Aa
Not certain what to do.
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.
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.
Let your PC know that you would prefer a second opinion to ease your mind. It's your insurance and you should see the doctor you would like to see. I used to be afraid to "make waves", but I now find that I can nicely state what I want and most of the time there is no issue.
Chris
Chris
Thanks to all who have commented, I really appreciate your thoughts.
Just returned from appt. with PC. I suggested perhaps we ought to look at the overall picture of my symptoms, instead of addressing and dismissing one at a time. Mind you I did approach him with respect to his position as 'doctor'. Many tests have already been done to rule out other concerns. I came away with feeling extremely depressed and defeated.
He ordered bloodwork, I'm fine with more bloodwork, he also suggested I take a baby aspirin daily in case something vascular is going on with regards to my cognitive function problems. He also said I should go back to my neuro, as the MRI which I had 2 months ago show "some white spots but radiologists are very conservative and report everything they see and as we age everything begins to change". ugh.
Before my appt. today, I found an MS neurologist nearby who I wrote to with a list of symptoms asking if he thought it may be appropriate for me to see him. His response was simple, if your MRI shows anything call and make an appt. but we need a referral. My PC said I have a long history with my current neuro and I should go back to him. (The very reason why I desired to get a fresh take from a MS neuro)
Throwing in how I know my own body and based on how I feel I know something is wrong, I would like early intervention to get things under control plus I live alone, no family, no kids, a widow living in a two story rural house -- if I have MS I need to move, if not I still need to get to the bottom of my problems so I can stay in my much loved home. My pleas did not move him to change his position. Changing PCs again is probably not an option.They are few and far between, many are no longer excepting new patients in my area. It took me over a year to find this one who came highly recommended by friends.
I apologize for going on and on. Venting is good. I've just got to find the energy to keep fighting.
Just returned from appt. with PC. I suggested perhaps we ought to look at the overall picture of my symptoms, instead of addressing and dismissing one at a time. Mind you I did approach him with respect to his position as 'doctor'. Many tests have already been done to rule out other concerns. I came away with feeling extremely depressed and defeated.
He ordered bloodwork, I'm fine with more bloodwork, he also suggested I take a baby aspirin daily in case something vascular is going on with regards to my cognitive function problems. He also said I should go back to my neuro, as the MRI which I had 2 months ago show "some white spots but radiologists are very conservative and report everything they see and as we age everything begins to change". ugh.
Before my appt. today, I found an MS neurologist nearby who I wrote to with a list of symptoms asking if he thought it may be appropriate for me to see him. His response was simple, if your MRI shows anything call and make an appt. but we need a referral. My PC said I have a long history with my current neuro and I should go back to him. (The very reason why I desired to get a fresh take from a MS neuro)
Throwing in how I know my own body and based on how I feel I know something is wrong, I would like early intervention to get things under control plus I live alone, no family, no kids, a widow living in a two story rural house -- if I have MS I need to move, if not I still need to get to the bottom of my problems so I can stay in my much loved home. My pleas did not move him to change his position. Changing PCs again is probably not an option.They are few and far between, many are no longer excepting new patients in my area. It took me over a year to find this one who came highly recommended by friends.
I apologize for going on and on. Venting is good. I've just got to find the energy to keep fighting.
hi and welcome. I hope you get some answers. Unfortunately I was not able to read you post because of it being one continous string of text. Next time if you break it apart into smallre chunks I'll give it a go. best, Lulu
I think a test for Celiac disease wouldn't be out of line. I think you said you have thyroid disease? So if you are on thyroid replacement, then they need to try a higher dose to see if it resolves at least the temperature issues. You can't go by the numbers alone - it is also symptoms.
It definitely sounds like you need to get the right group of doctors... I know that sounds like such a simple thing... find doctors who care.... I still refer to my first neuro as Dr Weenie.
Unless you have issues with insurance, don't hesitate to change doctors. And schedule a consultation, literally go interview the doctors! I am very thankful that I now have a great team of doctors, all are open minded and willing to listen and try something new or slightly different (reflexology, yoga, LDN...).
I believe you do need to find a neuro that specializes in MS, even if its not a neuro you would want to stay with, but finding a neuro with the right MS experience can help with the diagnosis process at least.
I am sorry you are dealing with all this... many of us ride the rollercoaster nightmare of diagnosis of might be this, might be that... they even started me on IV rocephin when the first neuro swore it was CNS lyme regardless of what the symptoms indicated.... Just keep pushing thru and don't hesitate to question the doctors, when you just don't you're getting answers to all your questions or the doctors are considering everything you are telling them, don't except half the answer or just play musical doctors til you find one that you feel is truly looking for your best interest!! Those doctors are out there, not super easy to find, but they do exist!!
Good luck and keep coming back and sharing... sometimes just venting makes a world of difference! And know you're not on your own, so many of us have been there, many others here are right there with you at this very moment!!
Jen
I'm so sorry you are going through all this. My son fell down the stairs when he was a little guy and landed on a hardwood floor. He had a seizure right after so I do believe that's possible.
It's really hard to know what to do when you have a group of doctors that aren't working together. Many of your symtoms sound like they could be MS, but there are a lot of things that mimic MS as well. Have you seen a neurologist that specializes in MS? Many of us are either in limboland or have been there before. You might try posting there (limboland) to see if anyone there has other ideas.
If you aren't comfortable with your new pc, you might try visiting another one. Limit your list of symptoms to the most important ones. You might start with just the new ones. Explain that you had issues with a fall before and had surgery, but these NEW symptoms are the ones that are really concerning you. MS is normally diagnosed by process of elimination.
I wish you the best of luck!
Chris
It's really hard to know what to do when you have a group of doctors that aren't working together. Many of your symtoms sound like they could be MS, but there are a lot of things that mimic MS as well. Have you seen a neurologist that specializes in MS? Many of us are either in limboland or have been there before. You might try posting there (limboland) to see if anyone there has other ideas.
If you aren't comfortable with your new pc, you might try visiting another one. Limit your list of symptoms to the most important ones. You might start with just the new ones. Explain that you had issues with a fall before and had surgery, but these NEW symptoms are the ones that are really concerning you. MS is normally diagnosed by process of elimination.
I wish you the best of luck!
Chris
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