Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hello,
I would like to see if you guys could look at the following symptoms I have and let me know if you can think of anything else I could possibly have. I KNOW you are not doctors. I hope you are my friends. You know how it is with friends you tell them how your feeling and they say "what kinda symptoms are you having?" and you tell them and then they will usually tell you different things you could have because they might have read it somewhere or watched it on ER or Discovery Medicine. So would you, my friends, mind helping me out here? I am pretty depressed right now because of a lotta things. My best friend of 12 years, my Boston Terrier Lessa Ladybug had to be euthanized on Tuesday at 9:00am. It was an acute emergency so we were not prepared. Plus there are a lot of other failures and problems going on right now in my life. I just need to get on the right track with these health problems. I know i have fibro but lots of stuff i have is NOT fibro.
So anyway, I wont take up anymore of your time. I will start the list of symptoms: 1)whole left side of body has issues starting with mostly left sided headaches, very sharp pain in left ear for years now, ringing in left ear, left eye protruding and out of alignment with the right eye. Severe dry eye which is worse in left eye, swollen node on neck near ear, sharp quick pains in upper jaw, less muscle tone on left arm and left leg--they look smaller than the right side, left foot is completely screwed up--eczema and super dry skin, extreme nerve pain, squishy feeling top part of foot, occasional swelling, occassional no feeling, pins and needles all up and down that side. Oh yeah all my left toes look like they are half the size of my rite toes.
~~~~~~~~~~~~2)chronic muscle contractions happening mostly in my legs and in my feet
~~~~~~~~~~~~3) jerky movements with my hands, foot, shoulders, head, and heart and stomach (feels like it anyway)
~~~~~~~~~~~~4) Toes always moving and jerking and dancing around all on their own. I know that I am not sending messages to my brain for them to do that at least.
~~~~~~~~~~~~5) Dry patches of skin, I guess flakes and some small and medium sores all over the left side of my scalp.
~~~~~~~~~~~~6)Sometimes (left side only) it feels like my scalp has something under it and my skull that is moving, kinda rippling across. I actually felt it one time and it felt hard, the little bumps that rippled across they did not feel like they were hollow, they felt solid/
~~~~~~~~~~~~7) Severe crushing pain starting on my left side where my floating rib is and then quickly meeting a second band from the right floating rib and a squeezing band that just quickly met up with both of them on my back -- so intense it made me quickly sit on floor and totally gasp from the sheer pain of it. Freaked me out more than my first contraction I had with my 8 pound baby boy.
So thats it pretty much along with the fibro symptoms like pressure points muscle aches and pains, nerve pain everywhere, extreme fatigue and fibro fog.
I would really apreciate anythihng yall can think of cuz I am totally whipped. I have not slept even one hour since my sweet baby Lessy died. I feel afraid to sleep and that freaks me out to. Love you guys even if some of you dont even like me anymore.
Irish
I would like to see if you guys could look at the following symptoms I have and let me know if you can think of anything else I could possibly have. I KNOW you are not doctors. I hope you are my friends. You know how it is with friends you tell them how your feeling and they say "what kinda symptoms are you having?" and you tell them and then they will usually tell you different things you could have because they might have read it somewhere or watched it on ER or Discovery Medicine. So would you, my friends, mind helping me out here? I am pretty depressed right now because of a lotta things. My best friend of 12 years, my Boston Terrier Lessa Ladybug had to be euthanized on Tuesday at 9:00am. It was an acute emergency so we were not prepared. Plus there are a lot of other failures and problems going on right now in my life. I just need to get on the right track with these health problems. I know i have fibro but lots of stuff i have is NOT fibro.
So anyway, I wont take up anymore of your time. I will start the list of symptoms: 1)whole left side of body has issues starting with mostly left sided headaches, very sharp pain in left ear for years now, ringing in left ear, left eye protruding and out of alignment with the right eye. Severe dry eye which is worse in left eye, swollen node on neck near ear, sharp quick pains in upper jaw, less muscle tone on left arm and left leg--they look smaller than the right side, left foot is completely screwed up--eczema and super dry skin, extreme nerve pain, squishy feeling top part of foot, occasional swelling, occassional no feeling, pins and needles all up and down that side. Oh yeah all my left toes look like they are half the size of my rite toes.
