Dealing With Anxiety before Diagnoses

New diagnosis and before diagnosis
1

Hi :wave: I’m in the states and somehow managed to stumble across the UK MS society instead of the US one (which I’m grateful for because o couldn’t find a forum on the US page). I’ve been suspecting of having MS for years my pcp dismissed my symptoms as being caused by my weight. Well 50 lbs down and I’ve got new symptoms :face_holding_back_tears::melting_face:

I don’t have a dx yet and have an appt with neuro in 6 months but it feels like that’s so far away and I’m terrified of the possible progression. I’m showing cognitive decline (not emergent like idk who I am) but enough that it’s affecting my daily life in a negative way.

Idk what to do, it feels like everyone is ignoring me and dismissing my symptoms cause they’re so “broad”.

Below is a list of the symptoms I showed the urgent care Dr who gave me a referral to neuro.

Idk what to do anymore, any and all encouraging/kind words or advice is appreciated. Much love :heart_hands::black_heart:

  • Tingling hands and arms every day if not all day
  • constantly tight shoulders like someone is grabbing & holding
  • pain in shoulder blades & upper back
  • Extreme pain in heel and ball of foot
  • Extreme fatigue that comes from no where
  • Loss of appetite
  • Weight loss
  • Nausea
  • Pain in back when looking down
  • Worsening vision
  • Tightness in left kidney area
  • Sharp headaches near eye
  • Extreme heat intolerance even when not hot
  • Irritability
  • Depression
  • Lots of forgetfulness big and small
  • Pain in arms when rested for extended periods of time
  • Dropping things
  • Stumbling
  • had spinal meningitis as a child
  • trouble controlling fart/poop
  • Trouble urinating & with bowel movements (going all the way & starting)
  • tightness in chest
  • Sharp electrical like pain right hip
  • Trigeminal neuralgia nerve headaches…
  • Sensitive sense of smell (some things smell stronger than they should in an overwhelming way)
  • Symptoms get worse when sitting down for long periods of time
  • glaucoma, eye pressure right eye only (same side as trigeminal neuralgia) pain with pressure comes in waves
  • Compression helps relieve pain
  • Autism like cognitive symptoms
  • uncoordinated swallowing
  • Trouble chewing (jaw fatigue & pain)
  • Spatial awareness (humping into walls all the time)
  • extreme fatigue after showering
  • excessive anxiety even though I take meds
  • Tension Headaches (miserable)
  • Tailbone nerve
  • Reduced sense of taste & smell
  • Uncoordinated typing (like my fingers forget where the letters are)
2

Hi

Take your list with you to the Neuro and also take someone with you as the appointment goes very quickly and two lots of ears are better than one, as it’s easy to forget things

Best of luck take care.

Pam x

3

Hi, as Pam says, take a list and a second pair of ears if you can. Keep a diary to note what happens, when and for how long. Its useful both for the neuro appointment and for yourself as it can highlight potential triggers that can be avoided/reduced once you know what they might be. I know there are certain things that I need to keep to a minimum/avoid to make sure I don’t exacerbate my symptoms.

If you haven’t already tried it, Mindfulness Meditation could help with calming some of the anxiety you are experiencing, and could also help to lessen the effect of some of your symptoms as you go through the process of testing and eventual diagnosis. The best thing with meditation is that it won’t cost you anything to try. I have been using meditation for years and it really has helped me cope with pretty much everything life has had to throw at me.

Also, has your PCP checked your vitamin B12 and D levels? Deficiencies in both these can cause some of the symptoms you are experiencing. My husband has just finished a course of B12 loading injections due to severe B12 deficiency and some of his symptoms, in particular painful arms when resting are similar to yours.

Your neuro appointment may feel like a lifetime away right now, but take it one day at a time, be kind to yourself, eat as healthily as possible (well done on the 50lb weight reduction), don’t beat yourself up over forgetfulness, use a walking stick! Yes, definitely use a walking stick if you aren’t already, it will help with balance/stumbling/bumping into walls etc. It may feel weird to start with but I know once I started using one things improved greatly. Make sure the walking stick is the right length for your height, you should be standing upright with the arm slightly bent (the handle should be around/just above hip height) and have the stick on the opposite side from your most affected side - for me, my left side is affected so I hold the stick with my right hand; left foot and stick forward together - keeps me from face planting:)

Hang in there, and I hope you get a diagnosis and treatment quickly.