Hi All,
I am finding myself stuck between doctors and symptoms. It sounds as if most here have been in or are in the same boat. I have read a timeline of symptoms appearing and disappearing is helpful for a doctor to review. A timeline for me is difficult because of memory. I have made a list of symptoms and given those to my endo (I have hypothyroidism), neuro, and pc. My pc is new to me and is attacking the list of 25 symptoms one at a time, the endo seems only attuned to her portion and likewise for the neuro. Now to back track and you'll see the conundrum I find myself. 17 months ago I had cervical spinal surgery which came about as a result of a fall down the stairs. I don't remember how I fell, but do remember - oh this is gonna hurt. I procrastinated seeing a neuro because of no insurance and thinking I'd get better. I did have classic signs of a spine injury; numbness in arms/hands - weakness in arms - pin and needles mainly in arms but a little in my toes on the left side. Finally I relented and sought help. I explained to my neuro that I had fallen, had seizures after the fall and yes, it was a mistake to wait for treatment, but here I am. He assumed I had a seizure at the top of the stairs as I could not have possibly hit my head hard enough to cause seizures despite it being a concrete floor. ( I fell 12 steps ) I was then slapped with the tag epileptic and sent for surgery - where I was given narcotics for pain and voila more seizures. Flash forward to the present and my situation today. Despite the time that has passed since surgery I haven't gotten symptom free, I understand I may never heal completely and that the surgery was in fact to make certain no further damage happens. BUT, I am now having many new symptoms which include heat/humidity intolerance, extreme fatigue, muscle weakness in legs that come and goes, muscle stiffness esp. in biceps but now to the point where my arms are rigid if only for a few seconds, extremely high blood pressure which spiked suddenly and wasn't treated until I approached an ambulance when not feeling well shopping (my endo passed it off and didn't treat - despite it being 190s+/130+) but did order a thyroid ultrasound, my neuro did put me on meds but did nothing more to explain it's sudden rise, I get words mixed up and don't know how to spell them, or can't think of the word I want (I am a writer and was able to write a novel after my fall and surgery), my balance is horrible - I have fallen or wobble around at times enough to walk with a cane on trails, there are others but the most troubling to me is a recent bout with nystagmus. My neuro said he couldn't pass that off on my neck surgery or fall and ordered an MRI. I got a call from the front office saying it was fine no follow-up scheduled. Had my first appt. with new pc and he mentioned white marks on MRI but the neuro must have had a better look (?), mentioned to him I have had some pain in the front of my neck and trouble swallowing and that I had told my endo this - she did a thyroid ultrasound and subsequent blood work up which showed the parathyroid was okay and thyroid from the ultrasound was ok. My pc has sent me to an ent who just did a barium swallow test and neck ct with contrast. I have not gotten those results back yet. As the ent was going over my records he asked if I had any problems swallowing in the past and I had completely forgotten I had about 7 years ago. I had a work up then and it was found to be nothing. Nothing except my husband had to do the hymlic (?) on me twice, it hurt to swallow and food kept going down wrong. Anyhow the timeline you guys speak of keeps rolling around in my brain - now the swallowing cannot be passed off from injury either. I started thinking about my eyes, and yes I have had problems with them across the years too, starting about 7 years ago. It began as optical migraines, which over time have gotten worse to the point of blindspots - these migraines are over a span of many years and I have a few over a week or two and then they disappear. I did seek help from my neuro for those and also my eye doctor, both passed optical migraines off as something I don't need to worry about. Now I have the nystagmus which has subsided , yet 4 days ago I experienced a very bad pain behind the eye while in the grocery store. It lasted a few minutes. I also have had leg jerks, one leg at a time over a period of about three weeks and a few in my arms, then they disappeared. My neuro says that may happen with nerves from my surgery waken up...I don't buy it. When I touch my thighs lightly it feels weird, and then I have a slight spasm, that lasted for a few days and has since remitted. I have lost my husband and mom over the past five years and have no family, except for chosen family (friends) - I am alone in a rural area and just want answers to go on....I don't want a diagnosis of MS, but I fear that is what is going on. I do want some diagnosis and not just pass everything off as stress/injury/in my mind!!! Knowing what is going on will help me not only prepare (probably move closer to a town), but be on some kind of treatment. I'd really like input. Thanks so much.