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608161 tn?1221619623

Symptoms of MS, but No Answers...

It started off with dizziness (vertigo) and off-balancement last November (going on a year).  In addition to those symptoms I have been developing more and more "tingling sensations/numbness" in my left hand left three fingers, left foot, right side of my face and neck, and right below my right shoulder blade are the most popular places this happens, I have what I call "hot flashes", I also have a lot of muscle twitching in my neck, arm, and left eye.  I do not have a family history of MS.  My mother does have rheumatoid arthritis and fibromylasia.  I have been checked for thyroid problems, anemia (full blood count), potassium, diabetes, kidney and liver function, etc.  I have had chest x-rays, numerous EKGs, heart ultrasound, renal ultrasound, CT Scan of chest with contrast (to check for pulmonary embolisms), and a 48 hour holter monitor.  The only thing they found was my gall bladder was soooo full of gall stones - they removed that March 5th, 2008.  And, that my heart is sinus tachycardia 40% of the time (usually when I'm dizzy).  

My off-balancement has gotten worse (sometimes dropping feelings) I have fallen three times, and my tingling sensations seem to be getting worse.  I had an MRI done (without contrast) and it was "unremarkable".  The ER doctor told me that ruled out MS.  And, just so you know I ended up in the ER when my right side of my face and neck went numb and was extremely dizzy.  I have an appointment with neurologist for the first time in two weeks.  I hate to even talk about my symptoms anymore because it never solves anything.  I feel like a burden to my fiance and family.  I just want to correct this, and I have been getting no answers.  Does anyone have a clue what's going on with me?  Or even any advice for my first neurologist visit?  I would appreciate it.

Kristen
13 Responses
Avatar universal
I can understand you not wanting to talk about your symptoms any more as it does no good.  I have feelings the same and even wonder sometimes if my symptoms are real!!  You arent a burdon to your family etc my partner finds it realy hard to know what to do or how tohelp.  sit and speak to them and this might help speak about your feelings with them.  I dont have any help for you seeing your neurologist as i havent seen one but i would guess to open up and tell him all you rsymptoms and how it affects your life.  Hope   all goes well
Avatar universal
Hi, I am 21 years old and my situation is almost identical to yours! Quick Medical History: I have had three reconstructive surguries on my feet and legs, I have paryoximal supra ventricular tachacardia (my heart beats faster that normal), chronic broncitis, had compressed nerve on right side of my neck due to car accident in 2004, and chronic sprains of my ankles.

