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Old 09-13-2009, 06:52 PM   #1
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Jenny C. HB User
Any information at all would help

Hi There,

I am just writing to see IF anyone out there can help with my symptoms, I once again am experiencing.
I will try to make my story short....
I had half of my thyroid removed 3 years ago, and all of my health issues began a 1 year afterwards...coincidence, I honestly don't know, that is why I am posting to see IF anybody can help with information.
I go into spells where I have horrible muscle aches, these spells come and go.
My last spell, before this one, I am currently having, my vision got all blurry, and then the horrible muscle aches started. Every muscle in my body hurts.
I have feet pain, everyday,(ever since my very FIRST spell. the feet pain remains, it never leaves) when I wake up in the morning, I can hardly walk, like to go down steps, is very difficult.
they have diagnosed me with Fibromyalgia, low vitamin D levels, chronic dry eye. SO needless to say, it is frustrating to have all these diagnosis's, and still really have no answer as to what is causing ALL of these symptoms, they have ran numerous test, and everything comes back normal.
I switched family practice dr.s, and this new one said, maybe MS?? She recommended getting an MRI, while I am in a spell...which I currently am having...My symptoms are...Horrible muscle aches, and weak feeling in my legs, my legs are actually shaking when I am standing for long periods?? But this time, my eyes are clear. Does this sound like any thing any of you, have done...Should I call the Dr. and get the MRI done, or should I wait, and see IF this spell passes?
I am just soo tired of all of this, I am just hoping maybe somebody out there, could help and share stories, as to what you have been through.

Thanks for reading, and any information at all would be greatly appreciated.

 
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Old 09-14-2009, 04:34 AM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Any information at all would help

hi Jenny. MS is a condition which affects the nerves. The central nervous system to be exact. (Brain, Eyes and Spine).

what you are describing doesnt scream MS to me; however, it does actually sound like a B 12 defieciency. What are you doing about that and when was the last time your levels were tested?

You could certainly explore MS and other neurological diseases, and having a MRI wouldnt hurt you- thats where they would start...but I wouldnt stress yourself out worrying about this. You keep saying you have horrible muscle pain- thats not a MS symtom...you also talk allot about foot pain, again, not a MS thing. Not the way you describe it anyway. MS affects the nerves so that tingling and burning might happen, thats usually in the hands and fingers, and can also affect the feet....but not feeling like a muscular pain. Theres a huge difference. Im not saying its not possible for you to have MS, but its not screaming MS symtoms at this time.

Im glad you found a new doctor, and if it makes YOU feel better to have more testing done, then you should have it done! I hope you feel better soon.
Nikki
__________________
RRMS- dx 05

 
Old 09-14-2009, 11:05 AM   #3
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Jenny C. HB User
Re: Any information at all would help

Hi Nikki,

Thank You for your quick response...THANK YOU for the information, I really APPRECIATE it!!!
This new Dr. tested my B12 and said I was good. She told me my vitamin D was low, so they put me on that.
I have had soo many test ran....I honestly think they think I am "Nuts"..
Back in the spring, when my vision was soo messed up, the eye Dr. told me she thought I had an autoimmune disorder, which was causing all of my symptoms...they tested me, for a few of those, and they all came back negative. They did tell me I have the Epsteen Barr virus, which is from having Mono, in my life, they told me I have chroinc fatigue, which comes from the Epsteen barr. That is really the only two things they have ever found in all the blood work they have done on me, is my Epsteen Barr levels, are extremely high, and my Vitamin D was very low.
So it is just frustrating, to be feeling all of these symptoms, and not knowing what is causing it all. I do get a burning feeling in my muscles, also on occassions, some tingling...but that isn't very often, my main complaint is the aches.
I really wonder if it is from my thyroid surgery...I was FINE, until I had half of that taken out, and it has been a downhill spiral on my health since. They keep checking my levels, and say I am Normal there too...SO who knows, I do think this new Dr. will find it, IF there is anything there. She really listens to my complaints.
You have made me feel better, knowing that the musles don't ache with MS, because I was thinking, that is probably what I had...SO THANK YOU for your helpful information..I soo appreciate you taking the time to share with me, the knowledge you have learned, since all of this is new to me.
Thank You again, for listening!!!

