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Could I have early MS or am I becoming a hypochondriac?

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Posted 3/25/2009 2:46 AM (GMT 0)
First off, I'd like to tell everyone on this board that I am so sorry you are struggling with your health!  This is my first time visiting the board and I thought who better to ask questions than those with personal experience?  I have had strange things going on lately and I just remembered running into a former co-worker many years back and found out she had been diagnosed with MS.  She said her first symptoms were tingling in her hands and feet.  A very quick run-down of things that I have been experiencing.  I was diagnosed with RLS last summer-which I do think I have, but it has been getting worse in a strange way.  I have started to have a lot of unexplainable leg pain and now in addition to my "tingly" RLS legs all day, it has moved to my arms as well.  The thing that most concerns me is that I know have "pins and needles" in my hands and feet.  Not all the time, it comes and goes.  I have been having episodes of being totally unable to concentrate and kind of "dizzy".  It freaks me out, but doesn't last more than a couple hours at a time.  Not like it is all day long or days long.  My short term memory is TERRIBLE!  I have been laughing at myself and using being blonde as an excuse, but honestly, it is starting to worry me.  I have been bumping into things as if my balance is off also.  Not bad enough to fall or anything, more like not being able to walk between things without bumping into them when there is plenty of room, and feeling like I can't walk straight.  I haven't noticed any trouble moving my limbs or any complete numbness, just the pins and needles.  I have had some vision problems too.  No pain, but more of a unable to focus type thing and last night I was trying to read and it was like my eyes couldn't follow the line across the page, they kept "jumping" all over the place.  It was very annoying and made me nervous as I only have vision in one eye.  I did have an appointment a couple days ago with my PCP for the leg pain and pins and needles and she was going to talk to a neurologist and see if they had any ideas/tests.  She was totally honest and said she had no idea and ordered an x-ray of my leg for starters.  But, I only brought up my pain and the pins and needles.  Quite honestly, I was afraid to tell her the other symptoms that she would write me off as a nut case!  Do you think I have reason to be concerned?  I was just wondering if any of you had similar things happen early or before being diagnosed?  I pray to GOD I don't have MS, but at the same time I just want to know what is going on!  I can function, but worry that if it could be MS that it is better to do something sooner rather than later.  Is that the case or does it really not affect the course of disease if you do anything early on before symptoms get severe and more obvious?

Any insight anyone is willing to give would be appreciated.  Even if you tell me I am a nut case!   turn   Because that is what I feel like! 

Thank you!    

Posted 3/25/2009 4:17 AM (GMT 0)
Hey Kelsie,

I am sorry to hear you are not feeling well.  I am not going to tell you that you are a nut case.  You should definitely see a doctor about your symptoms.  Obviously no one here is going to diagnose you.  If your doctor does not know what tests to run, then check out this site.  This site thoroughly discusses the diagnostic process for MS.  Do read the red print carefully.  Make sure you have excellent insurance (health, life etc) BEFORE anyone puts "MS" in your file.  That includes "testing for.." or "probable". 

The only real information I can give you is......once I started having symptoms, they did not come and go.  I have near total numbness of my feet.  I have chronic vertigo.......it does not come and go.  It came and stayed.  I would think that since you have symptoms that come and go, you probably don't have MS, but then again, I am not a doctor.

http://www.mult-sclerosis.org/diagnosingms.html

Posted 3/25/2009 4:45 AM (GMT 0)
Kelsie,

You definitely need to let your doctor know about the other symptoms you are experiencing.  Even if it's not MS, it could be something else serious, or something easy your doctor can fix (hopefully that is the case). 

Everyone with MS has different symptoms and experiences, so you can't go just off of symptoms.  Sometimes symptoms are constant, but for me they do come and go.  If you can get to see a neurologist they will have a much better idea of what to look for.

As far as the RLS goes, I have neuropathy in my left leg (pins and needles, tingling), and sometimes I do get that restless leg feeling in that leg which gets worse at night.  If I only told my doctor about that symptom, I would be dx with RLS, but since my doctor knows all my symptoms and has tests to back it up, the restless leg feeling is actually attributed to my MS dx.  It's easy to get misdiagnosed when only concentrating on one symptom, something like MS requires a full picture.