Besides that I have had dizzy spells, and at some points I feel as if I might actually loose conciousness. My vision is sometimes blurry and doubled, I have these sounds in my ear that come and go as well as nerve twinges/electrical impulses throughout my body, I have muscke tightness, soreness, weakness, I am always fatigued, when I am normally the life of the party ( I actually fell asleep at my cousins b-day), I have had numbness and pins and needles in various spots, but mopst receently I woke up in the morning and the whole lower half of my body was numb. I have intense nerve pain that comes and goes, and my body is always cracking. My throat is always inflamed, and I feel as if I am loosing my train of thought all of the time. I was driving the other day and I totally forgot where I was going and what I was doing. I am actually very smart, but I feel as if lately I am a total idiot. I leave the fridge open, I lock my keys up, I can't find anything, and I make stupid comments to people. This is really unlike me.  I feel as if I am 80 yrs old!!! I am going to see my doctor on friday because I need an answer. Every time I go they give me more medication to mask my pain/symptoms, and I can't live my life in limbo anymore.I am going to demand every test known to man!!!! My fiance is also tired of hearing me, but I had to ask him that if I end up in a wheelchair will he help me? That is all I needed to know. Now I feel much better. Mo matter what I am sure that your family will be there for you, and there is no need to panic. Keep a journal of your day to day symptoms, and when you see your doctors, the diagnosis they give you, what you are eating, doing... throught the day. This will help you to piece the puzzle together. Post me back...
608161 tn?1221619623
I know my family will support me, and I know my fiance would do ANYTHING for me.  He told me no matter what we'll get though it together.  Today is a better day so far, but if it makes any sense at all nights are always the worst...my dizziness issues get worse then.  I woke up really stiff and tired, but I got better after an hour of moving around.  I will start writing down my symptoms but last time I did that and brought them to my regular doctor she laughed and me and was like, "you're only 23 for so many problems."  I say no ****.  I didn't tell her that but I thought it of course.  I completely understand about wanting to request every possible test out there to get to the bottom of things.  I wish it was that easy.  I feel like if I could just get an answer then I could understand and not be so terrified by my symptoms.  We'll see I suppose...
Avatar universal
I wish that I had a an answer for you. I have some of the same problems. I have dizzyness, also known as vertigo. There are things you can do to help with the vertigo, like certain neck exercises. Also, it can be very helpful to no lay down and sleep on your back, and if possible try sleeping sitting up, and just see how that works. Also, see and ear, nose, and throat dr. It is possible it could be your inner ear?? It may be worth a shot, if you haven't ruled that out yet. The fact that after you get up and move around your not dizzy anymore is a good thing, usually motion makes it worse. They also do have medication for vertigo, it makes you really tired, so it may benefit you. I hope some of this info helps.
Take care and best of luck, Kristy
Avatar universal
So, you did the MRI, and they said that everything was completely normal? I was researching MS and it seems as if people will have the symptoms of MS but not actually be diagnosed until later. I guess it takes a while to penetrate the mylen sheath of the brain and actually show on an MRI. (I'm totally not trying to scare you, but I don't think that you should stop looking for answers.)The last MRI that I had done was in 2004 and they determined that I had compressed nerves in my neck. It made my hand curl up and it also caused terrible pain and discomfort. I was symptom free for about two years and then I started experiencing everything again. Not until just recently about a couple of months have I had the dizzyness and fatigue. As well as the bathroom problems and numbness. After really researching every possible diagnosis the one that seems the most logical and cohesive is MS. If I do get an MRI done and it is MS the only parts that scare me is the loss of use of limbs and the speech impairment and brain function abnomality. Other than that I can deal with being tired, dizzy, and weak. :) I tried to get my fiance to stay home with me today and help me because I feel like a noodle, but he wouldn't. He said that I sould just lay down all day. I know that can't be good! What if I start laying down all the time and one day I wakeup and I can;t walk!!!! I know that I am pre-freaking, but I have this really bad feeling... By the way, my doctors think that I am a medical marvel and that I am also way too young to have sooo many issures with my health. TTYL
Avatar universal
It seems like everyone here is experiencing the same problem! As far as vertigo...it would make the room feel like it is spinning, but not you, yourself.
I have been dealing with the same issues as well. I am 32, work as a psychotherapist. I had to cut back at work from these same symptoms. It started with stomach/reflux, then dizzy spells, ringing in the ears, internal tremors if a wake up suddenly, feeling like i am in a "brain fog", forgeting names of people (not a good thing in my profession!), and suddenly began having heart arrythmias) I had been from doctor to doctor, and everything appeared normal.My doc even suspected panic attacks or acute anxiety(I think i know how anxiety would feel...and it WASNT that). I finally met a neurologist who did an eeg and discovered seizure activity in my temporal lobe. She assumes these symptoms are related to focal and complex partial seizures. Im not so sure of this, as it still seems like there are other symptoms im experiencing that arent associated. Still trying to figure things out here.
Just dont give up and go with your own instinct. Push the doctors to continue testing until THEY FIND OUT WHAT IT IS! You are your own best advocate
Jennifer
Avatar universal
Hi. Have you been tested for Rheumatoid Arthritis (RA)?  I had a lot of same symptoms as you.  When I woke up everything hurt, and was stiff, and after walking around a couple of hours the pain subsides a little.  I was tested for RA and my ANA and Rhematoid Factor showed up as low level. Went to Rhematologist and he wouldn't give me any different  Meds because he said its Low.  My pain is not Low level, my legs and arms are tingling, numb and I feel pain.  Will be looking for other Dr. Also, do you know if you have Fibromyalgia and Chronic Fatigue Syndrome because a lot of your symptoms sound like part of those diseases. Aside from RA, I also have Fibro and Chronic Fatigue. I am looking into natural alternatives. Check out Dr. Jacob Teitelbaum's article on www.effectivetreatmentsforNeuropathicPain.org Good Luck!
608161 tn?1221619623
Doctors also tried to pin me with Panic Attacks (except there was no stress factor) and I could be just sitting watching a movie or sleeping and these symptoms would happen.  I think doctors just assume that because of my age there could be nothing more wrong with me.  My fiance has mentioned seizures before because I do really bad in grocery stores (flourescent lights) and I cannot watch HD Tv (makes dizziness SOOO much worse).  The neurologist visit is a week from today.  I just want some answers.  Something is definately not right.  As I'm typing I can't feel the skin just below my right shoulder blade.  Yesterday it was that and my left temple (new spot).  Does anyone know what happens at your first neurologist visit?  I'm nervous.  I've read about really painful tests and stuff and I just want to be prepared.
608161 tn?1221619623
I've considered Fibro and RA only because my Mom has it.  But, she's always in A LOT of pain, and my pain comes and goes.  Mainly my joints in my knees and ankles, but also my hands.  And, honestly these pains are not HORRIBLE.  I do wake up stiff, but I'm not sure if that has anything to do with anything.  I'm not ruling anything out, but I just want to be done with this ****** feeling.  Monday was really really bad.  The rest of the week not as much.  I've been trying to stay busy to keep my mind off of my problems.  It seems to help a little.  I wish you the best of luck finding a different doctor that will help.  That is a hard situation.  I'm hoping my neurologist will be understanding and helpful...that's all I can hope for.
Avatar universal
Hi Kristin, I'm also 23 and am experiencing many MS related symptoms for over a year now. I've also had an MRI of the brain enhanced which was normal plus bloodwork and xrays normal. I've also been told perhaps its stress or anxiety although I can get these attacks while I'm relaxed or even complete dizzy spells from being at the movie theatre and stores etc. Keep doing what your doing! You're on the right track! If possibe, research the neurologists in your area. Some may specialize in specific areas such as MS. I have an appointment in about a week with a new neurologist who specializes in this, thats why I advise it. I spent time and money with others to be diagnosed with epilepsy and put on meds then told by the other I do not and given an antidepressant which I have already tried for a possible chemical imbalance in the past(didnt work). My left eyelid even sags with loss/blurry vision during attacks too which neither one seemed to care about. It can get confusing and stressful and you may not get answers at your first visit, although I hope you do! I didn't, but I refuse to settle or give up. It can be scary when you have no answers. I was'nt scared before until I had a sudden onset of sever nerve pain on right side and when the whole right side of my body went numb, I also went to the ER. This part has been the worst and still no one has told me why or what or given me anything to ease it! I didn't know what was going on and now its less severe(worse at night) but still ongoing daily.