 
Old 09-14-2009, 01:59 PM   #4
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Re: Any information at all would help

Jenny- youre so welcome! Sorry this one took longer for me to respond to, but I was working all day, away from the computer.

I dont know that much about Thryroid, so I cant help you there...but I do think you need to explore what is going on further..I hate to think that anyone thinks you are "nuts" and if they do, time to find another doctor!! Sounds like your current physician might be able to help you- and it also sounds like you are really stressed out about all this. Try to relax- know that whatever it is, isnt the end of the world, and is probably nothing...and that when you get to the bottom of it, youll feel better. This is called "light at the end of the tunnel".

I hope you feel better soon...in the meantime, just a suggestion, but try to keep your body from overheating...stay away from heating pads and hot showers for a few days and see if it helps. IF its neurological, heat can aggravate conditions...if you dont see any change, probably its not neurological and is thyroid related.

Let us know what happens.
Hugs,
Nikki
__________________
RRMS- dx 05

 
Old 09-15-2009, 05:33 PM   #5
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Join Date: Oct 2006
Posts: 165
Jenny C. HB User
Re: Any information at all would help

HI Nikki,

Thank You again for ALL of your helpful information. You are a sweetheart!!!
Sorry, I am soo slow in responding back, to say "Thanks Again"...I am just hardly ever online.
I will keep you posted.

Thanks Again!!

 
Old 09-15-2009, 07:59 PM   #6
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jtubman HB User
Re: Any information at all would help

Quote:
Originally Posted by Jenny C. View Post
Hi There,

Jenny,
I would suggest you see a rheumatologist, as the muscle pain and weakness could be symtoms of Polymyositis(an auto immune disease), as my wife has a similar disease called Dermatomyositis (has muscle weakness and a nasty rash). The two drugs that work the best for her are Minocin (worked up to 200 mg taken every second night) , and Low Dose Naltrexone (or LDN). Both drugs are very safe, inexpensive, and quite effective on almost all auto immune diseases, and even some other diseases like MS. Also LDN at 4.5 mg per night is a great thyroid regulator (sometimes you have to start at lower doses and work up slowly). Best of luck

-Jim

I am just writing to see IF anyone out there can help with my symptoms, I once again am experiencing.
I will try to make my story short....
I had half of my thyroid removed 3 years ago, and all of my health issues began a 1 year afterwards...coincidence, I honestly don't know, that is why I am posting to see IF anybody can help with information.
I go into spells where I have horrible muscle aches, these spells come and go.
My last spell, before this one, I am currently having, my vision got all blurry, and then the horrible muscle aches started. Every muscle in my body hurts.
I have feet pain, everyday,(ever since my very FIRST spell. the feet pain remains, it never leaves) when I wake up in the morning, I can hardly walk, like to go down steps, is very difficult.
they have diagnosed me with Fibromyalgia, low vitamin D levels, chronic dry eye. SO needless to say, it is frustrating to have all these diagnosis's, and still really have no answer as to what is causing ALL of these symptoms, they have ran numerous test, and everything comes back normal.
I switched family practice dr.s, and this new one said, maybe MS?? She recommended getting an MRI, while I am in a spell...which I currently am having...My symptoms are...Horrible muscle aches, and weak feeling in my legs, my legs are actually shaking when I am standing for long periods?? But this time, my eyes are clear. Does this sound like any thing any of you, have done...Should I call the Dr. and get the MRI done, or should I wait, and see IF this spell passes?
I am just soo tired of all of this, I am just hoping maybe somebody out there, could help and share stories, as to what you have been through.

Thanks for reading, and any information at all would be greatly appreciated.

 
Old 09-15-2009, 10:36 PM   #7
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RobinLeigh HB User
Lightbulb Re: Any information at all would help

Just as a side note, there have actually been studies done about the connection between epsteen barr virus and MS, I don't know tons about it but theres a lot of reading you could do about it to see if anything fits with your symptoms

 
Old 09-16-2009, 01:10 PM   #8
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Join Date: May 2009
Location: Alabama
Posts: 20
apeter HB User
Re: Any information at all would help

Preface: This is going to sound kind of crazy and I only mention it because you said you felt like your problems started after your had half of your thyroid removed.