P.S. I have been officially diagnosed with MS, and I still feel like a hypochondriac, so I hope that's normal. :)

Posted 3/25/2009 6:54 AM (GMT 0)
Kelsie,

I know the fear of not knowing is worse than finding out what is going on. My PCP thinks that I might possibly have MS also but right now I can't get the testing done. I wish the best for you and I pray that you don't have MS. Good luck to you!
Posted 3/25/2009 7:40 PM (GMT 0)

Kelsie.....YOU ARE NOT A NUT nono

There so many symptoms that indicate MS it is mind boggling. But the vision and tingling is something that a neurogolist should be alerted to. My first piece of advice is get your insurance in order. My second is tell your PCP everything you told us. and last but not least....set your fear aside.

I was such a mess before being diagnosed with MS that I thought I was dying slowly. I was losing vision, all sense of balance and was absolutely plagued with motion sickness. My PCP was chasing my symptoms and ordering every test known to man. (Well it seemed like it)  When I was finally diagnosed I was actually relieved! We had identified the monster.

4 years later I still have MS and am much much better for the treatment I recieve. Time was wasted trying to treat different symptoms but we were not treating the cause (MS)

MS is managable and live will still be good.

Best wishes

Posted 3/25/2009 11:03 PM (GMT 0)
Kelsie,

You are definitely not a nut. But I know how you feel. I wasted a year going around asking people what was wrong with my walking & not mentioning the other symptoms that I sometimes had for exactly the same reasons as you. Finally I went back to my GP & said that I thought it was MS. She then said it could be and sent me to a neurologist. He said he would have to do some tests (which were painful and inconclusive & I think were just to make him money. I then said I wanted a MRI & one lesion showed up. He said that I had mild MS, he could not help me and I would have my next attack within a month. Thank you very much!

I have had oodles of symptoms that come and go. Some just once or twice and some off & on for years. I do not know how it is for you but those pins and needles really hurt. I have only had them 3 times but they felt like someone was ramming a handful of needles into my feet.

Gretchen always has good advice. Follow it and, yes, I definitely it is better to do something sooner!

Good luck!
Posted 3/26/2009 12:51 AM (GMT 0)
I have not been diagnosed with ms either, but seem to be having many, many difficulties.  Some of the problems I've been having you are having as well.  I get the muddled brain feeling, the pins and needles, the memory thing, and just an all over droopy-tired-exhausted thing too.  Hopefully we'll both get answers quickly and get started feeling some sort of relief!! 

Posted 3/29/2009 2:24 AM (GMT 0)

Thanks for all your replies.  I will follow up with my dr and try to keep track of all the symptoms.  I know she mentioned vitamin deficiencies such as B12, so maybe she will order some blood tests.  I assume she is waiting to hear back from the neuro and that the x-ray was completely normal.  I wasn't expecting to figure this out right away, but when strange things are happening, it is very easy to let your mind wander and think about all the possibilities and worry about the "what if's".  After I posted here I had a couple good days with everything.  Now today, my leg has been hurting really badly, but not so much with the pins and needles or concentration difficulty.  It is pretty frustrating when even I can't explain my symptoms!  They just seem to come and go whenever they feel like it and are hard to explain.  I don't see a pattern of any type. 

I do have faith in my PCP, I have excellent insurance, am at a major medical center and have access to all the specialists.  My PCP just asked me if I wanted her to consult neuro first before sending me for a referral.  She said it would probably be faster but I still may need to be physically seen by neuro.  Perhaps neuro will think of something to go looking for.  Not that I want to "find" something, but I would be very pleased to have these strange symptoms go away!   

Posted 3/29/2009 4:51 AM (GMT 0)
Kelsie

Just wanted to say I have RLS too. Apparently more people with MS have RLS than the rest of the population. For several years my RLS got progressively worse and then after a sinus infection I started getting painful spasms down my left (weak side) leg. These got so bad that finally last year I got a baclofen pump. Since that I have relief from the pain which is bliss. The interesting thing is that they can direct the baclofen. Mine flows down the weak left side & I no longer have spasms or RSL in left leg but still have RSL in the stronger right leg. My RLS is definitely caused by allergies.

