Hello all,
I've been experiencing a wide spread of symptoms over the last year, so much so that trying to explain everything to dr's makes me feel like I'm crazy. Looking for some insight, and support from people who are going thru it. I've seen so many different specialists over the last year, and I've gotten no where with any of them. I've went to my Neurologist with all this and they can only sit there and scratch their heads as to what is going on. I have Hyperthyroid disease, and recently diagnosed with PCOS which is another hormonal imbalance. My neurologist has tried blaming these symptoms on several things with no positive answer of what's going on.
With all the specialists I've seen, I have had multiple tests ran, all with good results. From blood work to eye testing and exams to my neurologist running an EEG as well as an MRI. All have came back normal. My question is as far as the MRI, since that was normal, showing no lesions, if I'm still experiencing unexplainable symptoms, what is the next step for diagnosing MS?
I have shrugged all my symptoms off as possibly from the hormone imbalances, but this week I start experiencing some weird feeling in my left leg, and also my left arm. I'm going to be giving my Neurologist a call tomorrow, and getting back in, I just wanted to ask you all what I should ask for, or speak to them about next. Thanks for taking the time to read this, kind words are appreciated.
New here, undiagnosed and confused.
Re: New here, undiagnosed and confused.
Was the neurologist you saw or the one you are seeing now MS specialists? Whether you have MS or not is obviously unclear at this moment. Plan for the worst just in case - start on a MS diet of your choice, start an exercise plan that fits your current physical conditioning, remove all stresses from you life, get plenty of sleep and avoid getting hot. Also get your vitamin levels checked. A couple of key ones are D3 and B12. Do you currently take supplements?
You obviously have something and all these steps are likely to help you regardless of your diagnosis.
You obviously have something and all these steps are likely to help you regardless of your diagnosis.
Re: New here, undiagnosed and confused.
No he is isn't. I don't believe we have one in this little area. As I did more research last night everything I'm experiencing seems to fit in with the beginning of MS. I take a daily multivit, but that has been it so far. I exercise with lifting, and running on a treadmill even tho lately I haven't due to this episode. Eating wise I cut back sugars, greasy foods, and white enriched foods. I stick with whole grain for everything and avoid starchy foods. I try not to eat processed anything. Like for dinner my husband will have instant mashed potatoes (yuck) and I will have a baked sweet potato.
They did check my b12 which what they said was normal range, even tho now reading on here apparently what drs consider normal is not. Funny part is that everything I have experienced thus far I have always called "episodes" because that is what they have been. I also suffer from migraines which I have since I was 18, I'm now 28. They have seem to have progressively gotten worse this last year, harder to treat too. I have hyperthyroid and pcos as stated before, I have IBS due to a nasty gut infection that I get really easy. (Can't take antibiotics without precautionary measure to prevent infection from coming back), and I have a yeast overgrowth problem.
A little over a year ago started out with chest pains, (that was nothing) a weird quick dizzy sensation that was on one side of my head. Light tingling in little spots of my body like one or both of the outside of my pinkies, it would switch thru-out the day, and go back and forth, I could get the feeling else where as well, like a different spot on my body. Like I said it comes and goes. Aches all over that come and go, some dull and achy, some could be sharp. I get them on my head as well. Sometimes an itching sensation on my skin that will last for a couple days then another symptom would start. Then it could all subside.
A different episode could be feeling hungry, lightheaded like I haven't eaten, like the feeling when your sugar drops (even tho it was normal range), vision gets blurry in one or both eyes or flips thru-out the day, on and off, can last about 10 minutes then goes back to normal. I'm always tired, some days worse than others of course. I am a bigger girl, but so far I have lost 20 lbs (just saying lol) Sometimes I can feel like a drip of cold water touches my skin, it's not a lot, maybe like a little drip a couple times a day, then that will stop.
The biggest one that stays for months even tho other symptoms will subside is quick bright flashes of light in my eyes, they can be white, or dark. I see stuff in my vision like an aura, that is quick and usually leaves in a second or two. Happens all day long. Just little spots, not in my whole vision. No eye pain yet. They seem to get worse around my menses and ovulation cycle. Actually a lot of these symptoms occur around these times. Like my hormones are kick starting this before or after menstruation or ovulation, sometimes that's how I tell when I am about to ovulate (sorry for the details) but maybe it's just a coincidence. I haven't looked much into MS and hormones to know if this is possible.