Although I don't have an answer yet for myself, I just can really relate to your story. I hope you find the answers that you need.  At your first visit, you should take copies of all tests youve had done. Prioritize your symptoms-which ones bother you or make your life the hardest. This is something I have not done, but I definitely will on next visit. They tend to listen to the first few the most! If the ER doctor mentioned MS when you had your MRI done, you can bring up that example as a way to mention the possibility of MS.

All the best,
Lola
608161 tn?1221619623
I'm getting nervous about my neurologist test coming up on Thur.  I am so relieved to hear you know exactly what I'm going thru.  I just feel alone in this sometimes (my family is wonderful but they don't actually experience what I'm going thru).  It's a very frustrating process, and I feel like a year is too long (of course I've never had this problem before).  I hope you get your answers soon.  My thoughts are with everyone in this forum.  I'll let you all know how it goes on Thur.
608161 tn?1221619623
So my neurologist was very nice, and listened to everything I had to say.  He ordered an array of bloodwork (checking for RA, Vitamin Defecits-B12, Lymes, Hemoglobin, Etc.).  I called there today because it's been a week and half.  They hadn't received the results so the nurse called the lab for them, and called me back and said she had them and had to have the doctor call me about them.  Which freaked me out.  You can't just have results and not give them to me.  I know she probably can't read them or legally read them to me, but wtf?  I also had an MRA of my brain and throat on Friday as well as a MRI of my C-Spine and T-Spine on Friday too.  I know I won't have those results till the end of the week probably.  I'm just hoping to hear about the bloodwork tomorrow so that can be one less thing on my mind.  
Avatar universal
Hi there, good luck with your results.  I hope you get an answer.  It sounds like your neurologist is nice and testing everything possible.  MRI scans don't always show everything, they are a bit like looking at Mars through a telescope there might be lesions too small to be seen.  Even the timing of the MRI in relation to symptoms can alter the outcome, this is why MS is such a difficult disease to diagnose with doctors using certain criteria to diagnose, you need to show abnormalities on your neuro examination, evidence of two separate areas of demylination and a positive MRI for a diagnosis to be made. Sometimes with the very nature of MS it makes it difficult to diagnose straight away and because the symptoms are so different from person to person and have a come go pattern it is not always evident straight away.

My advice is to get a GP that you feel comfortable with (someone who will take you seriously) and listen well.  Get all the tests done. Don't think the worst straight away, many things can cause neurological problems that aren't so serious. Migraine headaches can cause vertigo, inner ear problems can also cause vertigo, migraines can also cause tingling and numbness.  It is good to have someone to talk to as with the symptoms coming and going (that is what MS does) you feel a bit crazy.  I too don't have any firm answers but my 1st neurologist said proberly MS even with the clear MRI and my second    neurologist (I wanted a 2nd opinion) said Transverse Myletis, I too have had some vertigo which they reckon is from migraine that is caused by my TM or MS like thing that they reckon I have...?? I too feel like I am going crazy as well.  I have post here under MS/Transverse Myletis with my story.  Hang in there, hope you get some answers.

Cheers,
Udkas.
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