Hi and welcome. That is sure one lengthy list of symptoms and I am glad to hear the neurologist is looking at options for you. You may be older now and outside that window of "optimal" MS age (I was 54 when diagnosed) but it appears you have had neurological problems for years.
You may have to see a psychiatrist just to clear that question off the table. It happens quite a bit when it drags out like this.
Listen to your instinct - you know you have something wrong and don't give u on getting answers.
see you around, Lulu
Personally, after my experience, I would be finding a new neuro. I would also be making a shorter list of ONLY neurological symptoms. Keep it short and sweet. I wouldn't go back to my teen years.
Age? Hell many of us were 60 or older before we were dxed. We either had tools for doctors or didn't bother seeking medical help until our late 50's or 60's. My first neuro told me I had a pinched nerve and was POSITIVE it could cause all the problems.
Like Lulu said....listen to YOU. You know there is something wrong and it isn't just a little bit of anything. Keep in mind while you are sitting under your present neuro, it is your body that is being damaged. It ain't something they can fix. MS takes what she is gonna without some serious help.
Find another neuro.
Welcome - no worries where the length is concerned - it really helps us to know more about what you've been through.
You history should be concerning - especially where the PE's are concerned. If you find you get no-where with the neuro, I would ask he/she for a referral for someone that can look into possible causes. There are many mimics of MS - those including disorders of the blood and clotting factors. These should be thoroughly investigated in order to truly rule them out. A hematologist could do this as well.
Thanks for joining us,
I would also suggest a new Neurologist and be referred to a Neuroimmunologist or Rheumatologist.
You definitely have quite a history and to have no answers at this point since the age of 16, concerns me. It's time to become proactive in your health care and move onward, upward and switch Neuros. Obviously after all this time you need to.
(Dont worry about lengthy posts -- I do it all the time). Heh.
Welcome to the forums where you will find the best people around. I love these guys and wouldnt go anywhere else.
Thanks everyone for your all the help. I know there is a lot here and I kind of felt embarrassed by listing my whole life of symptoms. I just didn't know what was connected to possible MS or if it even sounds like I should be thinking in this direction.
It has been too long without answers for sure!!
These last 2 years have been getting worse as far as my right leg weakness, the constant electrical buzzing, and the fatigue. With another summer coming, I dread the heat.
This may be a silly question, but from all of my life history, what seems related to MS? Wjat kind of blood disorders are like MS?
I appreciate all your expertise and time helping newbies like me :D
My thoughts regarding bloods were related to APS, or Hughes Syndrome, which is a big MS mimic. This came to mind while reading your symptoms - especially the blood clots.
Not suggesting this is what you have, but it came to my mind. You can read more on it here: http://www.hughes-syndrome.org/symptoms.htm
Here is what I would present. Keeping it simple, trust if you have a good neuro he/she will ask questions but will have a good idea of what is happening and will know what to ask before giving you a good exam. I think making the list short gives him a better opportunity to give the exam. Sometimes if the list is too long, I feel they write it off as anxiety before beginning.
It might even be shortened a bit more by attaching a copy of the MRI and letting him view it on his own.
I am not a medical professional ...just another MSer and this is just my own personal opinion. I hope it is helpful:
Over the last few years have experienced-
-Double vision .
-Constant burning pain on soles of feet.
-Choking on water or saliva.
-Twitching in eyes, inside arm, and left index finger.
-Flutter sound in ears.
-Memory problems especially when fatigued.
-Drop things or have a hard holding things
-Numbness, curling in toes on right foot
-Severe episodes of internal itching in lower parts of legs and arms brought on by heat or exercise
-Foot cramps and calf cramp right leg,
-Neck and hand cramping.
--Swelling in feet, ankles and hands..
-Severe sweating even from small chores like doing dishes
-Don't sleep well.
-3 UTIs in 4 months
Had MRI last month-
TECHNIQUE: Sagittal T1. Axial T2. Axial and sagittal Flair.
2 small focal T2 hyperintensities involving the left frontal
sub-cortical white matter. However, this is a quite nonspecific
finding in a patient of this age although they could represent
demyelinating plaques.No classical evidence of demyelinating disease.
Thank you for taking time to help me know what to present. I had no idea some of the things on the list were possible MS related symptoms. I probably would have left off things like acid reflux. I still can't figure out how some of these can be related to MS so your help is much appreciated. I have Kaiser insurance so getting another doctor is difficult as they only have a few neurologists in my area. I don't think any of them specialize in MS either. Maybe the EMG next month will show something and we can get to the bottom of this.
BTW- I am beginning to think that people with MS are much more aware of things than the doctors!!
The acid reflux can be caused by the famous MS hug...an awful feeling...
I have a really tight, pressure feeling feeling especially on my right side just under the ribs and it extends around to the back. It is so bad I can hardly wear a bra or pants. I didn't know what it was from. Is this like an MS hug?
For me it seems the MS hug does the same thing. I called the acid reflux into it because I also have problems swallowing. When I can it just seems to sit and it takes forever for it to move down. MS just seems to slow my entire system. I think it does need to be brought to the neuro's attention...I would add the tight feeling in your side extending to your back on that list.
Just be sure those things on the list are things that are interfering in your daily life. If they are only on occasion I would take them off for now.
I sure wish you luck having been in your shoes for nine years before a dx.
Thank you Sumana for explaining that. I would have never made the connection.
I am sorry that you were in limbo for so long.
When I had my first situation when I was in my 20s, I was so scared and got so frustrated trying to find out why my entire right side went weak, I couldn't write, concentrate, was in a wheelchair and that is when the memory problems started. I gave up then trying to find answers because within a month, all the symptoms were virtually gone (except for memory, heat, fatigue and balance issues but I just thought I was weird).
I guess in some ways I am grateful that I didn't know all these years, since there was nothing to be done anyway. It has only been in these last two years that things seem to be accelerating. And that is when it was suggested that it may be MS. So my limbo for MS has been much shorter.
As I read all the posts here, I realize this is a common issue. I am so sorry for everyone to have to live with the uncertainty. Not knowing seems like torture. Not that finding out you have MS is a cause for celebration, but at least you feel validated in what you are experiencing and there is hope for help to feel better with the new treatments they have (I think).
I hope things are good for you today :D