hello my name is chad and i'm 42 years old and i've been having weird things happen to me since about november, let me start there.

my father who battled cancer had finally lost his battle to his cancer in november which is about when i started to notice changes, i thought the changes were from the emotions of the loss of my dad but as time went on i have noticed more and more. by the time february came around i was missing a lot of work as they said i had irritable bowel syndrome and put me on a barage of meds. well by the time march came around my job fired me for missing too many days, at this point i was having headaches everyday almost non-stop which would flare into a migraine at the drop of a dime, then my left eye would go blurry. i would have this feeling of pins and needles run down my arms and get numbness in my fingers, and i stumble around, run into walls and trip like i have no balance control, my lower half hasn't went numb but tingles thank god, if i don't write things down i cannot remember them.

i get tremors a lot almost like my body is totally shaking on the inside if that makes sense. i cannot go out in the heat anymore as it makes me shake even worse, i used to take very hot showers and now had to be for the most part cool or i get nausea so bad it makes me have to lay down. by this time i have been to3 different family drs. who keep saying it is anxiety and depression they are full of it it seems all they do is read each others reports. well i finally found a good fam dr who cares and is willing to run every kind of test till we figure it out, i got referred to a neuro who i went and seen and what a joke he turned out to be, he hardly looked at my mri of my brain which came back abnormal, i told him i had a severe case of mono about nine yrs ago he didn't seem remotely concerned about it, his diagnoses was he said i had the migraine gene-now howe can he come up to this if there wasnt any testing for it?? i also told him i have this jaw pain on the opposite side of my one sided migraine that goes int my ear and is very painful he told me to go see a dentist and told me to quit taking my pain meds and use a heating pad and most of all find a hobby.

now i don't know a lot but i know when i'm in severe pain and this guy tells me to quit my pain meds. as far as the heating pad i told him i cannot be around heat of any kind and he said WHY. he told me i have anxiety and depression and i told him that if he had to live with whay i have he would have anxiety and depression and i walked out of that visit. i know have an appt next week with a neuro that's specialty is ms. hopefully they can figure this out as i have been living on retirement since april(medicaid pending) and i'm almost broke due to all these drs i've had to see and all the different meds i have been put on.

i'm sorry i wrote a novel but i but i feel i have been let down by the very ppl that are supposed to help and I'M SCARED!

one thing that happens more frequent now is the bottoms of my feet feel like someone is hitting them with a hammer.

my meds incude daily:
neurontin= 300 mg 3 times a day
oxycodone= 5 mg 4 times a day
proprananol for bp 2 times a day
paxil 40 mg once a day

let me say that it is one of the most frustrating things to try and get people to understand what you are going through and ALL of them including some family think you are faking an illness.

my last mri of my brain was done with ans without contrast and it came back saying:
scattered nonspecific punctate t2 and flair hyperintensities within the supratentorial white matter of both cerebral hemispheres, findings associated with no surrounding edema, mass effect or abnormal enhancement. this may result to gliosis from previous traumatic infectious/inflammatory or vascular events. similar changes can be seen transiently in patients with migraine headaches. demyelinating process such as multiple sclerosis is not entirely excluded. neoplasm is felt to be unlikely follow-up mri in 3 to 6 months.

now i really don't know what that means and no one has explained it to me but when i seen the first neuro i filled out 9 pages of questions about my history and guess what they sat behing the doctor the whole time and he never bothered to look at them, this doctor was from florida and came here to arkansas his name was gotfried jean-louis first off he was french and i just couldn't understand him. the only tests he did on me that day was he checked my reflexes and checked to see if i could feel this vibrating thing on my feet, i told him at that time i wasn't having any feet problems. then the only other thing he did wasask me how many fingers i saw him holding in my peripheral vision, he automatically said i have the "migraine gene" i have no family history of migraines and i have never had them before. i did a little research and found that there is a such thing as a migraine gene however it still is so newly found they cannot diagnose you with it by looking at you.