Other symptoms can be mood swings, get emotional very easy, vivid dreams, hard to concentrate of stuff, or sometimes I can't get the word out of what I am thinking about, feeling out of it. Sometimes I experience like a shock in my head, like when something startles you. That isn't all the time, comes with some episodes, other times I don't have it. Like so far I have had one with this episode that has lasted over a week now. I can move my neck without problem of shocking sensation, and heat doesn't seem to make it worse. I love hot showers, and so far it doesn't get worse than what I am experiencing. Some episodes I can feel thirst all the time, a weird sensation in my throat. All these symptoms don't always come together or with specific episodes, it's just random. Except for the bright flashes of light, they are always there, and get worse with the episodes.
Like I said previously I was chalking all this up to some kind of hormonal imbalance since all tests have been normal thus far. Then with this last episode came the funny sensation in my left leg, and a day later started in my left arm. I'm not any weaker, and I can walk fine, but I am aware of my limbs. Sometimes they feel heavy, sometimes they ache in spots. It can change thru-out the day and be only in my leg, and move up to my arm, or be only in my arm, then both. Seems like it can switch to different areas of the limb as well thru-out the day. I also got a new sensation in spots that come and go. Almost like a light buzzing in spots of my feet and legs.
I was telling myself perhaps it's fibromyalgia, or Chronic Fatigue Syndrome, but this last episode has me wondering now. I believe my Neuro only did a brain MRI, should I ask for a 3t mri of my spine, and brain, or the CFS? So far my insurance has been good as far as coverage.
Sorry for the long reply, hoping it's not too confusing to read or make me sound nuts. From what I've been reading on here, a lot of people feel crazy with there symptoms.
They did check my b12 which what they said was normal range, even tho now reading on here apparently what drs consider normal is not. Funny part is that everything I have experienced thus far I have always called "episodes" because that is what they have been. I also suffer from migraines which I have since I was 18, I'm now 28. They have seem to have progressively gotten worse this last year, harder to treat too. I have hyperthyroid and pcos as stated before, I have IBS due to a nasty gut infection that I get really easy. (Can't take antibiotics without precautionary measure to prevent infection from coming back), and I have a yeast overgrowth problem.
A little over a year ago started out with chest pains, (that was nothing) a weird quick dizzy sensation that was on one side of my head. Light tingling in little spots of my body like one or both of the outside of my pinkies, it would switch thru-out the day, and go back and forth, I could get the feeling else where as well, like a different spot on my body. Like I said it comes and goes. Aches all over that come and go, some dull and achy, some could be sharp. I get them on my head as well. Sometimes an itching sensation on my skin that will last for a couple days then another symptom would start. Then it could all subside.
A different episode could be feeling hungry, lightheaded like I haven't eaten, like the feeling when your sugar drops (even tho it was normal range), vision gets blurry in one or both eyes or flips thru-out the day, on and off, can last about 10 minutes then goes back to normal. I'm always tired, some days worse than others of course. I am a bigger girl, but so far I have lost 20 lbs (just saying lol) Sometimes I can feel like a drip of cold water touches my skin, it's not a lot, maybe like a little drip a couple times a day, then that will stop.
The biggest one that stays for months even tho other symptoms will subside is quick bright flashes of light in my eyes, they can be white, or dark. I see stuff in my vision like an aura, that is quick and usually leaves in a second or two. Happens all day long. Just little spots, not in my whole vision. No eye pain yet. They seem to get worse around my menses and ovulation cycle. Actually a lot of these symptoms occur around these times. Like my hormones are kick starting this before or after menstruation or ovulation, sometimes that's how I tell when I am about to ovulate (sorry for the details) but maybe it's just a coincidence. I haven't looked much into MS and hormones to know if this is possible.
Other symptoms can be mood swings, get emotional very easy, vivid dreams, hard to concentrate of stuff, or sometimes I can't get the word out of what I am thinking about, feeling out of it. Sometimes I experience like a shock in my head, like when something startles you. That isn't all the time, comes with some episodes, other times I don't have it. Like so far I have had one with this episode that has lasted over a week now. I can move my neck without problem of shocking sensation, and heat doesn't seem to make it worse. I love hot showers, and so far it doesn't get worse than what I am experiencing. Some episodes I can feel thirst all the time, a weird sensation in my throat. All these symptoms don't always come together or with specific episodes, it's just random. Except for the bright flashes of light, they are always there, and get worse with the episodes.
