NEW HERE..PLS HELP!!!!

[Blueeyedgrl]

In May of 2006 I was sitting at a baseball game and all of a sudden I got a feeling that came over me. I got a really warm feeling. I felt like I was burning up like I couldn’t control my body temperature. My head starting hurting so bad; it was a lot worse than a migraine. My face became number. I could pull on my face and ears and I didn’t feel anything at all.

I had problems walking and needed assistance walking. It felt like I was falling but I wasn’t falling. I guess that is called vertigo and that lasted until July of 2006. I couldn’t sleep and wasn’t able to eat hardly anything. I couldn’t concentrate or speak clearly. I wasn’t able to hold anything. I lost my grip on almost everything I grabbed.

My head felt really really heavy. I couldn’t stand without help or leaning against something. I went to the hospital and they told me it wasn’t a stroke. That I was to young to have a stroke. That my test came back normal. I had an EKG and X-Ray. They told me that the CT scan showed a spot on the back of my brain and now it shows nothing.

I had severe mood swings. I was very emotional and that is not like me. It took a month to get me into see a neurologist to get an MRI. The MRI showed that I had spots on my brain. They told me it wasn’t MS and that migraines could give me spots on my brain. I was in and out of the doctors offices those months.

Usually leaving crying because I had no answers to my questions and what I was going through. The symptoms weren’t getting any better and seemed to be getting worse. They all lasted about 3 months.

One of the times I saw the neurologist he told me that I had a Venus Angioma and I think he told me that just to shut me up. We upped and moved to Arizona because they told me the surgery I needed my insurance wouldn’t cover in the state I lived in. So we moved here because the insurance covered everything. Although once I arrived and had MRI’s done. They all came back negative for spots and I’m still having symptoms or issues. Whatever you want to call them.

I just stopped telling them what I was feeling and going through. They kept telling me it was in my head and that maybe I need to see a therapist.

I’ve went for more EKGs, ultrasound of stomach, back and hip x-ray. Since I’m having pain, stiffness and my legs hurts severely bad. Then I experience daily is unbearable and no one seems to be able to explain it to me.

Only one nurse practitioner told me that she believe I had MS and it made me cry. Although every other doctor I’ve seen has told that I can’t have MS because I’m to young. The symptoms I have are exactly what I’m reading on this forum and having daily.

I’m not sure exactly if there is a question or if I’m just wondering where I should go or what I should do next. I know I’ve started to get all my medical records from TN. I just feel like I’m at a fork in the road and I want to go back to before all this happened. I want a solution to this. I want to try and get back to a normal life. It just seems like everything is getting worse. Can anyone help me or point me in the right directions please??

[reglj]

WOW! I am so sorry you are going through all of this! I am new on this journey and have only had symptoms for 4 months so I cannot completely understand what you are going through, but make sure you stay here because there are some great people here that I'm sure can help!! I do know one thing, no matter how young you are, you are never too young to have MS according to everything I have read, which is a lot! Please don't give up on your search for an answer!

[KoKo]

Hello Blueeyedgrl

Welcome to MS World!

Sorry to learn of your struggles to find a diagnosis for the symptoms you're having. That must be both frustrating and frightening.

Only one nurse practitioner told me that she believe I had MS and it made me cry. Although every other doctor I’ve seen has told that I can’t have MS because I’m to young.

I'm not qualified to tell you that you have MS, but I can tell you that young persons can get MS. I don't know why your doctors would say that to you.

I’m not sure exactly if there is a question or if I’m just wondering where I should go or what I should do next. I know I’ve started to get all my medical records from TN. I just feel like I’m at a fork in the road and I want to go back to before all this happened. I want a solution to this. I want to try and get back to a normal life. It just seems like everything is getting worse. Can anyone help me or point me in the right directions please??

It seems to me that you need to find a doctor who will figure out what is causing your symptoms. Would you be willing to contact your local chapter of the National MS Society? They should be able to provide you with some names of MS Specialists in your area.

I don't know where you live in Arizona, but this link has information on the local offices in Arizona.

http://www.nationalmssociety.org/fin...te=AZ&zipcode=

Good luck on finding a doctor who will truly help you to get to the bottom of your symptoms. Please don't give up.

Take care,
KoKo

[rawksea76]

Hi Blue Eyes

You sound so much like me... That is the EXACT same road I have been on and apperently we started on the same EXACT intersection.

I thought I had a stroke, and yes the headache was FAR beyond any Migraine I had ever experienced.

I am sorry you are having these issues with the Drs it does seem to go with the territory.

I did a 5 day round of IV solumedrol after 4 months of symptoms going downhill and becoming immobile.

My legs still hurt daily and now I get muscle spasms so bad in my back,abs and ribs. Someone put me in a vice.

