does anyone have similar symptoms?

[pharmgal13]

I'm 19 years old, and have within the last year been sent to Neurologists and MS specialists.  Last summer I started to have headaches everyday that never seemed to go away.  I went to a neurologist who did an EEG and a couple MRIs.  I was told that I had lesions on my brain in the area consistent with MS patients and that the Neurologists wanted me to see an MS specialist.  At that time I didn't really have any other symptoms of MS, I had had some numbness in my hands, but it was thought that it was a side effect of one of my migraine medications. The specialist didn't think I had MS but recommended I get another MRI in a year to be sure. So this summer I had a couple more MRIs and once again have been referred to the MS specialist.  They say they don't see "much change" in the MRI but want to set up an appointment to do more tests and to re-check me for the possiblility of MS.  In the last year I have had one case where my right hand was shaky and would not stop shaking for about 30 minutes. I still have headaches, but not everyday, I probably average 1 headache per week.  I have noticed that I am extremely sensitive to heat.  There have been about 3 instances in the last 2 years where I have passed out from the heat and many times when I was close to passing out.  And lately I've had trouble with my eyes, they've been extra sensitive to light at times, I even woke up one day and was unable to open my eyes and when I finally could open them, I had to wear sunglasses in any sort of lighted area.  Are these symptoms consistent with MS?  I'm so tired of the doctors just passing me around and not really ever giving me a definite diagnosis.  Does anyone else have symptoms like these that have already been diagnosed?  I really appreciate any advice/ help.  This all came as a complete surprise to me last summer when it all started!  

[Barb331]

I too had migraines for years. Finally after a bout with optic neuritis and loss of hearing my dr. sent me for an mri, and sent me to a neurologist who diagnosed me with ms. I was put on copaxone for 10 yrs. and am now on a new drug tysabri a once a month infusion. I no longer have migraines, in fact as soon as I started the ms therapy, they went away. However before then I was on Maxalt and that stopped them. Ask your dr. to have you try Maxalt. And don't give up. If you are dx. with ms be sure to get on some kind of therapy. I have been dx. since '97 and my progression has gotten worse but not as bad as if I wasn't on any therapy. Also try to find a support group to go to. They have been a godsend to me. Good luck to you all.
Barb from NW Ind

[JemmAus]

I know how you feel. I'm still on the fence regarding diagnosis, but have suffered from awful migraines UNTIL I (in my obstinate refusal to take prescription drugs) started taking high doses of magnesium. It has to be a magnesium supliment ending in "ate" (I have amino acid chelate).

I was skeptical but willing to give it a shot. Obviously it doesn't do any harm and isn't addictive. The result (I take 4 a day and up it to six if I feel a migraine coming on) is that I have not had a severe migraine since May. The ones I get now are relatively minor, no nausea or vomiting, and I'm able to go about my day more or less, instead of dying in bed for 24 hours and only getting up to vomit.

Give it a shot for the migraines......there's lots of info if you google.

[hubba617]

hi, i was diagnosed with MS almost a year ago this month. it was a long awaited answer. i developed optic neuritis in dec 97' and that seems to be a big red flashing light for/with MS and when the did the MRI at that time there were i belive 2 lesions. at that time they were going on seeing more lesions to give a dx of MS so they sent me for heavy duty steroids IV and eventually over the next 2 years or so i regained some of the vision in my right eye. well......between then and last year i had several other symptoms w/tingling, numbness, tremors, twitches, constant reoccuring UTI's and so on......and a handful of things that may or may not have been linked. so for 10 years doctors were passing me off and around.

10 years later symptoms progressed and i got another MRI and voi'la the diagnosis, and medications..and with that....hope that things will eventually get a bit better.

DONT STOP!!! whether MS or something else, you NEED to find that one doctor that is going to do his/her damnest to help you. that is their job right? i think some of them have forgotten that part.

i have recently been suffering from migranes and at my last visit w/my neuro he said that for kicks he wants me to stop caffiene for a month. i dont take in much at all but its not like a set diet coke and set time, and he said that sometimes a certain type of migrane can be caused by even the tinyest bout of caffiene withdrawl. so if you have one one day and not the next your body is like....uhhh hello!!! we're waiting for that little bit please!!!

sooooooo im still having some pretty deep headaches and one migrane. we might try some form of med for them after this is if it doesnt change.

as for MS is it really is a tricky disease as no 2 people have it the same way.

please let us know how things are going. and you can contact me if you would like. best wishes

[bearsmum]

Hi, how are you going these days.  Have you received any answers from the specialists yet?  I know exactly what you are going through, I too have been looking for answers for the past 4 years, but looking back, I have slowly been getting symptoms relating to MS for the last 8 years.  My appt to see the MS specialist is on the 4th December, so hopefully I will finally get some answers.
Regarding your migraines, I too had them frequently and really bad.  My dr put me on Tramal, which is a pain killer and it works a treat.  The only problem with Tramal, it is very addictive and extremely hard to wean off them.  I have tried but to no avail.  I am on 2 a day and rarely get migraines these days.  My doctor wants me to stay on them seeing that they are doing the trick for my migraines.
Hope this helps you and good luck
Cheers
bearsmum

[pharmgal13]

Thanks Penny!!  How do you deal with the migraines.  My doc. did have me on topamax for the migraines, but I had bad side effects from the meds.  Regular tylenol just doesn't seem to cut it though!  Have you found any great migraine cure by chance?

[pis4penny526]

hello there my name is penny, And I suffer from major migraines  I have already have had them 5 days out of a week  I know they are terrible. At first I thought it was n't part of the M.S. but then my   doc says it is, but i wish you good luck. I was passed  dr. to dr. as well. dont ever give up. untill you feel you got the answer you want! or need or feel comfortable  with! God Bless you and your family
                    Penny

[pharmgal13]

Thanks!  I haven't been diagnosed yet.  They keep saying that the MRIs are abnormal and the EEG was abnormal, but delay diagnosing me.  I go back to the specialist next Thursday so hopefully I'll know more then.

[sllowe]

Hey Gal,

Well, I'm suspecting that clinically you didn't fit the definition of MS or you may have very well been diagnosed.

I'm glad you found us.  You will get support and learn so much here.  Please, while you wait for comments, check out our health pages located toward the top right hand corner.  There you will find the diagnosising criteria, along with a whole lot of other information put together.  

Look forward to getting to know you better soon....
-Shelly