164d
0
24F 5'0 95 LBS What other options should I look for? I have gradual shoulder blade pain on my right side that follows my dorsal scapular nerve. It started almost 3 years ago now and it was tolerable until about 8 months ago, things went from about 3/10 on average to about 6/10 or 7/10 all the time, sometimes 8/10 or 9/10 depending on the day and what I do at work or during the day. I've never been in an accident or done anything to my shoulder that I woke up one day in severe pain, like I said it's been gradual. My left side will occasionally hurt due to overuse because I can't use my right side that much. It affects my everyday life at this point and I have lost multiple jobs. My doctors obviously do the basic test to see if I can still use my arm and I can do things but I can't perform a lot of daily and work life things but that doesn't seem to matter as they just keep sending me to physical therapy as that seems to be the fix all. The physical therapist have said that my arm is below average for strength on my middle trapezius being a ⅗ back 3 months ago when it was stronger and that it seems like nerve damage. This is the 3rd physical therapist that has said this. I have also had an osteopathic doctor, and a couple ortho ER doctors tell them this when I went in due to the unbearable pain. . I cant lift my arm above about the 90 degree point without pain and feeling like there's a block from my side.. from the front I can go pretty much all the way, my neck is usually super stiff and sore, there will be a shot from my neck area that feel electric down my arm to my fingers then they will get so tingly it hurts then they go numb, my shoulder blades stick out from my back. When I have my arm out at my side about the 90 degree angle and I try to rotate it back I feel and hear a bunch of crunching and it hurts. I have minimal grip strength to the point where I can barely open a bottle of pop or something similar. Whenever my s/o tries to give me a back massage somedays it hurts so much that just the weight of his hand is unbearable yet my doctors are kind of nonchalant about this whole thing. Does anyone have any idea what this could be? Could it be a pinched nerve or something similar but further down on my spine? Do I keep pushing my doctors or trying physical therapy despite it not really working? All my meds don't really help other than the migraine ones. I still get them occasionally but nearly as much. I don't drink or smoke. I do about 15 MG of THC edible about 4 times a week. I have no idea what to do anymore as it's getting worse. Meds I take: Ketorolac- 10MG Prochorperazine- 5MG Naproxen- 500MG Maxalt (as needed) 10MG Topamax 75mg Zanaflex 4mg (3×) Testing I've had done Cervical MRI: IMPRESSION: 1. No cervical spinal mass lesions or evidence of neurofibroma formation. The cervical spinal cord appears normal. No areas of pathologic enhancement are seen. 2. Very minor bilateral C2-3 facet sclerosis and minimal spurring with slight narrowing of the bilateral C3 foraminal. 3. No significant spondylosis. No disc protrusions or central canal stenosis. Brain MRI IMPRESSION: Brain MRI 1. Unremarkable MRI appearance of the internal auditory canals and associated structures. No acute pathology is seen. 2. Unremarkable MRI appearance of the bilateral mastoid air cells and remainder of the temporal bone structures. 3. Solitary ovoid area of signal change in the superior right frontal subcortical white matter measures up to 0.7 cm with some central cystic change and no associated enhancement or reactive edema appears indeterminate in nature. Short-term contrast-enhanced MR surveillance is recommended in 3-4 months. 4. Otherwise unremarkable contrast-enhanced MRI of the brain. Shoulder MRI IMPRESSION:1. Very mild tendinosis within the distal supraspinatus and infraspinatus tendon fibers without a focal tear. 2. No labral tear identified on non arthrogram imaging
526d
1
I am 47 years old and I'm wondering if my Neurofibromatosis is going to get worse as I get older? I already notice more pain and of course I constantly find new fibromas..can anyone tell me what is going on with you and how you handle the low self esteem.
542d
0
How does this condition effect your daily life?
562d
0
Does anyone else notice more bumps at you get older or big skin tags?
570d
3
Do any of you guys get consistent Migraines, headaches that seem to never go away? Have you found anything that works I've tried everything just about and my Neurologist I'd out of idea's.
624d
2
Hey I am Andrew , I have a brainstem tumor put it me on a walker. I also have neurofibromatosis it’s a genetic disorder
638d
6
im not sure if anyone even uses this app anymore, it seems to not have many users. but the concept makes me excited!! i am struggling very badly with my NF right now and itd be lovely to talk to other people about it and just relate n stuff? ive never met anyone else with NF before
The significance of online communities lies in the emotional support and understanding they provide, empowering patients to express their concerns, fears, and triumphs without fear of judgment. Such platforms foster a sense of belonging and camaraderie, helping patients navigate the complexities of their conditions and treatment options.
Bupropion
night sweats
paranoid
Valium
sertraline
palpitations
Anxiety (Including GAD)
Depression
palpitations
Depression
Valium
Bupropion
What is it?
Neurofibromatoses are a group of genetic disorders that cause tumors to form on nerve tissue.
Learn moreAlike Wisdom
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
206 Alikes with Neurofibromatosis (NF)
Learn from others
who are experiencing
Neurofibromatosis (NF).
4.7 Ratings