Aa
still looking for some kind of answer
hello to all !! I have been dealing with alot of neurlolgical problems for quite some time ,but as we all know, drs. seem to blame everything on stress.
I am a 38yr old female. and was dx with graves disease 7 yrs ago. I had radioactive iodine in 2005 and now have thyroid eye disease. I have had three eye surgeries, orbital decompression, eye muscle and eyelid retraction.
dx with ischemic optic neuropathy in 2007 and double vision.
TIA
simple partial seizures ( 4 EEG's abnormal)
nystagmus
bulge disc in c5 c6 with impingement
symptoms I have had:
slurred speech 3 seperate times each lasting from one week to two weeks
lightheaded for 8 months,
the ground seemed to be sinking when walking,
poor memory and couldnt think of the right words to say.
noise intolerance,, i couldnt even stand the sound of a phone ringing.
horrible pain in my left arm, neck and shoulder area,,(disc bulge for no apparent reason)
hyperreflexia
both legs were unable to move on their own, i had to physically move them with my hands to roll over in bed,
buzzing feeling in my left foot, that comes and goes.
twitching left thumb for 3 months,
pain in my right wrist to the point it was stiff and i couldnt move it for more than a week,
stiff neck for over a month, came on from stress.
stabbing random pains on and off allover body, while walking at a store for less than 10 mins. i suddenly couldnt walk due to excruciating pain in my upper right thigh, it lasted for 15 mins, then it stopped! weird and embarrassing, one minute i am walking fine next minute cant walk too good.,
hand tremors,
fatigue,
numb hands,
depression
NEURO # 1 mri came back normal and he does not believe it is ms. DX : TIA
NEURO#2 DX: simple partial seizures
NEURO# 3 Told me that I have anxiety, and I need to stop drinking coffee!!! I LEFT CRYING!!
i have many symptoms .. i feel like i can go on and on, but oh my god, enough is enough, and still i have nooooooo answers. i guess i am just looking for someone to understand what i have been going through and not be told it is coffee or stress or i am a hypochondriac... i cant stand that!!!!!!
thanks for taking the time to read this, i am hoping to get some answers, i guess when the next attack occurs..
GOD BLESS TO ALL OF YOU !!! YOU ARE ALL AMAZING AND THANK YOU
I am a 38yr old female. and was dx with graves disease 7 yrs ago. I had radioactive iodine in 2005 and now have thyroid eye disease. I have had three eye surgeries, orbital decompression, eye muscle and eyelid retraction.
dx with ischemic optic neuropathy in 2007 and double vision.
TIA
simple partial seizures ( 4 EEG's abnormal)
nystagmus
bulge disc in c5 c6 with impingement
symptoms I have had:
slurred speech 3 seperate times each lasting from one week to two weeks
lightheaded for 8 months,
the ground seemed to be sinking when walking,
poor memory and couldnt think of the right words to say.
noise intolerance,, i couldnt even stand the sound of a phone ringing.
horrible pain in my left arm, neck and shoulder area,,(disc bulge for no apparent reason)
hyperreflexia
both legs were unable to move on their own, i had to physically move them with my hands to roll over in bed,
buzzing feeling in my left foot, that comes and goes.
twitching left thumb for 3 months,
pain in my right wrist to the point it was stiff and i couldnt move it for more than a week,
stiff neck for over a month, came on from stress.
stabbing random pains on and off allover body, while walking at a store for less than 10 mins. i suddenly couldnt walk due to excruciating pain in my upper right thigh, it lasted for 15 mins, then it stopped! weird and embarrassing, one minute i am walking fine next minute cant walk too good.,
hand tremors,
fatigue,
numb hands,
depression
NEURO # 1 mri came back normal and he does not believe it is ms. DX : TIA
NEURO#2 DX: simple partial seizures
NEURO# 3 Told me that I have anxiety, and I need to stop drinking coffee!!! I LEFT CRYING!!
i have many symptoms .. i feel like i can go on and on, but oh my god, enough is enough, and still i have nooooooo answers. i guess i am just looking for someone to understand what i have been going through and not be told it is coffee or stress or i am a hypochondriac... i cant stand that!!!!!!
thanks for taking the time to read this, i am hoping to get some answers, i guess when the next attack occurs..
GOD BLESS TO ALL OF YOU !!! YOU ARE ALL AMAZING AND THANK YOU
Hi Quix, thank you so much!! I came to medhelp because I sought you out, I knew you would listen and respond to me. You are amazing!! :)
I was ranting over my three neuros that have not been much help to me, and I am in and out of the office within 15 minutes. I wish there were more Doctors like you that take that extra time to listen.
I wish I had my reports of the MRI and EEG's, I did request them but my neuro did not give them to me, I was told they would mail them but that was like 6 months ago.