I was so frustrated when i was telling him all the things wrong with me and he either didnt listen or didnt care. at the time i was taking hydrocodone for my migraines/and or the constant headache i had in between migraines, he tells me to quit taking them and then told him about my jaw pain when i chew it shoots a pain into my left ear and does to this day he told me to go see a dentist, as far as the spactisity i get in my hands and feet and i mean my fingers will draw up in a major cramp and my feet have cramped so bad it has woke me up many of nights, he told me spactisity isnt associated with ms.

i also told him i CANNOT be in or around any heat or i get the whole body shakes something bad, so he tells me to use a heating pad on the base of my skull( i guess he wasn't listening) when told about the twitching i get pretty regular he didn't say one word. i told him sometimes i see spots floating around out of my left eye which went blurry for a long time now and sometimes i see what looks like car lights passing by but there is no cars and all he could tell me was to get a hobby. when i asked him if he thought it could be ms he proceeded to look at only 1 of the pictures on my mri and showed me this one area(and again dont know what i was looking at) and he told me that ms would only appear here.

i'm not a doctor but i have to disagree with what he just told me, one last thing i told him was my memory and thoughts are really messed up, i used to do a lot of work with computers and now have trouble remembering where certain keys are and i have to ask a lot of times in the middle of a conversation-what was i talking about, and he wasnt even concerned about that! so once again i have to self pay everything (medicaid/medicare pending) and he cost quite a bit of money for absolutely nothing, the only thing he did change was he took me off norvasc for my bp and put me proprananol as he said it would help with my pain, the pharmacist was wondering why he would tell me that as she said there really isn't any pain properties in it.

the only problem with me is i am living on my retirement and i am running out fastly and cannot afford to keep getting doctors/specialist like that. i am going to a neuro that specializes in ms on wednesday so hopefully i am going to keep my fingers crossed.

my gp has run so many blood and urine test i could turn blue but she wanted to rule everything out. she is the 4th doctor i had went to and she really does care she said we will not let one stone be unturned. i just wish and this is my opinion that doctors and specialist would go back to the oath help now worry about money later but i guess those days are gone.

in addition to eveything else the night sweats have returned and no doctor to date can give me an explaination, i will wake up 2 to 3 times a night soaked as if i took a shower i have no fever when this happens i just have to change clothes, sheets and i have 3 different pillows to switch out with each and every time, when i finally do get up i know its going to be a bad day as it makes me feel drained i get insombnia quite often also, and now my ibs is flaring up, it hasn't for a month or so but now it had been alternating between "D" and "C".

about 9 years or so ago i had a severe case of mono which i wouldn't wish on my worst enemy! i wonder if it has something to do with my condition even though my last neuro wasn't concerned with it.
about two or so months ago the glands in my right armpit swelled for no reason and hurt only lasted a few days and went down right before my gp appt she said to me she could feel anything at that time but she said something about lymphoma but she said we will deal with that as a last resort.

i had on my last blood/ 24 hour urine showed my serum testosterone level was low at 134 and the free testosterone was low at 4.7 i am some gel now you rub on your arms but if it is supposed to make you feel better it don't.

Hi there
I have done some spacing of paragraphs to make it easier to read your post, as it is very hard to read otherwise.

I hope you find the help you need here

Wow! I am so sorry you are going through all of this. First of all, stick with your GP. She sounds like a winner and is willing to get to the bottom of all of this.

Sometimes things take a while to be dx. Not what you want to hear right now but it happens. Keep a journal, if you can, of all the things going on with dates and how long the symptoms lasted and/or if you still have them. It's hard to do and, quite honestly, I never really did. But, they may help to identify a pattern.

It sounds like something is definitely going on with you. Of note, there was some sort of virus going around in November/December that many people I know have had lots of trouble since then - headaches, weird neuralgias, muscle spasms, etc. It is possible that this is the case with you. So far, I know of about 7 people who had gone through and/or are still going through it after having a virus around that time.

Migraines can do some weird things to people as well. They can be very debilitating.

I am glad you are going to an MS specialist and hope that you get some answers when you see him/her. Your GP has already started to rule out other things which will be helpful in your dx process. Take your MRIs, your journal, and any other tests with you. Be prepared to discuss them with the new neuro and don't let them brush you off.

Let us know how you are doing and how it goes with the neuro. Come on here anytime as you will find lots of great information and support. Hang in there.

1st step is MRI of Brain & Cervical. Get it on cd and check it yourself that night.

