Scared

[foggy1957]

Hello,
I am new to this site and today I just feel terrified.  In 2003, I developed some MS symptoms(tingling in my extremities, sense of  incoordination in my hands, extremity pain)  My MRI at that time was "suggestive" of MS however my neurological exam, nerve conduction test and reflexes were all normal.  My Neurologist felt that I most likely did not have a neurological disease and said if I wanted I could repeat my MRI in six months. He felt my symptoms were related to stress (grandfather had just died, I was completing my graduate degree and preparing for my national NP boards) My symptoms resolved and I have been fine until a few weeks ago.

It began with two mornings in a row feeling an abnormal feeling in my feet up to my knees.  This last about an hour and then resolved.  About a week later, it came back accompanied by muscle aches and a sense of muscle weakness in my arms and legs.  I have all my strength but my extremities feel weak.  This morning I woke up and it felt like someone was taking a needle and poking me  every 10-15 seconds randomly on my body.  Also having a sense of feeling "off" in my head.  I hate to call it lightheadedness but I don;t know how to quite describe it.  

I have made an appointment with a neurologist but needless to say I am terrified this is MS.  Being in the medical field, of course I see the worst and all I can imagine is a progressive debilitating disease and it is really scaring me.  I realize I need to calm down as this does not help.  I know I need to wait for my workup but meanwhile, it seems everyday I am waking up with more symptoms.  Guess I just needed to vent.
Katerina

[LisaJF]

Im so sorry you're feeling bad.  Boy do we all know that crappy feeling of pain. I too, get intermittent bone and muscle pain in my mid back where the kidneys are located, hips and legs.  They feel like they are on fire.  It's so painful that sometimes I tell myself, if this doesn't dissipate after so many hours, go to the ER.  But I stick it out (only because my experiences in the ED are so bad that I rather suck it up at home taking motrin and neurontin.

Im wondering what your B12 level was? I know that sometimes with uvula, tongue, soft palate tingling can be associated with B12 deficiency.  However, the facial numbness...hmmmmm...

I can truly empathize with the fatigue.  I had it for two years now. I did go on a nice vacation (still had it but it wasnt that bad) from the fatigue, but its now back again for this month.  It's unreal. You feel like someone had given  you anesthesia.  You sleep for 11 hours and wake up feeling like an anesthesiologist gave you diprivan. LOL.

Xanax..huh?  Nice.  Shows the compassion of this PCP.  Although benzos do help with muscle spasms/tightness :D  I do admit that.  Baclofen did not work for me.  But when I took Valium given to me by the ER as a  prescription, boy did it save me from pain on numerous occasions.

I can't wait for you to go to the Neuro.  When are you going again?  This seems like forever when you're waiting to get seen, get some tests done pertinent to your situation and then waiting for the results!

Hugs to you and I'm so sorry!

Lisa

[connieet]

just got diagnosed this week and I had already figured it out from the internet.  Im 55 so they werent sure at first that I didn't have vascular problems since I had 5 lesions on my MRI...but my spinal tap showed an inconsistancy with my blood test.  I  also have lots of symptoms but they are symptoms I can live with...tingling mouth,face,tongue, sunburned feeling limbs that tingle and cold water feeling in my hands and feet.  I started out with dizzy spells and physical imbalance and then it went away for a few months then came back that is when they found that I went from one lesion to five in five months. I am suppose to start on copaxone soon but I hear it is no walk in the park.  I was relieved to get the diagnosis so  I didn't have to keep  getting tests done and getting the run around. It took 8 months to diagnose.

[foggy1957]

Wow, I am really feeling bad. The muscles in my legs and arms feel like they are under attack.  The pain sometimes is so so bad and my extremities feel so weak.  My joints hurt and my feet and hands tingle.  Sometimes the tip of my tongue tingles and I have now developed transient symptoms of numbness on my face.  One minute it is on the right side and then the left.  What is odd, is I have these symptoms daily for the last few weeks and they will last for hours and hours then all the sudden they let up and I feel somewhat normal again.  The fatigue is unreal.   I had all kinds of blood work done an so far nothing has come back abnormal except an elevated sed rate of 33 which is not that high.  I finally caved and called my PCP,, she was not in so her partner saw me.  What an idiot, after I told him what was going on he handed me an RX for Xanax.  REALLY????.  I am looking forward to my appointment with the neurologist in 2 weeks.  Hopefully he can figure out what this is

[Guitar_grrrl]

Welcome, foggy!

I'm in the medical field, too (echocardiographer), and I have MS.  Was diagnosed 3 years ago, but my neuro and I agree I've had it since I was a teenager.  I have good days, and bad days, and I just try to relax between patients.  My work is quite physical, and if I've scanned a large or otherwise difficult patient, my tremors go nuts for a while.  I use this time to do paperwork.

Don't be terrified, be strong!

And make sure to have fun, too!