As far as the optic neuropathy... My opthalmologist informed me that it will never get better. It may get worse but not better. Now, this is my question.... Right after I had my second surgery on my eyes for the muscles, two months later my right eye ( the one with the optic nerve damage) got really bad,.. Very blurry, I could not see very good.
My bad eye was noticeable to me even using both eyes. Six months later, it resolved. I still had the damage to the optic nerve, however, the blurriness was not as bad.
Now, my bulging disc.... It came on out of nowhere. It slowly got worse as the weeks progressed. It happened four months after my second surgery and two months before my third surgery. I went right to my GP and she immediatly sent me for x rays and MRI. This went on for a month.
One week after the tests, i got the phone call from the my GP and she explained that I had a tear in the tendon, Impingement on the nerve and disc bulge on the c5 c6.
One week after the phone call, I had an appt. with the orthopedic surgeon. She did not say it was from anything and that surgery was not needed since I was beginnning to heal on my own. I have not had to see her again. I do still get pain, but I rest as soon as I feel it starting.
During this month, and since the beginning of spring of 08 thru Feb 09 I was very lightheaded. I would turn my head and feel wobbly, I would squat and stand up and feel lightheaded, even laughing or any thing that required forced air out, made me lightheaded. Walking and feeling like the ground was sinking in on me happened for about a week, It was very strange. I looked like a drunk LOL
My Graves disease diagnosis was in 2003, I began showing symptoms during my first trimester of my pregnancy and was diagnosed following blood tests. My fatigue during the beginning of this diagnosis was extreme especially because of my pregnancy and I was not under control yet.. Just over this past year, I have to nap everyday. At two oclock, i am sooooo tired and I just crash.
My slurred speech actually goes back to before graves but it was only one day of my "lazy tongue" (Thats what I called it) this happened twice within a five year span, Year was around 1994 and then again around 98'
I had it again after I had RAI for my thyroid treatment which lasted for a week and a half. year was 2005. I was getting married four months later.
In the year 2000, ??..... I was lying in bed watching tv . i was just getting ready to turn the tv off and roll over to go to sleep, and I couldnt. I could feel my legs, but could not for the life of me move them on my own. I looked at my legs and they just didnt move, I had to lift my legs up with my hands to move them. it was gone the next day. That has not happened again, but I have had weakness in the past and sharp toothache like pains in my right leg. My left side in the arch of my foot, I have had twitching and vibratng buzzing feeling.
I had also had twitching in my left thumb for three months over the summer.
I will be reading the above link and I will provide you with better information.
Once again thank you for your time, I am very grateful and appreciative to you.
God Bless and I hope you are doing well.
Pamela
I was ranting over my three neuros that have not been much help to me, and I am in and out of the office within 15 minutes. I wish there were more Doctors like you that take that extra time to listen.
I wish I had my reports of the MRI and EEG's, I did request them but my neuro did not give them to me, I was told they would mail them but that was like 6 months ago.
As far as the optic neuropathy... My opthalmologist informed me that it will never get better. It may get worse but not better. Now, this is my question.... Right after I had my second surgery on my eyes for the muscles, two months later my right eye ( the one with the optic nerve damage) got really bad,.. Very blurry, I could not see very good.
My bad eye was noticeable to me even using both eyes. Six months later, it resolved. I still had the damage to the optic nerve, however, the blurriness was not as bad.
Now, my bulging disc.... It came on out of nowhere. It slowly got worse as the weeks progressed. It happened four months after my second surgery and two months before my third surgery. I went right to my GP and she immediatly sent me for x rays and MRI. This went on for a month.
One week after the tests, i got the phone call from the my GP and she explained that I had a tear in the tendon, Impingement on the nerve and disc bulge on the c5 c6.
One week after the phone call, I had an appt. with the orthopedic surgeon. She did not say it was from anything and that surgery was not needed since I was beginnning to heal on my own. I have not had to see her again. I do still get pain, but I rest as soon as I feel it starting.
During this month, and since the beginning of spring of 08 thru Feb 09 I was very lightheaded. I would turn my head and feel wobbly, I would squat and stand up and feel lightheaded, even laughing or any thing that required forced air out, made me lightheaded. Walking and feeling like the ground was sinking in on me happened for about a week, It was very strange. I looked like a drunk LOL
My Graves disease diagnosis was in 2003, I began showing symptoms during my first trimester of my pregnancy and was diagnosed following blood tests. My fatigue during the beginning of this diagnosis was extreme especially because of my pregnancy and I was not under control yet.. Just over this past year, I have to nap everyday. At two oclock, i am sooooo tired and I just crash.
My slurred speech actually goes back to before graves but it was only one day of my "lazy tongue" (Thats what I called it) this happened twice within a five year span, Year was around 1994 and then again around 98'
I had it again after I had RAI for my thyroid treatment which lasted for a week and a half. year was 2005. I was getting married four months later.
