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Medical Marijuana and Neurofibromatosis

Suffering from chronic pain is debilitating. You’ll be understandably worried and unsure where to turn when you have a neurofibromatosis diagnosis. You may also be sick and tired of the side effects of taking conventional drugs. When considering treatment for this disease, you need to look at what neurofibromatosis is, its symptoms and its implications. To combat the negative side effects of opioids, using medical marijuana for neurofibromatosis treatment can help alleviate your symptoms.

What Is Neurofibromatosis?

 Neurofibromatosis, also known as NF, involves almost every organ system in your body. It’s a series of complex genetic disorders where tumors grow in your brain, on your spinal cord and nerves throughout your body. Half of all people diagnosed with neurofibromatosis have inherited the condition. However, it’s also possible for spontaneous cases to occur via mutations in your genes.

NF occurs in both sexes and all ethnic groups. Current treatments aimed at controlling your symptoms with surgery are often employed to alleviate the pain and appearance of tumors. There are three different types of NF:

  • Neurofibromatosis Type 1 (NF1)
  • Neurofibromatosis Type 2 (NF2)
  • Schwannomatosis

The tumors associated with the disorder are usually benign (noncancerous). But, they can sometimes become malignant (cancerous). Symptoms of NF are often difficult to notice, although there can be complications. These signs could include:

  • Severe pain
  • Blood vessel and heart problems
  • Hearing loss
  • Vision loss
  • Learning impairment

Your doctor diagnoses NF1 first by conducting a physical examination. Your physician checks your skin for cafe au lait spots (hyperpigmentation lesions) using a lamp. In addition to a physical examination, having a family history of the condition is a major component of an NF2 diagnosis. Your physician might recommend genetic tests, imaging tests (CT scan, MRI and/or X-rays) and an eye and ear exam as part of the official diagnosis.

History of Neurofibromatosis

Awareness of NF1 seems to date back to the 13th century. Mark Akenside, a poet and physician, published a science-based description in 1768 of the condition. At that time, scholars like Aldrovandi and Pare were recognized as suffering from nerve disorders. The neuromas of NF were initially described by Smith in 1849. However, Frederick von Recklinghausen is the man credited with the discovery of NF1 and named it in 1882.

Symptoms of Neurofibromatosis

The three types of NF each have different symptoms and signs:

Neurofibromatosis 1

NF1 usually first appears in childhood. Signs and symptoms are moderate but can vary regarding severity. It’s often apparent at birth or shortly afterward that you have the condition. It’s almost always diagnosed by age 10. 

Symptoms and signs include:

  • Tiny bumps on your iris (Lisch nodules). These are harmless, can’t be seen easily and don’t adversely affect your vision.
  • Light, flat spots on your skin (cafe au lait spots). If you have more than six of thesehyperpigmented lesions, you could have NF1. These usually show at birth and can also appear within the first few years of life.
  • Soft bumps below your skin (neurofibromas). These benign tumors tend to develop in or under your skin. They can also grow within your body. It’s known as a plexiform neurofibroma when a growth involves many nerves.
  • Freckling in the groin or armpit area. Freckling usually presents by ages three to five. These are not as big as cafe au lait spots, usually occurring in clusters in the folds of your skin.
  • Tumor on your optic nerve (optic glioma). These tumors rarely form in adults and usually appear by age three. They’ve also been known to show in later childhood and adolescence.
  • Short stature. Children with the disorder are often smaller than average in height.
  • Bone deformities. Deficiency in bone mineral density and abnormal bone growth may cause deformities, such as bowed lower legs or scoliosis (spinal curvature).
  • Larger than average head. Youngsters with NF1 have increased brain volume and therefore a bigger than an average-sized head.
  • Learning disabilities. It’s common to suffer from mildly impaired thinking if you have NF1. Some children have specific learning difficulties or ADHD.

Neurofibromatosis 2

NF2 is much rarer than NF1. Symptoms of the condition are usually the result of slow-growing, and benign tumors in both ears called acoustic neuromas. These are also known as vestibular schwannomas. They grow on the nerve that carries balance and sound signals from your inner ear to your brain.