~~~~~~~~~~~~2)chronic muscle contractions happening mostly in my legs and in my feet
~~~~~~~~~~~~3) jerky movements with my hands, foot, shoulders, head, and heart and stomach (feels like it anyway)
~~~~~~~~~~~~4) Toes always moving and jerking and dancing around all on their own. I know that I am not sending messages to my brain for them to do that at least.
~~~~~~~~~~~~5) Dry patches of skin, I guess flakes and some small and medium sores all over the left side of my scalp.
~~~~~~~~~~~~6)Sometimes (left side only) it feels like my scalp has something under it and my skull that is moving, kinda rippling across. I actually felt it one time and it felt hard, the little bumps that rippled across they did not feel like they were hollow, they felt solid/
~~~~~~~~~~~~7) Severe crushing pain starting on my left side where my floating rib is and then quickly meeting a second band from the right floating rib and a squeezing band that just quickly met up with both of them on my back -- so intense it made me quickly sit on floor and totally gasp from the sheer pain of it. Freaked me out more than my first contraction I had with my 8 pound baby boy.
So thats it pretty much along with the fibro symptoms like pressure points muscle aches and pains, nerve pain everywhere, extreme fatigue and fibro fog.
I would really apreciate anythihng yall can think of cuz I am totally whipped. I have not slept even one hour since my sweet baby Lessy died. I feel afraid to sleep and that freaks me out to. Love you guys even if some of you dont even like me anymore.
Irish
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
Good to hear from you! I don't understand why you had a dx of PROBABLE MS in 2010 and they still have not given you a MS dx!! That is a long time to go without disease modification treatments that basically slow down or even halt the disease process for a very long time! I feel so upset for you. I am happy to hear about you going to that great specialist. Hopefully you can get the dx and start out taking those med.
Unfortunately I have had my MRI and I do have some kind of blood vessel damage and several blood tumors along my spine." Apparently they are not serious but they are so big that you can actually see the lumps on my back and they do cause me pain. I sometimes wonder if they could be the source of all my nerve pain. I have fibro but generally fibro doesn't come with that symptom. On the fibro board so many poor people suffer horrible nerve pain as well. Also fibro has no meds made to slow it down so that a woman who has severe leg pains may not end up in a wheelchair.
I am so lost right now. After all the radiologist read my MRI and then a MEWS specialist looked at it as well and both said no sign of MS. I am right now as I am talking to you going through what they call spasticity.my legs are literally going crazy...I am laying on top of my bed and both of my legs will suddenly become real taut like they are being stretched as far as they can go. Then they roll inwards towards toward each other and my feet turn completely inward so that my big toes almost touch. This went on for at least 30 minutes. It is now slowing down considerably but the left over effects are all of my toes are dancing so hard that they are pulling my feet down and it hurts.also my thighs are stretching out.
I have been having these real bad jerky movements like my hand, shoulder, my head (yes truthfully!) And I have felt a similar movement right on the left side of my heart and also my stomach did it.
I guess I just don't know what to do any more.My doc says I have to quit smoking. I asked him, "but what about all the symptoms and signs I have?" He just flippantly answered, "well I believe when you have quit smoking then all of your symptoms will go away. After all just think of all those chemicals your putting in your body" I mean he can't honestly think that right? Even my mom said that was stupid and she always wants me to quit smoking.
God Heidi my legs are going crazy again!! I have to pick up my boys in 30 minutes! How am I gonna drive our standard truck! I best be scooting so I can try and maybe walk this crap off!! I can't live like this for the rest of my life!! Luv ya girl! Tamye
You're not getting the answers you need and your quality of life is suffering greatly. Get thee to a new one who is willing to do a lumbar puncture, a full spinal MRI, an EMG, and everything else. Until they do a full spectrum of tests you're not going to get any answers. Push for the whole shebang. So far, if I remember correctly, you've had the brain MRI and the spine MRI but did you get the full spinal? Have you had a CINE MRI to test the fluid flow to your brain? Sometimes, poor fluid flow will cause symptoms like some of the ones you are describing.