In the year 2000, ??..... I was lying in bed watching tv . i was just getting ready to turn the tv off and roll over to go to sleep, and I couldnt. I could feel my legs, but could not for the life of me move them on my own. I looked at my legs and they just didnt move, I had to lift my legs up with my hands to move them. it was gone the next day. That has not happened again, but I have had weakness in the past and sharp toothache like pains in my right leg. My left side in the arch of my foot, I have had twitching and vibratng buzzing feeling.
I had also had twitching in my left thumb for three months over the summer.
I will be reading the above link and I will provide you with better information.
Once again thank you for your time, I am very grateful and appreciative to you.
God Bless and I hope you are doing well.
Pamela
I know you've been on the forum for several days now and I have been one of the doctors that don't help. Sorry. I got way behind in thorough answers that I had promised to people. And never worry that I will be offended when someone rants against a doctor they have seen, but clearly who had NOT seen them. I only jump in when the rant involves ALL doctors. This is because there are really great doctors out there. We just have to keep looking and we have seen our members find them one by one. If the supply of good neuros was nonexistent, there would be no point in ranting at all.
Everybody deserves a doctor that LISTENS to them, LOOKS at them, attempts to find the answers, and then THINKS about the evidence and information they have before them. Any doctor that interrupts everything you say and then suggests stress (BTW coffee does NOT equal stress! Jitters, maybe) needs to be put into your rear-view mirror - fast. They show from the beginning that they only care about themselves and will not think about things with an open mind.
Stress is never a good explanation for major neuro symptoms and is the product of a mediocre and lazy medical mind.
I thought I read all of your posts, but I don't see the results of an MRI nor the EEG.
You have two things that the doctors maybe be confused by in evaluating your symptoms.
Your are right that the post-Graves eye disease might be making everyone ignore symptoms. Not only did you have pressure on the optic nerve, but also on the extraocular muscles. And then you had the decompression surgieries. So the optic neuropathy and the double vision can easily be attributed to that.
The second problem is the bulging disc with impingement (pressure) on the spinal cord. This can cause a condition known as Cervical Spondylotic Myelopathy. In real words that means pressure on the cervical cord that damages the spinal cord. This can cause the pain, numbness in your arm and hyperreflexia in any limb.
However, neither of these conditions should cause the vertigo with altered sense of gravity and motion and with nystagmus.
I must confess that I don't know whether Graves can cause the fatigue and heat intolerance, plus the cognitive changes AFTER the disease itself has been erradicated. Do these symptoms date bate to when the Graves was active?
The two prolonged episodes of speech slurring do not sound like a simple partial seizure. It would not be a complex seizure to my reading, due to the fact that you are conscious and not confused. Simple, partial seizures rarely last more than (???) 2 minutes, if I remember correctly. If you were in status epilepticus due to partial seizures you should have a mammothly abnormal EEG - I would think. It's not my area of expertise.
TIAs do not last for 2 weeks.
So, I am not seeing any good diagnosis that has been offered for the vertigo, slurred speech, nor the cognitive deficits. The fatigue and heat intolerance are certainly seen with Graves, and "may" persist after treatment. The eye stuff (minus the nystagmus which is not due to problems with the optic nerve) can be attributed to the Thyroid Eye Disease. Hyperthyroidism can and does cause neurologic impairment. That also makes this whole thing tricky.
Doctors are generally loathe to assign more than two diagnoses to a person, but the reality is that the occasional unlucky person can have more than two serious things wrong with them. You do need someone who can maintain an open mind.
Are they treating the bulging disc with PT or have you been referred to a neurosurgeon? Impingement is a very serious condition if it is impingeing on the cord itself and not just on the spinal fluid sac. I would think that treatment of that would be the first thing you need. Is anyone trying to coordinate all of this?
Well, one thing that might make all this a little easier to understand is the writing of a timeline. There is a recent post by Slightlybroken about timelines. A good one will allow us and a doctor to view all of the symptoms, diagnoses, test results and such in chronological order. Sometimes something as simple as this will make a diagnostic possibility (like MS or something else) stand out.
Here is the article I wrote for describing a timeline and if you read SB's thread you will likely get more ideas.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36
If you'll answer the questions, maybe I will have a few more ideas.
Quix
Everybody deserves a doctor that LISTENS to them, LOOKS at them, attempts to find the answers, and then THINKS about the evidence and information they have before them. Any doctor that interrupts everything you say and then suggests stress (BTW coffee does NOT equal stress! Jitters, maybe) needs to be put into your rear-view mirror - fast. They show from the beginning that they only care about themselves and will not think about things with an open mind.
Stress is never a good explanation for major neuro symptoms and is the product of a mediocre and lazy medical mind.
