Persistent Neuromuscular & Autonomic Symptoms

Other conditions
1

I am 34 years old, female and I have been experiencing multi-system issues, some of them ongoing for most of my life (will try my best to indicate which ones are life-long). I currently do not have a GP. I went to urgent care and have had blood work done (all normal) Chest X-Ray (Normal) and an abdominal ultrasound (normal, except for contracted gallbladder despite fasting, which I have been referred to a gastroenterologist).

Relevant to add? I am a twin, I have no idea about my medical history as I am adopted (hence not sure about my birth mother’s prenatal care (if any, as at the time of my birth my country was a second world country, she was also of partial Romani descent so may not have received adequate care because of this?)

Childhood head injury: I was sliding down an ice hill and fell onto the side of my head (hard enough to rattle my teeth), I remember being extremely dazed afterward but never went to the doctor (this happened at school and by the time I got home I was feeling okay)

What I’m seeking here is a list of POSSIBLE conditions/diagnoses that fit these criteria, keeping in mind that a lot of these are life-long (my adoptive mother rarely bought me to the dr, so it is possible things were missed especially with mild presentation)

  • Generalized stiffness/tightness (back, arms, legs, hands, feet) (sometimes it feels like certain areas literally tighten up and squeeze)

  • Patchy hypertonic areas found on physiotherapy exam (not full-muscle hypertonia)

  • Muscle weakness and fatigue during repetitive or sustained tasks

  • Legs feel heavy and stiff (left leg is more of an issue, it will sometimes give out when I walk, when I used to run long distances in gym class it would eventually kick outwards, maybe due to fatigue, I’m not really sure.)

  • Lifelong difficulty with fine motor skills (dexterity, precision tasks)

  • Lifelong difficulty coordinating compound or multi-step motor movements

  • Occasional near-falls or swaying sensation

  • Breathlessness during activity; exhaling sometimes feels harder than inhaling

  • Lifelong difficulty sitting cross-legged

  • Lifelong difficulty touching toes

  • Lifelong greater outward hip rotation (able to sit in W position more easily than typical sitting positions)

  • Heat sensitivity (as well as to light, sound and touch)

  • Lifelong excessive sweating (including with laughter)

  • Lifelong strong startle reflex

  • Occasional sense of internal swaying

  • Fatigue that is disproportionate to physical exertion

  • Pinching/pulling/tugging sensations primarily in my legs but they happen in my arms too

  • Often feel like I’m in flight or fight mode

  • Memory problems (lifelong, but I feel as if they have gotten worse, which also makes it hard for me to remember when a lot of these symptoms began)

  • Lifelong bloating and fluctuating bowel habits (constipation ↔ frequent stools)

I’ve found that foam rolling and stretching (recommended by physio) has somewhat reduced the stiffness and that my fine motor skills improve slightly after stretching sessions, but the improvements are temporary.

2

What I can recommend you to do is is a SAR request for your medical records.

If you feel your Neurological care has not been up to standard for the many symptoms presenting, they are suggestive of a neurological condition. Which one it is pointing towards I do not want to say, which would be wrong to do.

Go to your GP and ask for a neurological referral and while waiting for this go through your medical records as many issues are missed by GP’s and those in Neurology whom you rely on to do the work for you. This is one thing I found to massive detriment to my long undiagnosed condition. I suffered for 8 years of hell thinking I was going mad, until my brain had a massive internal wiring issue to put it mildly. This has been a long hard road to treatment and care.

If your in position of having private MRI done I recommend doing so of brain and spine in T1 and T2 scans with a contrast dye if possible? This will help speed up your report sent direct to your GP again.

Many GP’s are not wanting to involve themselves in neurological care issues and many do especially new GP’s are keen to find out what is wrong with their patients.

Really wish you the best of luck and if you need any more help or info please message again. Many patients are misdiagnosed by poor care in all sectors. It’s really hit and miss in some areas with others absolutely brilliant Dr’s and consultants.

Unfortunately I hope you understand I cannot give specific information but I have a suspicion what might be wrong. It’s one of two things again I don’t have medical experience but I’ve experience in knowing what was wrong with myself before any Dr!

Always trust your own instinct, I wish I had done so years earlier, where life could have been different for me personally. Don’t let medical people bully or intimidate you ever, always ask for a second opinion it can make a difference to future outlook of treatment..

Really wish you the best in a very difficult time for you. Always remember when feeling down always reach out to a friend, as there is always someone willing to listen to you. If you need help with specific requests please do reach out.

Firstly download your local TRUSTS SAR forms, or phone for them to be sent to you directly. This process can take from 3-6 months to get depending on amount of information on storage. Also request from GP practice to build your case for neurologists as time is limited their end. Xx