The things on your spine can definitely cause your nerve pain. I have a cyst (syrinx) on mine and it causes pain, tingling, and numbness not only down my back but through my legs and hips, too.
With a EMG test you might get some more answers. I hope you get some things sorted out soon.
It's good to hear from you also! My best friend of 12 years, Lessa Ladybug was having pain last weekend and I tended her mostly. My mom came to visit on Monday and stayed through Thursday morning.My sweet little Lessy (boston terrier) had to be euthanized due to an acute heart problem. I was so glad my mom was with me, plus I had kept the boys home cuz I had a bad feeling before we went to the vet. My husband was in Florida for a business convention, I felt so bad for him cuz Lessa was the little girl we never had.
Anyway, I do plan on taking your advice. That one MS specialist that looked at my MRI was just doing me a favor. He only accepts people who have already been dxed with MS. So he referred me to a neuro that is supposed to be real good in Austin. After this freaky and completely surprising leg thing I experienced while writing to Heidi. That happened around 3:00, it is now 6:07 and it has calmed down a bit. However every once in a while it starts up and my feet are killing me cuz they were bending so much. Whats funny is that I normally I can't move my feet like that at all. My husband saw the action and asked if I wanted to go to the ER, but I said no cuz it's a $100 copay and I just had the unexpected expense of sending my little cutie to the Rainbow Bridge.
I will call that neuro on Monday and beg for an early appt. Life really sux sometimes. I have to see that neuro and I have to make shots appts to see an endocrinologist, a rheumatologist, my eye doc, and a pain specialist (for fibro). But getting answers that actually make sense and knowing that there is a possibility with each doc to get some healing meds or anything that will make life happier will be worth it.
BTW....you said you had to fire your neuro. Is he the one who dxed your Chiari? Was he setting up any kind of treatment plan for you? What kind of meds would you take for that? Finally how is that adorable little red headed angel of yours? Luv ya! Tamye
http://www.scribd.com/doc/90242205/A-case-of-multiple-sclerosis-improvement-following-removal-of-heavy-metal-intoxication
There actually is no treatment plan or cure for it. Surgery will help stop the progression, help restore fluid, and possibly alleviate some of the pressure. It may or may not help the symptoms. The cyst on my spine that it has caused is really large and over time, if left untreated, it can cause permanent paralysis. I already have partial parylsis in my arm so it's done its work. Many people have to get the surgery a second time. In addition to the Chiari I have two related disorders called Ehlers-Danlos Syndrome and cerviocranical instability. It's possible that within the next couple of months in addition to the brain surgery I will need to go back in and have my vertebra fused together. I will know on Monday.
Little one is doing fine.
I push the ER for you because, as someone who had undiagnosed epilepsy for years, they usually need to see the episodes in progress before they will take you seriously. For you to go in and say, "My legs are jumping like crazy" they might brush you off. To go in and say, "LOOK! My legs are jumping like crazy" is another ballgame. I had seizures for 18 years before they got diagnosed. Finally, in the middle of one in college, my professor called 9/11. Paramedics got there super quick and saw it in action.
Most people are deficient in magnesium and don't have any idea but it's what allows the muscles to relax again after they contract. I take 800 mg daily. Stretching is important too - not only for the muscles but it's said to help detoxify the body. I take magnesium citrate and you do have to work up gradually. You can google mark hyman on magnesium or carolyn dean, russell blaylock. Good info from all of them, especially Dr. Dean. She wrote the book on Miracle of Magnesium.
I've also stated using aloe. I was adding some to the blender to complete my raw foods (green) juice and got some on my fingers so I wiped it on the two small knuckle burns I had and the mark I had from my last blood test on my hand. They cleared up in just about a day, after having had them for a week. I was sold on the aloe.... plus it's supposed to do the same thing on the inside of our bodies. I read that it's going to be known as a cure for a lot of diseases.
While it's good to see a specialist, it's also good to pay attention to all of you and your body as a whole person, not just the fibro, or the ms, etc.
I hope you'll consider some of these natural ideas and seeing a naturopath as well - it's a whole different experience.
Good luck with these problems. I hope you get some relief!