Since birth (1964) I have led a normal life with a diagnosis of spinal weakness in the form of spina bifida, more precisely meningomyelocele lumbalis th12. Until about 15 years ago. From about 2007 I started to experience great weakness and buckling in my knees, permanent muscle spasm, tingling in my fingers and leg muscles with associated numbness to touch and impaired walking. It is possible that the spasm is not related to spina bifida at all. At the time, a diagnosis of lyme disease was added to the mix, probably complicating things. The whole area from the waist down, knees, ankles, are very weakened. The feet are numb.
Since then I have been looking at different options of conventional and alternative therapies, rehabilitation, phytotherapy, eastern medicine, other modalities. Unfortunately, the classical medicine I turned to in the beginning is limited by the knowledge of the doctors I contacted. They were really the best of the neurologists and orthopedists in my area. I was given a referral that unfortunately did not address the effect and certainly not the cause. Surgery is not an option in my case. I am practicing various strengthening exercises to increase energy, not losing hope.
I am interested in the opinion of someone who has practical experience with this disease. How can I alleviate or eliminate muscle spasm, strengthen leg energy and increase sensitivity. Someone who has specifically dealt with this condition and been successful. I am trying to exercise physically and spiritually, this is a challenge to me to change. I am open to all alternative methods that I know work. I just have to find the right one.
thx for any reaction
Peter
Hello, Peter.
Spina bifida is a congenital condition, which means that it is present at birth. Meningomyelocele is a severe form of spina bifida, where the spinal cord and its surrounding tissues protrude through an opening in the spine. This can result in various neurological problems, such as muscle weakness, spasticity, and sensory deficits.
Muscle spasticity is a common symptom of spina bifida and can be challenging to manage. There are various conventional treatments available, such as medication, physical therapy, and surgery. However, you mentioned that surgery is not an option for you. Therefore, non-pharmacological interventions such as physical therapy, stretching, and strengthening exercises, may help alleviate muscle spasticity and improve mobility.
In addition to conventional therapies, alternative treatments such as acupuncture, massage, and herbal remedies may also be helpful in managing muscle spasticity. However, it's important to discuss any alternative therapies with your doctor before trying them, as they may interact with your current medications or worsen your symptoms.
Furthermore, managing sensory deficits, such as numbness and tingling, can also be challenging. Sensory re-education and graded sensory stimulation may be helpful in restoring sensation and improving function.
It's essential to have a comprehensive approach to manage the various symptoms of spina bifida, which may require the collaboration of various healthcare providers, such as neurologists, physiatrists, and physical therapists.
I wish you all the best in your journey to manage your symptoms and improve your quality of life.
thank you for your kind response, I consider it a kind of introduction to the topic.
My interest is in sharing experiences with other "owners" of this life trial. For example, how they deal with a similar situation, if they know alternative methods of improving the condition, etc. There are many different recommendations on the web, whether with phytotherapy, eastern medicine, antispasmodic tinctures, not all of which are suitable for everyone.
For me personally, this condition is a great benefit in terms of a non-physical approach, slowing down a lifestyle once quite stressful. Life values are always a matter of proportion to health and life priorities.
Discussion with doctors, as I mentioned, is really minimal perhaps, as their insight is tied to their practice and physical approach. The improvement of my condition is based on homeopathy, massage, physiotherapy, qigong exercises, meditation and also general support by changing my mindset.
I call this a holistic approach, interconnected.
This is where I am looking for feedback from other people who are willing to share.
I wish you good health
Peter
Hope others will share their experience.
It's great to hear that you have found a holistic approach that works for you in managing your condition. It's true that doctors may focus more on physical approaches and medication, but it's important to find what works best for you and your individual needs.
It sounds like you have a good balance of self-care practices that benefit both your physical and mental health. Keep up the good work!