20 year old possible MS diagnosis

[stephlovespeter_xo]

My doctors and I are currently in a little bit of a rough place right now trying to figure out what is wrong with me. I have been dealing with coincidence after coincidence for a few years now. At the age of 13, I was diagnosed was Epilepsy. I only had 8 grand-maul seizures before I was put on Anti-epileptic medication and have been seizure free ever since. Now, I am 20 years old. Just last year, my doctors noticed that my blood pressure and my heart rate were high especially for my age. I am currently on 100mg of blood pressure medication and it is still not bringing down my blood pressure or my heart rate. For about 6 months now, I have been experiencing tingling in my feet.. something that we thought was a low B12. Now, however.. I have experienced pins and needles all throughout my arms, my face, and my legs. I will get pins and needles in my hand while I'm brushing my teeth, or while I'm sitting down. I get really bad leg twitches at night sometimes as well, a long with finger and forearm muscle twitches as well. I have only had this happen 3 times, and only while I am sitting down but I have had my eye twitch.. it looks like the tv is moving back and forth. Not the eyelid, the actual eye. Like I said though, that has only had 3 times. I have really bad weakness in my arms.. and have been really tired the last 2 weeks. My doctors have focused on testing me for Lupus and RA, should I be asking for a Lumbar Puncture or an MRI to check for MS? I also have trouble with simple words... I will forget words like garage, laptop, camera.. words that I should just not forget.

Please help me!! Your input would be greatly appreciated.

[Lulu54]

hi guys,
I just want to point out that this post is from april .... we haven't seen this person around here for a long time.

Lulu

[scaredguy309]

Well am 22 and i have a whole list of ms symptoms but no diagnosis as yet. The list includes twitching. It started only in my eye lid for a couple months and then occured mainly aroung my fingers and then all over my body when i had a flairup of symptoms. But for whatever odd reason, i haven't yet any issues with numbness or tingling like most other ms'ers. But then again, there's no clear set of symptoms that people get all the time with ms. Just wana tell u that the road to diagnosis may not be easy especially when u have other conditions. i for example have anxiety disorder and my neuro says he is completely convinced that i don't have ms and i'd be wasting my money on an mri....You'd be tempted to believe him except when u see my list of symptoms, its just amazing what he labled as anxiety related. example...slowed and weaked pupilary response to light confirmed by an opthalmologist, bradicardia,heat fatigue, short term memory problems at times and like you i sometimes can't remember words...so even when the docs are dismissive, if u believe and no something is wrong, don't give up. Get new docs

[borntolose102]

As normal i have no idea what to say except I will be thinking of you. In all honesty it would be great if it were MS because at least you would have an answer. Keep your spirits up and try your hardest on not focusing on what may be happening with your body. I always said I felt like God's lab rat, because if there was something I would get it. Looks like you took my throne. :)...best to you and keep up the good fight..

[Ufrustrated2]

Considering the interpretation prowess of some neuro’s or lack there of, I would push and fight for as much data on your health issues as you can possibly get.

Just read the horror stories and level of frustration most on this forum have been through in regards to a diagnosis and the general medical run-a-around. Not all mind you, but a majority I suspect. And many of these people had a mountain of susportive data.

And this is a small forum. What of the millions of other patients with similar med issues?

I believe it is standard operating procedure to test for Lupus and RA first. Rule them out, if that is the case, then perform a MRI. For some neuro’s those results then may warrant a LP. Just my experience.

Hang in there

[PastorDan]

If you convince your PCP to order an MRI, there are specifics that shouldd be included if one is looking for MS.  Hopefully one of these fine folks can point you to that info on this site.  Be sure the machine is at least a 1.5 Tesla strength.  There are several series (T1, T2, FLAIR, w/wo contrast, etc.) that are supposed to be performed, too.  Sorry my brain's not pulling it's own weight tonight.

Regardless, all of you young ladies will be in our prayers.

[stephlovespeter_xo]

Hmm, really? Interesting! I will definitely look that up. I'm trying to research all avenues right now.. I don't want any stone left unturned. Thank you so much for your information, it is greatly appreciated!

[stephlovespeter_xo]

Yeah, they have already done a slew of tests involving my thyroid and autoimmune diseases involving my joints. At first, that's what they thought they were looking for because I have really bad joint pain but we now think it's because of the birth control - apparently I am allergic to it so I had to go off of it. I was tested for both Lupus and RA.

I am definitely going to take everyone's advice on here and opt for the MRI and if that shows nothing then maybe do the lumbar puncture. I have booked an appointment with an optometrist for tomorrow morning. I figure that with the eye jerking that I had, he might be able to see something. Apparently sometimes they can see MS when they look in the eyes because of the inflammation around the eyes. No, I have not done either yet. I have a doctors appointment on Thursday where I will ask for a req.