I wish I had some better advice but I have decided to take a break from tests, explaining, and all the rest.
Best of wishes and Take Care

Misery doesn't need company

Welcome to MS world and sorry you are another one having symptoms and problems just like us other ones. Just to let you know -- there are other diseases with very similar symptoms to MS and one of them is called NMO and another one is called polymyositis; another devic's disease, and many others. It distresses me to think people like you are suffering these symptoms and are coming to no helpful results with doctors or others. I myself am 64 years old and no longer intend to put up with the demening and insulting attitude of some in the medical professions. You are younger and it will be years before you get my maturity and are better able to confront authority. Nevertheless, do not fall into severe depression or other painful psychological states: try your best to find a doctor as suggested by others to you here. A doctor who does understand and believe you. I hope you don't follow my path and end up just struggling on along alone because of trauma caused by doctors being worse to bare than the illness. Meanwhile, follow all the advice on here and maybe it will help. Such things as heat avoidance; the list of medications and the diet improvements. Best of luck to you and stay on here and others will advise you too.

[Blueeyedgrl]

Thank you..

Was wondering if anyone has gran mal seizures? I've had them since I was 10.They stopped when I was 18.Then I had one 2006 of Nov. after years of none.

Some more input about your lack of diagnosis

Like I said I am 64 now and have had lots of experiences with doctors and emergency rooms over my weird MS-like symptoms. So here are some fruits of advice from my life: Be careful with doctors as they are a form of "authority figure" and if for example you scream at them (which I did once or twice)....they can do things like take your driver's license by calling DMV and telling them you are out of control, etc. So start out on your medical patient career with the knowledge that you are creating a record not only of your symptoms but of your behaviors. I wish I had thought of that.

I had things happen like the doctor overhearing what I said in the reception area. Since I didnt know they could hear me I guess I said some kind of bad things I would rather they didn't hear. In other words: remember that to get help you need to not antagonize the helpers. I'm sure you are not like me but I got so fed up with their forgetting everything about me and ignoring my symptoms, etc. that I finally got into some trouble about it. I cried and yelled at them. Then they got me into trouble by reporting this to DMV and actuating revenge on me...... they reported me as too "mental" to drive. Nothing was ever explained and thus my file went on with the same wrong entries for several more years. Whereas if I had been patient and tried harder to get the point across to them I might not have spent that winter homeless living in a van I wasn't allowed to drive anymore. After gettng a copy of my total file I discovered that in 5 years of going to that clinic they had never written down one of my symptoms and had often referred to me as delusional or hostile. They even wrote down that I was not hurt in the big car accident I was in -- which was totally untrue. So next suggestion to you: Every once in a while ask for a complete copy of your medical file and read it to make sure they are actually writing your symptoms down or recognizing the reasons you are coming into appointments. I discovered they often did not seem to even know why I had come to see them (from looking at the files).

In my case my frequent trips to emergency wards over my weird and horrifying symptoms was more fruitful towards discerning what was wrong with me than my regular doctor files. When I was younger I actually did have good doctors but in last 10 years I could not find good doctors. I also quit trying and have not seen a doctor in 3 years. I figure that as long as I can still function even with chronic optical neuritis and other chronic and changing symptoms........then why go to a doctor. I will go when I feel too sick to function. Other on here say that is bad but it works for me for now. Wow the emergency rooms must miss my frequent visits from previous years.

A young person cannot be expected to have the outlook on weird MS type symptoms that somebody like me has who has lived through about every one of them and finally leveled off at a few years of improvement. If I were still back to where I could barely move my legs, my feet were burning off and dead; no depth perception; hideous headaches; dead left thigh; total left side failure; legs that won't work; acute optical neuritis; etc. etc. etc. then I would be more upset and the same as I was for years: desperate and confused and oppressed. I felt horrible today because the sunlight was just blinding and hurting me and the blotchy vision..........but I lived through another day without hitting the emergency ward.
Oddly enough in my huge stack of medical/dental files; it was the dentists who wrote down my MS type symptoms. It was a dental assistant that told me about the mercury tatooing below my left (blindest) eye and how that could effect vision and it was a dental assistant that told me what my Bell's palsy was from my complaints to him.

Doctors like to look back to last prior doctor to them and get your old files and old doctor's opinion. Sometimes they are afraid to disagree with your old doctor and this influences your diagnosis or lack thereof. Once in a while you might try to trick them and not tell them about your previous doctor to see what they come up with on their own. I think what you are running into is that they may wait and observe your symptoms to see if they go away on their own.....part of medical observation takes time so maybe that is why they haven't just jumped on your diagnosis. One neuro said to me "The State of California does not want to pay to find out what is wrong with you (I had California MEDICAL insurance). or "It is not worth the State's money to find out what is wrong with you". The inference here is that you are not sick enough or important enough to invest a large sum of money in your diagnosis. That is not good and would upset anybody not just you or me. However others also know there is really no quick cure for all of MS symptoms for ANYBODY.

We may never be able to communicate to them how bad we feel from MS symptoms. I myself cannot even find words to describe for example the symptom I have of when I turn my neck a certain way I "hear" my neck bones making a hollow sinus electrical buzz feeling. Now what the heck does that mean??? But it is this weird feeling. Also the MS "hug". I think I have that and it is unbelievable. My abdomen just starts to stick out like a hard board and I feel hugged from around outside. It is almost worse not to have a MS diagnosis cause then you aren't in a group of peers who have same problem. You are a limbo lander and that sounds icky to me so I don't go there.

Just thought I would try to impart some wisdom to you of dealing with the non diagnosis thing. And I am wondering: have you improved any since this all happened to you. Are you okay now. ON Queen in Oregon bye bye.