTREME CAUTION. It can be very helpful, but you NEED AN ACCOUNTABILITY PERSON in your life so that if you cannot see how it is affecting you, they can. You must listen to them if they tell you that it is too much for you!

I trust my husband and daughter to be honest with me. And because of my drug and alcohol background which was many decades ago, I have enough common sense to see for myself if it is beyond what is reasonable or safe. Do not be afraid to try it, but please be cautious. And to be honest with your doctor who prescribed it. If you feel that it is too much, there are always different methods, strains and doses that she/he can prescribe.

I hope this information helps you. Good luck to you and God bless you.

Peggy @peggyella

Sat, Jan 12 2:26pm · EXCESSIVE SALIVA for 2 yrs ~Not from GERD~ From gastroparesis? Help! in Digestive Health

I’ve had severe GERD for 30 years and been on just about every kind of acid reduction medication. One of the side effects of long-term use is osteoporosis which I developed over 10 years ago. I’ve broken several bones since then. It all started with a chronic cough when I was in my early 30s, and after being treated with antibiotics many times with no success, I was sent to an ENT specialist who diagnosed me with GERD. I thought that was ridiculous but when I started on medication, the cough went away. Unfortunately, the break-through periods of burning acid has caused many other stomach condition.

Two years ago I started coughing again but this time I could not lie down at all and had to sleep sitting up for 10 months while they tested me trying to figure out what it was and what to do. Eventually, in January 2018, I had a fundoplication (1/3 of my stomach was wrapped around my esophagus). It did stop the cough but not another primary symptom that I still have after two years:

HAS ANYONE HEARD OF SOMEONE HAVING EXCESSIVE SALIVA IN THEIR MOUTH CONSTSNTLY? AS THE DAY GOES ON AND IT WORSENS, I FEEL LIKE I’M DROWNING! I take 20 mg. omeperazole twice daily with no relief.

My gastroenterologist decided it was not the result of reflux but probably gastroparesis which I’ve also had for many years. He said the only solution was a PACEMAKER implanted in my stomach to make me digest food. I have put that off for almost a year because it seems radical, and from my research it is not always effective and varies from person to person.

I was also seen by an ENT again who thought it might be from my salivary glands secreating too much saliva. He did a scope on me and they appear normal. He said they do not go inside them unless they suspect cancer. So I went on a medication to reduce the amount of saliva one secretes. It did not help so they increased the dose and that did not help either.

I am back at square one AFTER TWO YEARS AND AM GETTING DESPERATE! I don’t want to go to the wrong specialist. Have any of you ever experienced this or heard of it? And does anyone have any ideas what this could be from?

Tue, Jan 8 6:19pm · mild gastroparesis with severe symptoms! in Digestive Health

GASTROPARESIS. I certainly am not an MD, but I’ve had advanced gastroparesis for at least 20 years. Gastroparesis is a condition that affects the stomach muscles and prevents proper stomach emptying. It requires a medical diagnonis often through lab tests and imaging. It’s chronic and can last for years or a lifetime. Because food takes days to digest, I do not absorb nutrition or medication like I should.

Several years ago, I was hospitalized for months when I could not even keep water down. I received Reglan IV and other meds, as well as glucose. By the time I went to the hospital, I was too weak to stand and was depleted of potassium and magnesium. More IVs. FYI, if you ever need posassium via IV, insist that it be set on a VERY slow drip. It burns. The slower it is, the less it burns. It takes hours but worth the wait.

One common test is a food-swallowing test (although the results can be a false-negative as in my most recent test). I’ve had endos where I’ve fasted for the procedure and my gastroparesis surgeon still had to empty the contents of my stomach. Food I had ingested days before we’re still sitting in my stomach.

I tried oral Reglan (metoclopramide) but went off it because of possible devistating side effect called tardive dyskinesia (a rare but serious movement disorder that is often irreversible). I ended up developing it’s cousin, tardive akthenesia (similar, but not as severe). Since I was misdiagnosed as bi-polar four years ago and put on Latiuda and then Safaris, I cannot stand still without involuntarily shifting feet rapidly. So I definitely cannot ever go back on Reglan.

Then I tried Domperidone, NOT APPROVED BY THE FDA. It’s available in Canada, Europe and a few other countries. It did not help me and has possible cardiac side effects. If you try or are taking this drug, please have an EKG before starting it and keep up with follow-up EKGs. If you are an older patient and already have a known cardiac disease, it should be used with extra caution.

For the last two years, the food that sets in my stomach has been causing an acidic foam to rise up into my mouth. It is miserable to live with having to swallow every 5 seconds and sometimes makes me sick. I’ve had many tests, procedures (including Botox injections in my stomach) and a year ago I had a fundoplication (stomach wrap) where they wrap one-third of your stomach around the esophagus to reduce reflux. After the surgery, the symptom continued so they determined it was from gastroparesis.

My only option now is to have a pacemaker implanted in my stomach. It’s so drastic that I’ve put it off for nearly a year, but I am just about ready to proceed with it.

In the most severe cases, gastroparesis can lead to malnutrition, starvation and the need for continuous tube feeding. I pray mine does not go that far. I do not want to frighten anyone, but I urge you to seek a specialist who is familiar with treating the conditioning in the early stages. Also, follow a careful diet.

Tue, Jan 8 6:19pm · mild gastroparesis with severe symptoms! in Digestive Health

See my post below for an explanation of gastroparesis… a condition that affects the stomach muscles and makes it very difficult to digest food.