Hi All lovely MS people,
Thanks for letting me join, and i hope that you dont mind me spilling my problems out here!
I also hope that some people searching for answers, like me too, might get help relating to some of my frustrations, and know you're not alone!!
Cant believe its been a year in March since the tingles started. Ive had 2 MRI's (one brain, one cervical neck both with lesions) and a neck CT scan. Ive been to numerous GP's, 2 optometrists, a physio, an osteo, chinese medicine, the hospital, regular psychologist, massage therapists and 1 neuro already in October, and new neuro who specialises in MS on the 15th March.
What a credit card bill. I wish i had arranged health insurance earlier.
given up a couple of times. Many times left doctors/hospital/specialists offices feeling frustrated, in tears, offended, crazy, and deflated. So dramatic!..But I know you know, that's how it feels.
Started with the tingles left Jaw, neck, ear and arm. Motled vision and feeling a little dizzy. No headache! Then over next 6 months light tingles shoulders, chest, breasts, back of thighs. Lips numb. Original GP said "stress" or "muscular" or "migraine". After a couple of months i begged him for a neuro appointment - "Nah, i dont think you need to see a neuro, but if you REALLY want me to, then i can give you a referral". 2nd GP opinion - Migraine;3rd GP opinion - overweight;4th GP - Stuck with him for last 4 months, and he believes, and always has, that its MS. He referred me for the Brain MRI which came back with multiple (15) 1-2mm lesions in the white matter of both frontal lobes. Atypical for demyelination. (YAY!!), but... cannot be excluded considering clinical presentation.
In Oct 12, had a horrid neuro experience. He said the lesions look like MS, but are not in "right place for MS". I thought it was all over, and very happy with that answer!!
Then he seriously said "Google doctor high cholesterol, and sleep apnea, see you in 6 months for a check up MRI"!! During the appointment he also said "do you have a boyfriend, and do you sleep in the same bed together?" trying to get at do i snore. Im sure he could have phrased that differently. He also said "what do you mean, 'Weird and Wonderful'?" when i was talking about pin pricking. He just picked me apart and was so blunt with no tact, when i had so much hope in him providing an answer. I was so mad, frustrated and felt crazy, i cried. Alot.
I thought it was all over, until January when my physio sent me for a cervical MRI incase of a pinched nerve. Came back with spinal cord lesions.
Symptoms started in March 12. Next "episode" of intense symptoms October12 then recently Feb 13.
*Waves of tingles over scalp up back of neck, over to forehead and down sides of face.
*Pin pricks like a bug biting me, or stabbing of a pin, mainly in upper body of chest, arms, shoulders and head (and finger tips).
*Feet & lips regularly numb.
*Recurrent short bursts of chest pain (went to emergency, ECG- chest wall muscle spasms)
*Dizzy, nausea, head spins, while desk, standing, feel drunk
*Motled vision again, pressure behind right eye. Pressure on Scalp like bruising.
*Left eye lid twitched for a straight MONTH! ARGH!
*Just stopped talking midsentence. Frustrating
*Think one thing, then frustratingly do another
*Tongue completely numb for about half hour
*Very sore neck and shoulders, leg and joint in both left hand and right foot
*VERY tired. So tired i could go back to sleep all day, and sleep all night again with no trouble.
*Now i shake. ALL the time. Feel like im shaking from the inside out. Hands physically shake.
*Muscles twitch all over the place
*Tingles predominantly up and down left leg up to belly button and back down again
*The last week i have Dizzy, nauseous, light headed like i might faint (doc says "its from whats going on with you." (BP excellent)
*Tired and unmotivated. Fatigue.
*Depression takes hold some weeks
*Eyes blurry and mottled and takes concentration to focus.
All blood tests have been done. No answers.
Im being realisitic now. Im not getting my hopes up, or putting ALL my faith into this next appointment. I have some though. Im at the point where im facing this fact, that its very likely MS. My GP said i have all the symptoms, but the tests just have to prove it. I just want to know. If its not MS, what the hell is it, and if it is, just tell me so i can move on, not be in limbo and manage it, and stop being so scared, and being hyper-aware of my body and whats happening to me!! And tell my boss, so she stops thinking im a faker!