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kiwi girl 01-14-2007 02:26 PM

Re: What Were First Symptons...
Hi. I have to say that some of us here have suffered for 20yrs without knowing what is wrong.

Your life is not yr own know matter who hard you try. YOU bet i want a diagnose. I am at the point now where each day is a living hell for me, i can't hardly move, i have been given a crutch by a neuro physio because of her concern for me with my balance and my walking, i can't hardly lift a cup on alot of days now, i drop things, i chock, the spasms are so cruel i don't know what to do with myself the list goes on.
My life consists of being awake most of the night because of pain, then trying to do just basic stuff around the house, if i try to vacum that's it for me to the day.
I deserve to have a diagnose and so does everyone one else. i do want that peace of mind of knowing what it is, will it make my life any better, i have know idea until i am giving the chance to try some of the meds that are avaliable.
For anyone that has to suffer these cruel symptom having a diagnose helps them get on with the next stage in there life.
Good luck and bes wishes to you all:D

lgr014 01-14-2007 09:16 PM

Re: What Were First Symptons...
I was just reading through old posts and I wondered if you ever were diagnosed?


Hi Kim,

I have not been diagnosed yet. My dr says my MRI was good so I had decided to just take things as they come as the symptoms seem to have subsided for the most part for now. I did decide, however, to get a copy of my mri report. It says things that I do not understand ...and sounds to me like something was found but not "significant" just taking it day by day.

Thanks for asking!


tiredbunni 01-19-2007 11:16 PM

Re: What Were First Symptons...
Hi All,

What were my first symptoms. I guess it depends on when the MS really started. I was hurt really bad by a chiropractor. He hurt my neck that I ended up in the ER with severe cervical sprain and occipital neuralgia. He knocked my jaw out of alignment. That started me on a downhill slide in 1991. By 1992 I was diagnosed with Fibro. Six months later with severe TMJ. Lost of balance was my first symptom. I would flunk the Romberg Test. I fell over under 5 seconds. I was disabled in summer of 1993. In 1994, I was given a diagnosis of Chronic Fatigue Syndrome. I had almost the whole list of symptoms check. I was in the hospital 4 times with dehydration because of gastroparesis in two years. I have been in the hospital 7 times over all. I had been to see psychologist at least 5 times.

But eight years ago I started to have bowel incontinence (not diarrhea). It was just every so often. Now it is daily many times a day because I choose to eat good diet. I also had anemia. I had a hysterectomy in 2001 that took care of that problem. I noticed after that my feet were burning at night and waking me up. Went on for a few months. I had sleep studies done. They said I didn't sleep well at night. Like I didn't already know that. I was sleeping at the drop of a hat. Narcolepsy was dx without me knowing about it. It was on my paper to my long term insurance co. It must have been mild.

Seven years ago started having double vision. Never said anything to my doctor. I had two years were things were slow. I spent with my sister has she was dying with lung cancer. She was a non-smoker and went to Heaven 3/29/05. Last year first part of it, I know things changed. I was very fatigue. I had thyroid check. I had nodules. I had biopsies. I have a goiter. I was running between doctors. I had my feet burning again in the summer. I had were I didn't recognize my son. That blank look. I had MRI done again. Walking EEG came back inconclusive. I was suppose to take another one. They were looking for stroke or whatever. He didn't think I had MS. I told my doctor of the double vision and loss of vision happened in July. He setup for evoked potentials. I was abnormal in eyes and legs. He setup for LP. It came back clear. He check my eyes again and legs. Asked if I had a weakness in legs in 6 months. I did. I was ask about my Medicare insurance if I had part B. They sent to the nurse to get setup for Avonex and SoluMedrol 3 days. I had a definite dx for MS within two months. I have possibly secondary osteoporosis to hyperparathyroid. Waiting on blood test. I just had full blown relapse this week during treatment on SoluMedrol.

I still have the symptoms of FMS/CFS/TMJ and now MS. But I will enjoy my life to the fullest. I understand how you feel being undiagnosed. They kept on telling me it was in my head for a couple of years. When working my boss either thought I had something terminal or it was all in my head. My children kept calling me lazy. My family didnít understand. Every time in the hospital I would have to see a shrink. I had to fight for everything test. I was relieved when I got my CFS dx. I would have never suspected MS. Don't give up on finding out what is wrong with you.