A close friend of mine had half of her thyroid removed and had a plethora of multi-focal health issues after that. She went to many different kinds of doctors and had many tests done with no definitive answers. At the end of her rope she decided to go to an acupuncturist in hopes of getting some relief from her pain. The acupuncturist told her that after you have an organ, gland, or any body part, even teeth, removed your body can get very "upset," still looking for the missing part. She went onto say that one needs to tell the body that the gland is gone, its not coming back, and it needs to return to business as usual. Sure enough after 8 weeks of acupuncture my friend was feeling almost completely better.

Now who knows if it was the acupuncture or not, but my friend swears by it. I know after personally having months of pain without a diagnosis I would eat bugs three times a day for 8 weeks if I had the slightest chance of helping. Eastern medicine has a completely different thought process and foundation of beliefs than Western medicine, but it has been around for thousands of years and is worth considering.

Good luck to you!

 
Old 09-18-2009, 11:57 AM   #9
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Join Date: Oct 2006
Posts: 165
Jenny C. HB User
Re: Any information at all would help

Thank You ALL, for the wonderful advice..I have been away from the boards for a few days, so I haven't seen everyone posts....
I will defitnitely read up on everything everyone has recommended...

Thanks again!!

 
Old 09-18-2009, 01:40 PM   #10
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Join Date: Dec 2003
Location: Martensville, SK
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skewch HB User
Re: Any information at all would help

Jenny,

I had a total thyroidectomy almost 5 years ago due to Hashimoto's disease. Sometime during my 5 days in hospital I suffered an attack to my bladder. Because of the other complication of the parathyroids dying afterwards, I didn't even pay much attention to the fact I had a hard time peeing. I went months before I was "fixed" with medication for extreme low calcium, but just last week I got the confirmed diagnosis of MS.

The only advice I can offer is don't let any doctor just shrug things off when you approach them. I have been suffering too long and now finally someone is doing something for all of my issues. We're working on one at a time, it's horrible to think I'm happy with my diagnosis, but I am glad that they can finally treat me.

I wish you good luck with your health

 
Old 09-18-2009, 02:25 PM   #11
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Join Date: Oct 2006
Posts: 165
Jenny C. HB User
Re: Any information at all would help

Boy is that the truth.....I am sorry to hear you just got diagnosed with MS, but I know EXACTLY what you are saying... I understand that fully! I know how you feel, just knowing someone actually is listening, and found the problem. I am sure you are feeling like..Finally.., because now they can treat you. God Bless You, I know that is a hard diagnosis to hear, but I too am glad for you, that they found your problem. I am sorry it is such a hard diagnosis, but I am glad you finally got someone to listen after 5 years, and take you serious, and find your problem, now, they can treat you, and maybe you can get some relief.
When they removed my thryoid, 3 years ago, they removed two of my parathyroids, and this new Dr. I am going to, said, she thinks that is why, my vitamin D level is soo low, because of me only having two parathyroids left...You would have thought all the other Dr.s would have been watching that on me..but they just act like I am nuts.
All I know, is these muscle aches and all of my health issues aren't normal....there is something causing it, and I am not nuts.. This new Dr, said, that low vitamin d can cause alot of my symptoms I am having, but I have been taking the vitamin D for two months now, and I am still having my spells, I don't know...it might all be related... Thanks for the great advice, that is all I can do is keep plugging away, and HOPEFULLY, this new Dr. will find the problem. I know out of all the Dr.s I have seen over the past three years, she is listening to me. So I defitnitely have hope in this one.

Good Luck to you with your health, keep me posted on how you are doing.
Hugs!


Quote:
Originally Posted by skewch View Post
Jenny,

I had a total thyroidectomy almost 5 years ago due to Hashimoto's disease. Sometime during my 5 days in hospital I suffered an attack to my bladder. Because of the other complication of the parathyroids dying afterwards, I didn't even pay much attention to the fact I had a hard time peeing. I went months before I was "fixed" with medication for extreme low calcium, but just last week I got the confirmed diagnosis of MS.