The signs of NF2 tend to appear within your late teens to adulthood. They also vary in severity. Look out for the following:

  • Headaches
  • Ringing in the ears
  • Gradual hearing loss
  • Poor balance

NF2 may lead to the growth of schwannomas in other nerves. Areas affected may include the peripheral, cranial, visual and spinal nerves. Symptoms and signs of these to be aware of include:

  • Vision problems
  • Cataracts
  • Pain
  • Facial drop
  • Balance difficulties

 

Schwannomatosis

Schwannomatosis is a rare type of neurofibromatosis that usually affects you after you reach the age of 20. This type causes tumors on the peripheral nerves, skull and spine. It doesn’t have an impact on the nerve that carries balance and sound information from your inner ear to your brain. Schwannomatosis doesn’t cause the hearing loss that people with NF2 suffer as tumors don’t tend to grow on both of your hearing nerves.

Schwannomatosis can be a chronically painful condition and can cause pain anywhere throughout your body. Some other symptoms include muscle loss and weakness or numbness in different parts of your body

Visit your doctor as soon as possible if you or your child develops any of the symptoms above.

Effects of Neurofibromatosis

The overall severity in affected individuals who have Neurofibromatosis can vary significantly, which sometimes may be due to variable expressivity. Approximately half of all Neurofibromatosis cases are due to de novo mutations, and no other affected family members are seen. Typically this affects males and females equally, but some individuals may have mosaic Neurofibromatosis, which means some but not all cells of the body carry the mutation.

Living with neurofibromatosis is challenging. A study published in Genetics in Medicine discovered higher stress levels, more depression symptoms and lower levels of self-esteem in a group of 248 people with the condition.

Each person reacts differently to their NF diagnosis. When you have neurofibromatosis, you’ll likely experience strong emotions. You might be frightened of what the future holds. You could be concerned about potential changes in your physical appearance and how others might then react to you. You’ll also struggle with feelings of isolation and perhaps dread.

It’s natural to feel numb and shocked when you’ve been given a life-changing diagnosis. Some people experience anger and denial, and you might, too. You may isolate yourself from others and have no interest in activities that you once enjoyed. You may be worried about whether or not to have children as the condition is often inherited. Given all these factors, NF can cause an emotional burden to you and your partner or family.

Neurofibromatosis Statistics

The Neurofibromatosis (NF) Center of the Washington University School of Medicine provides these statistics on the disease:

  • Half of all people diagnosed with neurofibromatosis inherit it.
  • Neurofibromatosis is most commonly diagnosed in children and young adults.
  • NF1 occurs in one in every 3000 births and is one of the world’s most prolific genetic disorders.
  • NF2 occurs in around one in every 40,000 births.

Current Treatments Available for Neurofibromatosis and Their Side Effects

There’s currently no known cure for neurofibromatosis. Therefore, treatments are focused on controlling your symptoms. No standard treatment exists for the condition because NF symptoms vary so widely from individual to individual. Some symptoms, such as freckling and cafe au lait posts, don’t require treatment. When treatment is necessary, your options could include:

  • Radiation or chemotherapy if a tumor has become malignant
  • Surgery to remove problematic tumors or growths
  • Physical therapy
  • Support groups
  • Counseling
  • Surgery for bone problems
  • Cataract removal surgery
  • Aggressive pain-relieving treatment

Surgery and cancer treatments are crucial if you need them. Marijuana for neurofibromatosis can help relieve some of the side effects of treatment such as nausea, vomiting, and discomfort. If you’ve been prescribed strong painkillers, they can have adverse side effects too. Considering these side effects, it’s important to understand how cannabis can offer you natural and gentle relief from your NF symptoms.

How/Why Marijuana is an Effective Treatment for Neurofibromatosis

As a bona fide alternative treatment option, medical marijuana has been proven as a remedy for patients who seek pain relief time, anti-inflammatory effects and the treatment of Neurofibromatosis. It is already known that marijuana can stimulate the appetite of patients. But researchers have learned that cannabinoids, in addition to having palliative benefits in cancer therapy, have been associated with anti-carcinogenic effects, which are responsible for preventing or delaying the development of cancer or tumor spread. Additionally, medical marijuana has been responsible for slowing tumor growth rates and shrinking them in size.

 

What Symptoms of Neurofibromatosis Can Marijuana Treat?

Medical marijuana is legal in many states to alleviate the symptoms of qualified conditions and chronic diseases. Some of the NF symptoms pot can treat include:

  • Tumors. Marijuana is known to have anti-tumor properties. This suggests it may be useful for limiting the growth and development of NF-related tumors. One study found that two children with NF1 saw a regression in their tumors over a three-year period. Throughout this time, apart from inhaling cannabis, no other treatment was used. There are two major cannabinoids in pot: tetrahydrocannabinol (THC) and cannabidiol (CBD), which inhibits tumor cell growth, viability, spreading and invasion.
  • Pain, Mood and Sleep. Many people use cannabis for treating chronic pain and inflammation. It can also help you get a good night’s rest. Certain strains are even useful for elevating your mood.
  • Appetite Loss. Cannabis is well-known for giving users “the munchies.” Pot can help if you can’t eat well due to your treatment or to the disease itself.