The odd & varied symptoms are a real trial & now I know if it is something wierd its MS & I just get on with my life & it often goes away.

I think it is a good idea to tackle it sooner if you can. I was not diagnosed until I was secondary progressive & then there is nothing on offer. Good luck. wink
Posted 4/7/2009 4:35 AM (GMT 0)
Hi, Fellow MSers--wow, Popsie--my heart hurts to think of a 10 yr old putting up with this JUNK!!! My symptoms "fell right" and I was diagnosed in 1973 at the age of 24 (with symptoms since having a bad case of mono as a soph in h.s..) I have had relatively slight disability since then, but daily symptoms which have stretched my tolerance to no bounds! I had MS 20 yrs before th drugs came out and since I was stable enough I chose not to go on one. Now at 60 i have had 4mos of bronchitis and the infection from it has played havoc with my weak (anyway) walking.) I mam tapering off 60 mgs oral steroids even though the bronchitis is not gone yet; I see a pulmonary doctor soon. Herfe is something I wrote for those on this thres--hope it helps you Newbies and Limbolanders. I car! Jane in Indiana

Please don't let them (the neuro) do a "head job" on you! MS is enough to do *anything* to us--but likely NOT emotional as it operates on NERVES anywhere. Maybe once in a blue moon it does stuff that can look psychological---but more often that not it just does squirrely stuff that is perverse, bizarre and obnoxious--believe me, after 36 years with it, I know. I just was very confident of what I knew I knew I knew all those days and nights and didn't go to neuros more than once or twice a year any year and just handled it myself. It really was much preferable for me since I didn't have to hear all their naysaying! I KNEW WHAT I FELT AND DID'NT WANT TO BE TOLD I FELT DIFFERENTLY! I'D BEGUN MY COURSE IN THE 70'S BEING TOLD WHAT I FELT WAS NOT POSSIBLE--WRONG!!!
Let me and others help you cope--it takes us all sometimes! Jane
Posted 4/9/2009 5:39 AM (GMT 0)
Hey Jed999,

I really admire YOU. I think it is much harder to know you have MS and continue, like you did, than not to know. I had an "attack" every 15 years but was only diagnosed when I was 45 so I had a full & happy life. Its only now, looking back on the wierd symptoms I had and recognising them as ones that I have now, that I can see the attacks for what they were. My mother also had MS but was only diagnosed in her 80's. She, poor lady, was treated as a hypochondriac until then. Although her weakness was in the arms & mine in the legs the pattern was very similar. Her attacks were bad enough for her to be hospitalised 4 times between 10 & 45 & then she (& I too) had lots of pain with "skin so sensitive I could scream" to quote the MS manual. I have read that if another family member has it they tend to have a similar pattern.

From what I read I think people today seem to have it much worse & from much younger. I really feel for them.

I have yet to find a good neuro. I wish I could go to Gretchen's as he/she seems to have both a balanced & proactive approach.

I have had emotional issues lability (crying when slightly happy or sad) & irritability. The interesting thing is both these are much improved since the baclofen pump - it really seems to have smoothed out my nervous system. I know a man with MS who watches the news with tears rolling down his cheeks so I know others have these too. I think it just depends where the lesions are.
Posted 4/9/2009 6:02 AM (GMT 0)

I do believe I am truly blessed to have the doctor I have.  She is extremely young and yet a wise old soul type.  She is the perfect blend of clinical knowledge and empathy.  She is extremely available as well.  I have an email into her as of today.  She will respond before sundown tomorrow.  No charge!! 

I was assigned this doc when I was referred to UCLA MS center by the initial diagnosing doc.  He was also very excellent.  He is a stroke specialist.  He questioned his own diagnosis and sent me on my way.  My only complaint I had with him; he had absolutely NO sense of humor!!  If you know anything about me then you know I have to be laughing as much as possible.  He NEVER ONCE laughed at my jokes!!!  So hurtful.

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