I thought I read all of your posts, but I don't see the results of an MRI nor the EEG.
You have two things that the doctors maybe be confused by in evaluating your symptoms.
Your are right that the post-Graves eye disease might be making everyone ignore symptoms. Not only did you have pressure on the optic nerve, but also on the extraocular muscles. And then you had the decompression surgieries. So the optic neuropathy and the double vision can easily be attributed to that.
The second problem is the bulging disc with impingement (pressure) on the spinal cord. This can cause a condition known as Cervical Spondylotic Myelopathy. In real words that means pressure on the cervical cord that damages the spinal cord. This can cause the pain, numbness in your arm and hyperreflexia in any limb.
However, neither of these conditions should cause the vertigo with altered sense of gravity and motion and with nystagmus.
I must confess that I don't know whether Graves can cause the fatigue and heat intolerance, plus the cognitive changes AFTER the disease itself has been erradicated. Do these symptoms date bate to when the Graves was active?
The two prolonged episodes of speech slurring do not sound like a simple partial seizure. It would not be a complex seizure to my reading, due to the fact that you are conscious and not confused. Simple, partial seizures rarely last more than (???) 2 minutes, if I remember correctly. If you were in status epilepticus due to partial seizures you should have a mammothly abnormal EEG - I would think. It's not my area of expertise.
TIAs do not last for 2 weeks.
So, I am not seeing any good diagnosis that has been offered for the vertigo, slurred speech, nor the cognitive deficits. The fatigue and heat intolerance are certainly seen with Graves, and "may" persist after treatment. The eye stuff (minus the nystagmus which is not due to problems with the optic nerve) can be attributed to the Thyroid Eye Disease. Hyperthyroidism can and does cause neurologic impairment. That also makes this whole thing tricky.
Doctors are generally loathe to assign more than two diagnoses to a person, but the reality is that the occasional unlucky person can have more than two serious things wrong with them. You do need someone who can maintain an open mind.
Are they treating the bulging disc with PT or have you been referred to a neurosurgeon? Impingement is a very serious condition if it is impingeing on the cord itself and not just on the spinal fluid sac. I would think that treatment of that would be the first thing you need. Is anyone trying to coordinate all of this?
Well, one thing that might make all this a little easier to understand is the writing of a timeline. There is a recent post by Slightlybroken about timelines. A good one will allow us and a doctor to view all of the symptoms, diagnoses, test results and such in chronological order. Sometimes something as simple as this will make a diagnostic possibility (like MS or something else) stand out.
Here is the article I wrote for describing a timeline and if you read SB's thread you will likely get more ideas.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36
If you'll answer the questions, maybe I will have a few more ideas.
Quix
Thanks Erin, I might suggest it to my GP again. I have nothing else to lose, I am not working anymore and on disability. I am awaiting my 4th eye surgery. I was supposed to have it on Sept. 14th but my eye surgeon called to inform me that I have some sinus issues to deal with first or the orbital implants will not do a damn bit of good.
So.. once again i wait.....
My GP is wonderful, she knows how hard its been for me to deal with all of this eye disease stuff and to have neurological issues on top of it,, she trys so hard to get me the best care, and gets just as frustrated as me when I tell her how I am treated.
I know she would help me get set up at the Cleveland Clinic,.
Any info you have on it would be greatly appreciated.
Who was the Doctor that you saw?
If you are not able to disclose that info, I understand. Just wondering if i could have my GP request that particular doc.
thanks again, Pam
So.. once again i wait.....
My GP is wonderful, she knows how hard its been for me to deal with all of this eye disease stuff and to have neurological issues on top of it,, she trys so hard to get me the best care, and gets just as frustrated as me when I tell her how I am treated.
I know she would help me get set up at the Cleveland Clinic,.
Any info you have on it would be greatly appreciated.
Who was the Doctor that you saw?
If you are not able to disclose that info, I understand. Just wondering if i could have my GP request that particular doc.
thanks again, Pam
Pastor Dan - you always make me smile - you are brighter than all of the neuro's and light bulbs in my eyes!
See the forum for a poll special for you :)
Hugs,
Erin :)
Pam,
It's not too late to go to the Cleveland Clinic. They have some wonderful doctors. Who knows maybe you can get an intelligent answer about your skin and see a neuro while you are there who can pick and choose which pieces in your health puzzle fit and which are that nasty red herring that throws them off the right track.
If you have a regular doctor that will refer you that would be good but not necessary. You can actually request a visit yourself. If the next opening is months away they have a waiting list you can be on.
Just a thought if you are up for the trip - I can give you more scoop if you are interested
Hugs,
Erin :)
It's not too late to go to the Cleveland Clinic. They have some wonderful doctors. Who knows maybe you can get an intelligent answer about your skin and see a neuro while you are there who can pick and choose which pieces in your health puzzle fit and which are that nasty red herring that throws them off the right track.