It's so strange how we all have these strangely similar symptoms. I didn't even know I had high blood pressure until I had a cardiac crisis at the dentist. I went to go get a filling done, and they injected me with the freezing element and it threw my heart into shock. My blood pressure was 232/170 and I went unconscious.. I had no idea until that day that I was even suffering from high blood pressure. Since then, they have not been able to keep it down to a normal level. Hm, that's interesting. I have an appointment with my neurologist next month so I will definitely ask him about that.

Thank you, you as well & please stay in touch!

[stephlovespeter_xo]

The loss of speech has been a pretty big sign that something was definitely not right. At first I put it down to not getting out enough. I was just recently diagnosed with Bipolar (which I don't think I have), I definitely think I have bipolar tendencies (which is oddly enough, another sign/symptoms of MS). At the time, when it first started happening, I just put it down to not getting out of the house enough. However, now I've realized that is not the case. I have an actual inability to remember simple words.. words that I use all the time. Today, I went to go buy my best friend a present and I forgot the word necklace. As a girly-girl who dolls up a lot, there is no way I would just forget that word because I don't get out enough. Some days I'm not so bad, it fluctuates throughout the day but then there are some days like yesterday where I was in bed all day. The twitching is mostly confined to my right fingers/hand and forearm, along with my right calf (just forgot that word), and toes.. my toes involuntarily move the most and I get involuntary movements at night with my leg not a lot but it happens.. almost like I'm kicking someone.

It is more of a tingling pins and needles.. if you had little firework sparklers on your hands, that's what it would feel like. I definitely get burning in my forearm, and my feet have really bad circulation - they are ALWAYS cold.

I definitely do not want to do a lumbar puncture if I don't have to - I have been through enough pain these last 4 years, I don't need anymore if I don't have to. I have booked an appointment with my GP for Thursday where I'll get some blood work back and an ECG so I'm going to ask her to send me for an MRI as soon as possible.

Thank you so much for everything & please stay in touch!

[stephlovespeter_xo]

Thank you all for posting, it means a lot. Trying to figure all of this out is a very scary process.. I'm just happy that I have a website like medhelp to help me along the way. Thank you all so much. If you ever want to talk, or share information.. just message me! It is very much appreciated..

[sllowe]

Hi there,

Welcome. You've gotten such good info I just wanted to add a little. I did a little research in the past for a friend ref. BP meds and blood thinners and cognitive issues. I'm sorry I can't point you to the exact source right now, but it's out there if you look into it and google it. Basically, they can both cause memory loss, confusion, etc.

I'm sorry for what you are going through and I hope your Drs are very thorough in their search into this.

Thanks for joining us!

[CheeserNurse]

I'm very encouraged to see that you are both near my age and are experiencing these symptoms, as well. I'm 22 years old and are stories seem similar. I've had the MRI's done, showed lesions and demyelination, just have to find a better neuro!  I'd love to talk to you both in more detail about your symptoms and your journey towards hopefully getting a diagnosis someday, or at least figuring out why these symptoms are going on for the 3 of us. Please keep in touch!

~Aleah

[Sunnytoday]

hi there! It sounds like your doctor's are going to do some testing for autoimmue disease that have joint involvement. While a lumbar puncture does help rule in MS, it is painful and is usually a good option AFTER a MRI is done. Have you had this done yet?

Your symptoms are actually similar to mine- so know that you aren't alone. However- I'm not diagnosed yet, and i'm being currently tested for a metabolic disease and have been going through extensive testing for a year. I too have the BP and heart rate problems which led them to think I had a autonomic problem but that hasn't been proved. I'm also on seizure medication and have been told that the pins and needles and cognitive problems can be a very real side effect of the mg's that I'm on for seizure control. I haven't had a full blown siezure since last fall.

Hang in there and know that we are here to support you and answer any questions you may have.
~Sunnytoday~

[jensequitur]

Loss of language is always a big warning sign for me.  I first started having problems with speech early on, before I even knew there was a problem.  The weakness and fatigue are also indicative of MS.  Twitching is one of those on-the-fence symptoms - is it confined to one muscle, or several?

Typically pins and needles aren't a symptom of MS.  I've experienced the gamut of paresthesia, including numbness, tingling, buzzing, burning, and pinprick pain, but the pins and needles sensation always comes with a loss and return of circulation to the area.  My paresthesia are in certain areas, and aren't in both arms at once, for example.

I think an MRI would be a good idea at this point.  A lumbar puncture is literally a pain, and with your clinical history of symptoms, you may be able to avoid it.