Like I said previously I was chalking all this up to some kind of hormonal imbalance since all tests have been normal thus far. Then with this last episode came the funny sensation in my left leg, and a day later started in my left arm. I'm not any weaker, and I can walk fine, but I am aware of my limbs. Sometimes they feel heavy, sometimes they ache in spots. It can change thru-out the day and be only in my leg, and move up to my arm, or be only in my arm, then both. Seems like it can switch to different areas of the limb as well thru-out the day. I also got a new sensation in spots that come and go. Almost like a light buzzing in spots of my feet and legs.
I was telling myself perhaps it's fibromyalgia, or Chronic Fatigue Syndrome, but this last episode has me wondering now. I believe my Neuro only did a brain MRI, should I ask for a 3t mri of my spine, and brain, or the CFS? So far my insurance has been good as far as coverage.
Sorry for the long reply, hoping it's not too confusing to read or make me sound nuts. From what I've been reading on here, a lot of people feel crazy with there symptoms.
Re: New here, undiagnosed and confused.
You really need to see a neurologist that specializes in MS. It makes a huge difference.
While you could have MS, there are about 400 illnesses that mimic the symptoms of MS. No matter what you have, MS or not, the original advise I gave you will be beneficial to your health. Hope you are feeling better soon!
While you could have MS, there are about 400 illnesses that mimic the symptoms of MS. No matter what you have, MS or not, the original advise I gave you will be beneficial to your health. Hope you are feeling better soon!
Re: New here, undiagnosed and confused.
Thank you very much for your responses, ElliotB. I can't explain how much I appreciate it. I called out of town to Johns Hopkins MS Center, and I am having my Neurologist Office fax down the paper work they need to determine if they think I should be seen. Hoping for them to agree to see me, and run some more tests. I'm ready for answers.
Re: New here, undiagnosed and confused.
stmgirl, i know what you are going through..in 2008 i was dx with fibromyalgia with out any testing, over the years they have said ms symptoms of the leg. i have chronic wide spreed pain, muscle pain with electric like sensations.. i have lost complete function of my left arm and leg that took weeks to return to as normal as can be.. i have speech issues, confustion, abnormal gait. b12 vry low i walk like i am drunk..... weakness, fatigue, optical neuritis and one active lesion next too bright white matter in the t2 flair
they have not done an mri of my back..or any other form of testing.. they say the migrains are just that and that the muscle spasms and convultions are phycogenic and that i have conversion disorder... i just dont buy. i am on neuro #3 who said conversion because my primary md had it in my chart.. he told me that i was disabled and prob wouldnt be able to work for a year or more.. but head refuses to explain conversion or explain what my symptoms are and why i cant work...
i just want to know what the heck is really going on with me and how to get the right dx
they have not done an mri of my back..or any other form of testing.. they say the migrains are just that and that the muscle spasms and convultions are phycogenic and that i have conversion disorder... i just dont buy. i am on neuro #3 who said conversion because my primary md had it in my chart.. he told me that i was disabled and prob wouldnt be able to work for a year or more.. but head refuses to explain conversion or explain what my symptoms are and why i cant work...
i just want to know what the heck is really going on with me and how to get the right dx
Re: New here, undiagnosed and confused.
It's a psychological diagnosis.nlminstl wrote:they have not done an mri of my back..or any other form of testing.. they say the migrains are just that and that the muscle spasms and convultions are phycogenic and that i have conversion disorder... i just dont buy. i am on neuro #3 who said conversion because my primary md had it in my chart.. he told me that i was disabled and prob wouldnt be able to work for a year or more.. but head refuses to explain conversion or explain what my symptoms are and why i cant work...
i just want to know what the heck is really going on with me and how to get the right dx
http://www.mayoclinic.org/diseases-cond ... N-20029533
Conversion disorder, also called functional neurological symptom disorder, is a condition in which you show psychological stress in physical ways. The condition was so named to describe a health problem that starts as a mental or emotional crisis — a scary or stressful incident of some kind — and converts to a physical problem.
-
- Similar Topics
- Replies
- Views
- Last post
-
- 12 Replies
- 2502 Views
-
Last post by JohnC777