If you have a regular doctor that will refer you that would be good but not necessary. You can actually request a visit yourself. If the next opening is months away they have a waiting list you can be on.
Just a thought if you are up for the trip - I can give you more scoop if you are interested
Hugs,
Erin :)
Erin, if you do that poll on how many neuros it takes to get a dx, don't forget to include "I don't know; I'm still undx" as one of the possible answers.
Hey, how many neuros does it take to change a light bulb?
Hey, how many neuros does it take to change a light bulb?
YIKES , 10 neuros!! My vitamin D dose is 50,000units, 1x week . Not sure what my level was,, I am in the sun alot, especially in the summertime.
My skin on my left hand has had a cut in the knuckle with itchiness for 3 years, it all started when I was losing my job due to my eye disease, and that's around the same time the slurred speech began. Any time I was nervous, upset, or anxious, I itched,, it was horrible!! I finally went to urgent care and was prescribed prednisone .. it healed the leathery skin look and open cuts, but I still itch when nervous and sometimes reopen the cuts and the cycle begins again.My GP wanted to send me to the Cleveland Clinic, but I heard the wait is very long. I shouldve waited to get in because I might have already had an intelligent answer.
My skin on my left hand has had a cut in the knuckle with itchiness for 3 years, it all started when I was losing my job due to my eye disease, and that's around the same time the slurred speech began. Any time I was nervous, upset, or anxious, I itched,, it was horrible!! I finally went to urgent care and was prescribed prednisone .. it healed the leathery skin look and open cuts, but I still itch when nervous and sometimes reopen the cuts and the cycle begins again.My GP wanted to send me to the Cleveland Clinic, but I heard the wait is very long. I shouldve waited to get in because I might have already had an intelligent answer.
wow, you have been through alot!!!! Its not fair how people are treated by these drs. PLEASE NO OFFENSE TO ANY DOCTORS ON HERE, But whats it gonna take before we are heard with our complaints, I basically sit back and wait. I try not to let every little thing bother me nor do I think its something serious, but WE KNOW when something is not NORMAL. GOOD LUCK TO YOU!
I've seen many doctors including two neuros, one of which was at a well know MS clinic in Canada.
I had a tonne of symptoms, including hyperflexia and clonus in one leg, as well as some other abnormal reflexes (ie unable to hold leg up against pressure), vision pboblems, vertigo, heart palpitations, weakness, etc. etc.
I ended up getting very sick, and was still told my issue was perhaps stress or migraines because the MRI was clear.
I collapsed at work, went to ER, a week later diagnosed with acute blood cancer and admitted to Hospital for urgent bone marrow biopsy and stabilization (steroids, chemo).
Not saying you have cancer, but just saying you know your body and keep pushing for answers.
I now see a top medical oncologist for Multiple Myeloma in Canada. She told me I had the cancer for at least two years, probably longer (the whole time I kept complaining of neuro symptoms). The neruo I was seeing at the ms clinic was so sure to brush me off as "not MS" but he failed to looked past MS. I was diagnosed in ER with basic blood tests (CBC, etc) but the doctor still didn't tell me until I went to my referal the next week the team of doctors (Like the tv show HOUSE) new exactly what it was before I got there.
I had a tonne of symptoms, including hyperflexia and clonus in one leg, as well as some other abnormal reflexes (ie unable to hold leg up against pressure), vision pboblems, vertigo, heart palpitations, weakness, etc. etc.
I ended up getting very sick, and was still told my issue was perhaps stress or migraines because the MRI was clear.
I collapsed at work, went to ER, a week later diagnosed with acute blood cancer and admitted to Hospital for urgent bone marrow biopsy and stabilization (steroids, chemo).
Not saying you have cancer, but just saying you know your body and keep pushing for answers.
I now see a top medical oncologist for Multiple Myeloma in Canada. She told me I had the cancer for at least two years, probably longer (the whole time I kept complaining of neuro symptoms). The neruo I was seeing at the ms clinic was so sure to brush me off as "not MS" but he failed to looked past MS. I was diagnosed in ER with basic blood tests (CBC, etc) but the doctor still didn't tell me until I went to my referal the next week the team of doctors (Like the tv show HOUSE) new exactly what it was before I got there.
Pam,
Here are my answers :)
I have seen 10 neuros!!! The 9th one finally dx me and the 10th is an MS speicalist at The Cleveland Clinc that my #9 neuro sent me to because I am considered complex, lol. Now I see #9 & #10 both and they consult with each other and they are both great! I hope that I never have to decide because they are different personalities but both brilliant so I want to keep them both!