The only advice I can offer is don't let any doctor just shrug things off when you approach them. I have been suffering too long and now finally someone is doing something for all of my issues. We're working on one at a time, it's horrible to think I'm happy with my diagnosis, but I am glad that they can finally treat me.

I wish you good luck with your health

 
Old 09-20-2009, 10:57 PM   #12
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Cazow HB User
Re: Any information at all would help

Hi Jenny
OMG your story sounds like mine.
I had half of my thyroid removed in Oct 2006 due to a 3cm nodule and then things went down hill slowly from there.
For the last 16 months I have had major muscle pains, twitching and cramps.Its mostly in my legs and would come and go, Now it seems to be staying for longer periods of time.I also have muscle fatigue and can't exercise the way I used to.I have also started with tingling in my hands and feet.It is not a numb feeling but just pins and needles.I also get tingly around my lips.I have also had alot of twitches all over my boby.
During my surgery I also had 2 of my parathyroid glands removed. I have had all my thyroid tests done and am on the higher end of normal but dr will not put me on meds yet. He says my calcium and vit D are ok and so we are still searching for answers. He did send me for a MRI without contrast that came back normal. I pushed to get a referral to a neurologist and am waiting for an appointment date.I want to make sure that I am really check for MS and anything else.
My dr has said that I have fibromyalgia but I am not convinced. I really think something is going on with my other half of my thyroid but no one is listening to me, its very frustrating.
In the mean time I try heat to relax my muscles and take my calcium etc. I do find stretching out my legs really help. Haven't really found anything to help with the tingling yet.
Good luck.

 
Old 09-21-2009, 05:27 PM   #13
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Jenny C. HB User
Re: Any information at all would help

Wow Cazow,

You sound SOOO much like me.... Yes, they have said, I have fibromyalgia too..I do think all of my issues are caused from my thyroid. There has to be a link....they all think I am crazy, but come on, it is just too coincidental.
Let me know, what all they figure out with you, and I will do the same with you...IF we put our heads together, two minds are better then one...So maybe between the two of us, we can figure out what is going on with our health.
Keep me posted..Good Luck to you as well!!

 
Old 09-22-2009, 07:52 PM   #14
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Cazow HB User
Re: Any information at all would help

Jenny
I totally think there is a link. So many of our symptoms minic other diseases and its so easy for the doctors to settle on one thing and not look any further. I know my body and I feel that there is something going on. The only good thing for me is that I am now waiting to see a neurologist to help rule out MS. I am still going to ask for a refferal to an endo as well. Have you seen an endo?

 
Old 09-23-2009, 06:44 AM   #15
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Jenny C. HB User
Re: Any information at all would help

Hi Cazow,

No, I haven't seen an endro. The Dr.'s office that did my thyroid surgery 3 years this coming November, they are the one's who follow my thyroid levels still. I think that I should go to a endro, since they specialize in the thyroid, versus, still seeing the surgeon, since their specialty is surgery, but they haven't released me yet.
I have gone to a rheumotologist, and he tested me for one autoimmune disease, since I have chronic dry eye...But that came back Negative, so again, he just looks at me, like I am crazy, and I am fine, and it is all in my head. It is very frustrating, because like you said, we know our bodies, and we know this isn't normal...So this new family practice Dr. that I am going to,now, she is the one who suggested possible MS. Since my eyes get soo blurry at times, but they have told me the blurriness, can be caused by the chronic dry eye.. so who knows....all I know, is everytime, I think they may be on to something, I get excited, and then all the tests come back negative, NOT that I want to have something wrong, because I certainly DON'T, but when I go into my horrible muscle aches and my spells, I know that ISN'T NORMAL...and Honestly I think they just say Fibromyalgia, just because they don't know, what is causing the problem...but my thinking is, something is causing the Fibromyalgia, when your body hurts, it is telling us, that there is something wrong. Our bodies are amazing machines, when it is screaming at us, by sending tons of pains and symptoms, I think the Dr.s need to listen, and find the problem. And not just brush us off, like we are just nuts.
Oh well, that is why we need to just keep plugging away, until we figure it out, ourselves.
So keep me posted on what all you find out, and Good Luck with your upcoming appointment.

Last edited by Jenny C.; 09-23-2009 at 09:43 AM.

 
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