Testosterone in the 100's is barely double a womans level! We're supposed to be 600 give/take depending on age. Teens are likely 1000, senior citizens less then 1/2 that. I used the gel at first cause my dr was new to testosterone. For the past 3 years i've been injecting .5mL weekly which is 200mg/mL so 100mg's is what I do. 80mg's is plenty unless you're trying to put on muscle. Get rid of the gel. Shots are so much better & 1/10 the price. If insurance co's knew how cheap injectable was they'd never pay for gel. I keep my level around 8-900.

edit - stress might've triggered my MS in 2006 after moving in 2004 so do what you can to mellow out.

im going to tell you the same thing I just told another nice young lady who found her way here.

First, breathe, just breathe! this is a long haul process to become diagnosed for 90% of us, and its almost never as easy as walking into an MDs office and having them sit down on the first test and say "oh, you have MS" it normally takes years to be diagnosed.

Getting that diagnosis is like a rule out process. There are more than 100 diseases that can mimic MS including the brain lesions, the fatigue, the heat intolerance, and so forth. So, your MD will start with that 100. My best advice is to seek out an MS center. They deal with the subtle nuances of this disease all the time. They are the pros at this. Even if you only see them once for your diagnosis or rule out and then see your local guy, its so worth it.

So, lets start with the 100. There are easy ones to look at like Vitamin D def, or Vit B def. They can use a regular blood test to rule that stuff out. Migraine syndrome (some can be silent) is another that can be kept in the running for a long time. Lupus, Lyme, sjoghrens, and several other big name goodies can be ruled out with another round of blood tests. Once your MD has run the list of 100 down to a list of 10 or so, it then becomes a guessing game, or a game of what fits best in YOUR catagory of symptoms. MS is like a finger print. no two of us have exactly the same sx at the same rate and style.

Your MD will then look at Devics and other such things along with MS. Guillan Barre and so forth. There is NO single blood test or even MRI test that can say "oh yeah, she has MS" they look at the pattern of lesions around the ventricles of where the blood flow enters the brain. If you have lesions in other areas it doesnt mean you do or dont fit in the crowd. So, you need some patience, and some tenacity.

Please dont let all the language and stuff overwhelm you. Let the big boys sort that out. That is why they went to 100 years of college and practiced on folks for years before they chose a specialty. If you want to look up words one by one, you may or may not understand them. The best advice is to sit with YOUR MD and ask. What does this mean for ME? For some folks this little blip means nothing. For others it means drastic changes are coming. So...have faith. have patience. Take some time to get your paper work in order, because once anyone actually writes on paper that YOU have MS...you WONT be able to get life, health, disability or long term care insurance. If you can get some of that stuff now...DO IT!

So, pull up a chair and talk with us. Breathe, and remember that its a long process to get a cemented diagnosis, and even then, its a marathon, not a sprint. STep by step.

I did copy and paste it, because its so hard to write that much twice in one morning. Im sorry you are on this road, but glad you found folks here to help you sort it all out.

The blue is pretty but is hard to read......

I am sorry you have had such trouble with doctors, don't let that stop you from finding a good one. And don't keep one that won't listen to you. It is your body and no one is going to care more than you about what is going on with it.

Some people think I look up too much stuff in the internet, they prefer to be lead blindly down what ever path a doc leads them. I have worked for enough doc's to know they can have good days and bad days. Heck I even worked for one that was a severe diabetic...now that was a trip, he would be nice in the morning and fire you by lunch time if his sugar was off. The point is they are just like us, unfortuanately they are not perfect, just like us.

You are your own best advocate, become well armed and fight to get the answers you need and deserve.

Jeanne

Before I was diagnosed with MS, I once had a doctor tell me that, first of all, I needed to throw away my walker and my cane and any other assistive aids I was using. Then she told me to go on a diet and get some exercise. I, on the other hand, told her that I didn’t come to this hospital for a pep talk. I came for a diagnosis. If she could not provide me with a diagnosis, I’d just find someone who could.

And so I did!

At this point I think it is very important for you to ignore the folks who want you to believe that it is all in your head. They aren’t bad people. They are probably not even all that incompetent. They are simply WRONG. Don’t let them upset you. Just continue your quest for the truth.