If you’re suffering from neurofibromatosis, speaking to a medical marijuana doctor could help you take that first step towards better health. Neurofibromatosis is an approved qualifying condition for medical marijuana treatment in Illinois.

Best Strains of Marijuana to Use for Neurofibromatosis

There are many strains of pot on the market nowadays. Each strain has its own therapeutic profile and varying levels of CBD to THC. Because of this, the best strain for you will depend on your NF symptoms.

Tumors

Tumor growth is one of the standard signs of neurofibromatosis. You can use medical pot to help treat this. Some helpful strains are:

  • Jack Herer. This strain contains pinene, a substance that provides you with anti-tumor effects. Studies have shown that it can even prevent cancer cells from forming within your brain.
  • Pennywise. Pennywise is an indica strain that contains equal levels of CBD to THC. Both these substances have been discovered to have anti-cancer properties in animal and cell models. Pennywise produces a very mellow and relaxed vibe.

Pain and Inflammation

Chronic pain is arguably one of the most challenging aspects of NF to manage. Rather than taking prescription painkillers, many of which come with a risk of addiction and other adverse side effects, cannabis is a natural route to take. Some good strains for nerve pain are:

  • Jack Herer. Jack Herer can also be used for pain and inflammation. As a sativa strain that produces energizing and uplifting effects, the bud is filled with natural painkillers and helps to reduce stress and tissue inflammation.
  • Harlequin. Harlequin is a sativa-dominant hybrid and provides you with a painless and mellow high. The strain is useful for fighting inflammation and general pain.

 

Mood

Suffering from a consistently low mood can be difficult to deal with along with your diagnosis. Cannabis is a real alternative if you don’t want to take prescribed anti-depressants. Two particularly good strains for lifting your mood are:

  • Gorilla Glue #4. Gorilla Glue #4 is a very potent hybrid strain. It gives you a slow body high and feelings of euphoria. If you haven’t tried pot before, this strain may be a little intense. However, it can be extremely effective against depression.
  • Laughing Buddha.  Laughing Buddha is a sativa strain that makes you feel happy and sociable. It’s perfect for use during the day and is particularly suitable for use before social gatherings as it makes you feel talkative and relaxed.

Insomnia

Your body heals as you sleep. If you’re not getting adequate rest, you feel negative, irritable and unable to cope with the day ahead. Add this to the other symptoms you’re experiencing, and you could be feeling terrible. Thankfully, these two heavy indica strains of medical cannabis for neurofibromatosis are excellent for getting you off to sleep:

  • Northern Lights. Northern Lights is particularly helpful if your insomnia is due to pharmaceutical medications, pain, anxiety or depression. This strain is a hybrid that's dominant in indica. You’ll find you can to sleep within an hour or so of taking a hit.
  • Bubba Kush.  Bubba Kush is a commonly found 90% indica strain that relaxes you and takes away any pain you’re experiencing. It’s best to take before bed, as it can have some heavily soothing effects.

Appetite Loss, Nausea and Vomiting

You might find you’re suffering from appetite loss, nausea and vomiting if you’re undergoing cancer treatment relating to your NF. If so, the following strains can help:

  • God’s Gift. God’s gift has a strong indica lineage and is excellent for killing pain and for making you hungry. It’s also used to treat nausea and it gives you a happy and upbeat sensation.
  • Super Lemon Haze. Super Lemon Haze is a popular sativa strain. It helps ease vomiting, nausea and general gastrointestinal distress. The strain is also known for fighting chronic fatigue and depression.

You may have noticed that some of these strains are used to treat many different symptoms of NF. It's a good idea to speak to a knowledgeable budtender or medical marijuana doctor if you’re wondering which one may best suit you. If you feel that pot could help you and you want to know more about marijuana and fibromatosis, search for a medical marijuana doctor or dispensary today.

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This information is not provided by medical professionals and is intended only to complement, and not to replace or contradict, any health or medical advice or information provided by healthcare professionals. If you have any questions, please contact your doctor or other healthcare professional.

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