[foggy1957]

Thanks for you input Lisa

[LisaJF]

As you know, MS is different for everyone, depending on what type you have.  So fear of you having MS is quite moot. Nothing you can do about it if you DO have it save for consistent Neuro visits, taking whatever medication they prescribe for you (copaxone, neurontin, baclofen, etc)

Some people have MS all their life, die at 96 (nice ripe old age), and have an autopsy done only to discover they had MS.  Some people get symptoms that progresses limiting physical and cognitive ability that it interferes with their daily living, job, family life and needs physical aids to get around (from wheelchair to crutches to canes or walkers).

So this fear that you're starting to build up in yourself is unfortunately useless. Take one day at a time, that's all you can do.

Use simple terms when describing your  symptoms with your neurologist. Try not to use medical jargon.  I know its hard, because I too, am a health care professional (not practicing right now).  I used every term there was in the medical dictionary.  Not because I wanted to impress, it was just the jargon I was used to and my understanding of MS because of this forum and everyone here made know what I know today. (Well some I read about myself and knew a few basic things).

Welcome to the forums  and just vent here if need be, discuss, worry, share concerns whenever you need it.  We are here.

Lisa

[Lulu54]

foggy, just let me add my welcome and hope that you will stick around here and spend some time with us as you wait the next steps.  This is a diverse but great group of people with different experiences - someone here  can always identify with the journey you are on.  I hope we see you around.

be well,
Lulu

[foggy1957]

May God bless you Alex.  Thanks for sharing your story.  

[HVAC]

Fear is the biggest problem. Not everyone with MS gets every symptom of MS. It is almost a different disease in each person. I used to worry I was going to get every symptoms. The diagnosis and not knowing was the scariest part for me. Then I waited for the other shoe to drop. I have had MS 47 years and I am still doing okay. I grew up with MS and no one figured out what it was. When I had a name I thought it would take off but it is just slowly progressing.

Now I have a bad Cancer as well as the MS. I could let the fear take over but I am facing it and living my life. The first chemo was bad because I did not know what to expect. The second I am just as sick but I am up doing things because it is not so scary. I have to used distraction to deal with fear. I also have a sense of humor.

I used to get myself so worked up I would be nuts. Now I am facing really grim odds but I am happy today. I have one cancer which the odds are not good at beating 5 years but I am not odds. I have primary progressive MS which I could do anything to me at any time. I also have the BRAC1 mutation and 90% chance of breast cancer if I beat the other stage IIIc Cancer.

I can be sacred or get up every day and concentrate on what I can do that day. I choose to ride horses, walk my service dogs, read, spend times with family and friends, pet my cats, paint pretty pictures or watch T.V.

Alex

[foggy1957]

Thanks.  There is some truth in what you have said.  Being a medical provider, I often see "know it alls".  Sometimes they are correct in what they bring to the table, other times, they are not.  Your right, I need to step back and be a patient and not the provider.  It is difficult since I a usually on the other side of the fence diagnosing and treating.

[foggy1957]

Thanks for your words of encouragement.  Two years??? , wow!!!  

[foggy1957]

Not till the end of the month.  Thanks for your kind words

[LisaJF]

Welcome to the forums.

I'm sorry you've been going through a lot of physical symptoms and the not knowing why is probably increasing your anxiety.  

A tip from me is that I think your better off stating to a Dr that you're having neurological symptoms and not "MS symptoms".  This way, you wont come across as a self-diagnosing person and raise their eyebrows questioning if you're experiencing a somatoform/psychogenic disorder.

Being in the medical field can hinder diagnosis (sometimes).  Don't come across as knowing it all (even if you know a lot).  Use terms that are not medical and if you haven't disclosed what you do for a living, should keep it to yourself during this visit with the Neurologist.  Somehow its a competition and to prove the patient wrong, they will say the opposite of your concerns.

I dont mean to tell you what to do, I'm just suggesting that when you go, you dont let the Neuro know you are afraid it is MS or call your symptoms MS symptoms.  Let him/her decide that and you will know by the diagnostic and laboratory tests he orders what path he will be taking.

Good luck and keep us informed of how everything is.

Lisa

[Dagun]

Hi Katerina, welcome to this forum. I am not diagnosed but I have been having more and more symptoms for two years now, it often takes such a long time to get answers so prepare your self for that. Of course it often also takes much shorter time. There are so many mimics of MS that the Neuros have to rule out first, this can really be so many other things. I also started with tingling and now I have much more symptoms.

Try not to worry to much, I know that it is very hard because we tend to think the worst. That could also affect things and the neuros tend to tell people it is anxiety if they see that we are to scared. There are many helpful, wonderful people on this forum so hang around to get their opinions.

My best,
Dagun

[jessilynn31]

Hello Katerina, I am Jessi. I was recently diagnosed in May and I understand the scared. How soon do you get to see your Nero?