I am severely Vitamin D difficient which I found out as part of my dx. Now my docs keep tabs on it. I take 2,000 units per day from the vitamin store and once or twice a year it drops anyway so the docs put me on an rx version of 25,000 once a week plus my vitamin.
I have itchy skin all the time. Maybe stress plays a factor, idk? I can't wear certain fabrics, no tags in my clothes, no flower like shampoos, gentle soap and laundry. Those are all known triggers but the cause, who knows. I even itch when my own hair falls out and lands on my skin.
I also have polymorphic light eruption - fancy pants name for I get blisters from the sun everytime I'm in it sun block or not. How funny that I need my vitamin D but the Sun is the only natural source and it gives me blisters!
I guess you have 6 more neuro's to visit and either have them dismiss you or you dismiss them so that you can catch up to me, ha ha.
Hugs,
Erin :)
Here are my answers :)
I have seen 10 neuros!!! The 9th one finally dx me and the 10th is an MS speicalist at The Cleveland Clinc that my #9 neuro sent me to because I am considered complex, lol. Now I see #9 & #10 both and they consult with each other and they are both great! I hope that I never have to decide because they are different personalities but both brilliant so I want to keep them both!
I am severely Vitamin D difficient which I found out as part of my dx. Now my docs keep tabs on it. I take 2,000 units per day from the vitamin store and once or twice a year it drops anyway so the docs put me on an rx version of 25,000 once a week plus my vitamin.
I have itchy skin all the time. Maybe stress plays a factor, idk? I can't wear certain fabrics, no tags in my clothes, no flower like shampoos, gentle soap and laundry. Those are all known triggers but the cause, who knows. I even itch when my own hair falls out and lands on my skin.
I also have polymorphic light eruption - fancy pants name for I get blisters from the sun everytime I'm in it sun block or not. How funny that I need my vitamin D but the Sun is the only natural source and it gives me blisters!
I guess you have 6 more neuro's to visit and either have them dismiss you or you dismiss them so that you can catch up to me, ha ha.
Hugs,
Erin :)
Yes Deb,, first neuro definatley jumped to conclusions,, Second neuro, the one that dx seizure is the one I still see now.
The third one was very arrogant, I left his office crying and told my General Practitioner that I dont care if I am dragging on the floor, I will never go see another neuro again.. I was very angry .... lol But I guess you can say, I have given up on seeking a drs. proffessional opinion of I am stressed ,, to come here and talk to the people that KNOW WHAT I AM TRYING TO SAY!!!!!
So whats up with the crazy reflexes,, I could be talking to someone with my hands and if I accidentally hit my knee, It goes way up, its funny and embarrassing at the same time, I have kicked people by accident many times.
The drs. look concerned but dont tell me much, they just write in their little folder.
What are some of the symptoms you experience?
talk you you soon, Pamela
The third one was very arrogant, I left his office crying and told my General Practitioner that I dont care if I am dragging on the floor, I will never go see another neuro again.. I was very angry .... lol But I guess you can say, I have given up on seeking a drs. proffessional opinion of I am stressed ,, to come here and talk to the people that KNOW WHAT I AM TRYING TO SAY!!!!!
So whats up with the crazy reflexes,, I could be talking to someone with my hands and if I accidentally hit my knee, It goes way up, its funny and embarrassing at the same time, I have kicked people by accident many times.
The drs. look concerned but dont tell me much, they just write in their little folder.
What are some of the symptoms you experience?
talk you you soon, Pamela
thanks for the welcome.. I actually have been to a rheumatologist, I have been tested for lupus, b12, rheumatoid arthritis. The last nuero I went to was from Basset Healthcare in Cooperstown, (apparently an ms specialist) I actually thought finally someone that will listen to me.
INSTEAD.. he kept cutting me off, and raising his hand up to stop me from talking. Then he said my hand tremors are from drinking so much coffee!!! OMG What!!?? Then he said to destress,,,, sad to say, these kind of drs. are the ones that stress me out.
He made me feel and look like I was a hypochondriac with a lot of stress.. My celexa helps with my stress,, I am actually a happy person, when I am not dealing with these drs. that look at you like your crazy.
I was never looking for a health problem,, in fact, I wish I could go back in time and start over, because my life was very upbeat and fulfilling.. I just know something else besides my graves disease is going on with me.
I need to do a poll
How many doctors does it take for a diagnosis?
How many people here are Vit. D deficient ( I am)
How many people here have problems with itchy skin when nervous that lasts up to 3 years?
God Bless You Erin, by the way, enough about my issues LOL
How are you Feeling? What are some of your symptoms you have had, and what led to your dx. Have a Great day!
INSTEAD.. he kept cutting me off, and raising his hand up to stop me from talking. Then he said my hand tremors are from drinking so much coffee!!! OMG What!!?? Then he said to destress,,,, sad to say, these kind of drs. are the ones that stress me out.