Bunni 53 years in SC
dx 12/06 MS
Avonex (soon)

irisheyes39 01-22-2007 08:58 PM

Re: What Were First Symptons...
Hi my name is Lisa too and I have RRMS. i have been a browser here for a while and decided to respond to this. I was diagnosed very fast for an MS patient. IN Feb 2001 i began a migraine that lasted for a month. I had dizzy spells that culminated in a dizzy spell where I felt I could not keep my eyes focuses. That sent me to get an MRI where several lesions were seen. Then evoked potentials showed past optic neuritis. At that point in May of 01 my neuro diagnosed me flat out with MS. The only test I did not have was the spinal and the neuro said it would not change his opinon one way or the other, i still had MS

Since that time I took interfereon for about a year and went off it because of the symptoms. I am doing fairly well without the shots but may go back on them eventually. I have alot of bad headaches and horrible vision. I have days when my muscles will twitch involuntarily over broad areas of my body. Like begin in my arms and then back, then butt, then legs. Sometimes it looks like snakes are crawling under the skin of my legs and you can actually see the muscles jerking. I also am fatigued very easily and I too have the episodes of losing what I want to say sometimes as I am saying it. In these times I have found that I can WRITE things better than I can communicate them.

In all of this I have found strength in my family and God. I ended up going back to college at the age of 35 and will get a Master's this spring. I was awarded disability, after a fight, and I intend on getting a PHD so I can teach college as long as I am able. THis is not a death sentence it is merely an obstacle to overcome. In many ways it has been a blessing because it has allowed me to cherish life in ways I did not do before and allowed me to do what I should have done with my life in the first place. Don't let anyone tell you the things you CAN'T do, only think about what you CAN do.


irisheyes39 01-22-2007 09:02 PM

Re: What Were First Symptons...
forgot to say that in times of stress my symptoms of MS are 10 times worse and I am usually down for the count and have to rebuild my strenght.

lilguy56 02-17-2007 01:43 PM

Re: What Were First Symptons...
I started to walking funny, and dropping things,then I got real sick . I wanted to die, my head hurt so bad I felt like my body was disintergrating from inside out. my doctor began to treat me like I was crazy. I had problems eating, I had problems with my bowels, I just could not go,or if I did I still felt like I need to. I had flu like symptons, I just felt horrible. My family thought I was just being lazy, that I just needed to get out of the bed and I would be alright. My sister came over and had a long talk to me about this. I was so confused. I ended up in the hospital with very low potassium, Because I was taking anything I could so I could use to the bathroom,I was told this had caused the low potassium. The doctor there treated me like I was crazy. I stopped taking laxitives. 3 mts later I was again in hospital for low potassium,by now I have areputation for being nuts and taking laxitives, when I say I haven't taken any I am not believed. I was sent to have an mri after I started reading and suspected ms, but, they said the white matter was consistant with age and my doctor said I didnt have ms . I was finally sent to neurologist who said I had preriphical neuropathy in my hands and feet, I had experienced numbness in both. Numbness in my feet for about 9 yrs.They would get so cold, I would pile on blankets and then go to sleep before I got any kind of relief. The neuro proscribed neuroitin, finally I got some relief. I was able to eat again and the numbness wasnt as bad. I went to another clinic and was told I didnt have preriphial neuropathy. My doctor threw his hands up and called my pychiatrist and told him I had a thought disorder. I changed doctors, I was sent to another neurologis( whom I had previously seen). The frist time he didnt find any problems, the second he wanted me to be seen by a neuro connected to hospital because of possible ms. I am sorry this is so long but I need to vent.Neurologist in oakland stopped seeing medi-cal patients because of low pay. Nothing wa being done so I changed doctors again,after 2 yrs I saw neuro who wanted me to have another mri. Bythe time I had one , he was no longer seeing medi-cal patients. I ended up in hospital again with lp and was told stop taking laxitives, no matter how many times I said I didnt take them and was afraid to take them. I was given mri in hospital and was told they didn't think I had ms. After I got out my doctor sent me to have another mri and he told me it looked like ms. I was glad to get dixng. I am still waiting to see neuro.Before any of this, I was working and was in car accident and began to experience health problems and was let go on my job,"because I didn't speak white enough" I was a telephone interviewer. Because of my health I never got back into the job market. Because of symptons I had then and symptons I had the last two times, I think that I have had ms for 24 yrs , that was my frist attack with fuzzy head, flu like symptons and not being able to get out of bed without help.I am frustrated but I try to enjoy life as much a possible. The thing I hate the most is the feeling of my body being all "tied up inside" Thanks for letting me vent.

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