He made me feel and look like I was a hypochondriac with a lot of stress.. My celexa helps with my stress,, I am actually a happy person, when I am not dealing with these drs. that look at you like your crazy.
I was never looking for a health problem,, in fact, I wish I could go back in time and start over, because my life was very upbeat and fulfilling.. I just know something else besides my graves disease is going on with me.
I need to do a poll
How many doctors does it take for a diagnosis?
How many people here are Vit. D deficient ( I am)
How many people here have problems with itchy skin when nervous that lasts up to 3 years?
God Bless You Erin, by the way, enough about my issues LOL
How are you Feeling? What are some of your symptoms you have had, and what led to your dx. Have a Great day!
Yes. I always get a knee tap with a hammer when I get my examination and my leg jerks out really far.
I assume that your doctor tests your thyroid replacement levels to see if they're in range. What other blood tests have you had to rule out other problems? You should have had numerous blood tests by now. Hopefully this was done.
Your 3rd neuro sounds lazy and incompetent. Your 2nd neuro didn't look at the whole you and all your symptoms. Your 1st neuro probably jumped to conclusions to quickly without consideration of your long list symptoms (more than likely lazy as well). It's time for the big guns-- an MS specialist.
I assume that your doctor tests your thyroid replacement levels to see if they're in range. What other blood tests have you had to rule out other problems? You should have had numerous blood tests by now. Hopefully this was done.
Your 3rd neuro sounds lazy and incompetent. Your 2nd neuro didn't look at the whole you and all your symptoms. Your 1st neuro probably jumped to conclusions to quickly without consideration of your long list symptoms (more than likely lazy as well). It's time for the big guns-- an MS specialist.
I started to have double vision around 2006
My thyroid eye disease was getting worse, I started radiation therapy for two weeks.
Sometimes I wonder if my eye disease is masking the neurological condition?
Here's something to think about :
I have double vision
I have ischemic optic neuropathy
I am extremely photosensitive
I have nystagmus
Optic neuropathy and optic neuritis obviously affect the optic nerve. At one time , my vision got really bad but then 6 months later it got alittle better. I asked my ophthalmologist if nystagmus could be caused by my eye disease, he said no.
Do you have hyper reflexes in your knees, ? I do
My thyroid eye disease was getting worse, I started radiation therapy for two weeks.
Sometimes I wonder if my eye disease is masking the neurological condition?
Here's something to think about :
I have double vision
I have ischemic optic neuropathy
I am extremely photosensitive
I have nystagmus
Optic neuropathy and optic neuritis obviously affect the optic nerve. At one time , my vision got really bad but then 6 months later it got alittle better. I asked my ophthalmologist if nystagmus could be caused by my eye disease, he said no.
Do you have hyper reflexes in your knees, ? I do
Welcome - I'm glad that after 2 years you finally joined us!
You have had so many symptoms over the years that you are not an easy case to solve. That is actually not uncommon but sadly a lot of neuro's want to have clear cut cases. When you have such a complex puzzle as yourself (me to by the way), ego can kick in when they can't come up with an answer. That's usally when stress, depression and even psychiatric issues start getting mentioned.
If they can't figure it out it's you not them, lol!
I notice that you have had 3 neuro's so far. Believe it or not that's probably average so don't think you have been to bunches. Maybe we should do a poll on how many neuro's we all visited before getting a dx :)
My advice would be to see a rheumatologist if you haven't already. They are the "type" of doctor that commonly dx difficult cases. They are used to it and are not quick to quit on you or think that it is in your head. If they do end up with a neurological dx then they will refer you to a neuro that they have a relationship with and things go much better.
Hang in there
Hugs,
Erin :)
Yes, I've had trouble with slurred speech at one time. I don't have this problem anymore, but a funny, weird thing happens when my tongue is cold (which doesn't take much anymore). After sucking on ice or eating ice cream, my tongue goes numb and I cannot talk without sounding like I'm mentally challenged. LOL
I do have a severe problem with word recall and cognitive issues. It may be a deciding factor as to whether or not I retire early on disability or not . . . but we'll see. I'm hanging in there!
When did you start developing double vision?
I do have a severe problem with word recall and cognitive issues. It may be a deciding factor as to whether or not I retire early on disability or not . . . but we'll see. I'm hanging in there!
When did you start developing double vision?
Pwms is people with ms. Lol I saw it written that way once on a forum. I guess I just assumed that was the shorthand version . :) sorry didn't mean to confuse anyone.
As far as the TIA... I had to see a cardiologist, I had a full work up and he says my heart is good.
Have you ever had your speech slur?
I felt like a drunk many days and nights between the slurring and staggering , tipping over from being lightheaded and having double vision. I was kinda comical
I had and sometimes still have a problem with word searching.... Couldn't think of what that thing was you cook on oh wait...a stove!! Lol
As far as the TIA... I had to see a cardiologist, I had a full work up and he says my heart is good.
Have you ever had your speech slur?
I felt like a drunk many days and nights between the slurring and staggering , tipping over from being lightheaded and having double vision. I was kinda comical
I had and sometimes still have a problem with word searching.... Couldn't think of what that thing was you cook on oh wait...a stove!! Lol
I know it must be obivious and I will be embarrased when you tell me, but what is pmws?
BTW, I can related to your frustration! I also can relate to your symptoms down to the telephone ringing sound.
One time years ago I ended up in the emergency room because of severe vertigo. No evidence of this on any kind of testing. I was sent home with that it could have been a TIA. I didn't have any orders other than to start taking a baby asprin. Did you have evidence of a TIA show up on a test?
BTW, I can related to your frustration! I also can relate to your symptoms down to the telephone ringing sound.
One time years ago I ended up in the emergency room because of severe vertigo. No evidence of this on any kind of testing. I was sent home with that it could have been a TIA. I didn't have any orders other than to start taking a baby asprin. Did you have evidence of a TIA show up on a test?
Thanks so much for the quick response. I thought about getting on this forum for 2 years now and I am glad I finally did it.
I am being treated for the seizure disorder but not the TIA, only because this second neuro does not believe it was a TIA that was causing me to have slurred speech to last for two weeks.
I am very aware of seizures and how many different kinds their are, however: I never heard of a seizure to last for two weeks without it being a medical emergency, Have You?
At this time, I am seeing up to 13 different specialists for all of my health issues. The funny thing is, I have 5 of these doctors suggest it may be ms and I should see an MS specialist, but when I have gone to a neurologist, they say something else or send me for more blood work. I have had every test under the sun.
Another question I have is , What else can cause hyperreflexia and nystagmus?? Any research I have done it is always suggestive of MS.. BELIEVE ME, At this point in my life, and all of the testing, I am not scared of that ,, I am just ready for an answer,, My symptoms I have or had come and go, and right now I feel ok, in fact somewhat better than I have in the past 3 years.
Take Care and I am happy to be here, Thanks for the well wishes, Pamela
I am being treated for the seizure disorder but not the TIA, only because this second neuro does not believe it was a TIA that was causing me to have slurred speech to last for two weeks.
I am very aware of seizures and how many different kinds their are, however: I never heard of a seizure to last for two weeks without it being a medical emergency, Have You?
At this time, I am seeing up to 13 different specialists for all of my health issues. The funny thing is, I have 5 of these doctors suggest it may be ms and I should see an MS specialist, but when I have gone to a neurologist, they say something else or send me for more blood work. I have had every test under the sun.
Another question I have is , What else can cause hyperreflexia and nystagmus?? Any research I have done it is always suggestive of MS.. BELIEVE ME, At this point in my life, and all of the testing, I am not scared of that ,, I am just ready for an answer,, My symptoms I have or had come and go, and right now I feel ok, in fact somewhat better than I have in the past 3 years.
Take Care and I am happy to be here, Thanks for the well wishes, Pamela
Hi DDH, You've come to a good place to vent those frustrations. There are a number of people here - especially women - who are in limboland with their own variations of symptoms that the doctors can't see and/or don't understand.
I'm so sorry you are among that group. You are unfortunately not the first person here to be told that the problems are from anxiety or stress, but I think this is the first I've heard "coffee" as an excuse that the doctors are stumped.
Your symptoms sure are a mixed bag and most of them could be neurological - but I'm no doctor. It would be so much simpler if you had one opinion from these three neuros as to what might be your problem. Are you being treated for any of these?
TIA's should not be ignored. Partial seizures should be monitored and treated if appropriate. And the coffee habit can be kicked by taking away your Starbucks frequent sipper card. LOL
Others here have gone through many more neuros before they have gotten a dx and on the road to treatment - and it wasn't always MS.
Feel free to stick with us and ask all the question you want. I hope you find the information and company here useful.
be well, Lulu
I'm so sorry you are among that group. You are unfortunately not the first person here to be told that the problems are from anxiety or stress, but I think this is the first I've heard "coffee" as an excuse that the doctors are stumped.
Your symptoms sure are a mixed bag and most of them could be neurological - but I'm no doctor. It would be so much simpler if you had one opinion from these three neuros as to what might be your problem. Are you being treated for any of these?
TIA's should not be ignored. Partial seizures should be monitored and treated if appropriate. And the coffee habit can be kicked by taking away your Starbucks frequent sipper card. LOL
Others here have gone through many more neuros before they have gotten a dx and on the road to treatment - and it wasn't always MS.
Feel free to stick with us and ask all the question you want. I hope you find the information and company here useful.
be well, Lulu
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