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296334 tn?1237638424

Any information would be helpful!!

I'm not quite sure where to start with my problems, and I will apoligize in advance for this being a long post, but I need some kind of answers.  I am a 26 year old female who has been living with lots of strange, undiagnosed symptoms for many years. The doctors seem to think I am too young to be having all these problems and I have actually had one that told me that!!  

It seems as though everything  first started after I fell and bruised my lower back about 8 years ago.  I have since fell numerous times (going up or down stairs, or just tripping, as I am very clumsy) and several of those times I have landed on my tail bone, thus causing chronic lower back pain (extremely painful at times). MRI showed no bulging or herniated disk.  

I think I did have migraines prior to this, but not I'm not positive if  they started before of after.  

About 5 years ago I started having right sided facial numbness along with the "migraines" (when it does this it almost looks like I have had a stroke- my eye, cheek, and lips droop). This happened pretty frequently for several weeks to sometimes months, and then would just go away for several months.  The numbness in my face eventually started happening without the headaches, and I haven't had a migraine in a few years.  I have noticed that when  the symptoms begin it's usually after I have been under a great deal of stress.

I have been to 4 different neurologists over the past 6-7 years.  2 of them never did any neuro testing at all, just diagnosed me with migraines and put me on migraine meds that never worked.  Finally the 3rd neurologist ordered an MRI and EEG.  MRI was normal, EEG was abnormal.  EEG showed that I was having focal seizures, which I have never quite agreed with, as I have never been unconscious nor have I ever convulsed.  And I don't see how a partial seizure could cause your face to become numb and distorted. I was put on Topamax and couldn't handle all of the side effects so I stopped taking it. It never worked anyway.

The 3rd neuro was about 3 1/2 years ago and I have still been experiencing the facial numbness and have started to have more symptoms.  My right arm started going numb when the episodes would happen, and I haven't regained full feeling in my face. The episodes have become more frequent and my lower back pain has become much worse.  (starting to have spasms, and it's getting harder for me to get up and down)

I told my gyno all of my symptoms at my last appointment with her, and she did several tests to rule out autoimmune diseases such as Lupus and RA.  All those were normal, but my Sed rate and CRP levels came back elevated, which are indicators for some type of inflammation in your system. She suggested I see a Rheumatologist since I had been having all the joint and muscle pain, and follow up with my neurologist. The Rheumatologist did more blood work and at first wanted  to diagnose me with Fibromyalgia, but my Vitamin D levels came back as being dangerously low so he started me on Vitamin D therapy.

I have since went to the 4th Neurologist who re-ordered the MRI and EEG.  EEG still comes back abnormal, but no actual seizures this time, and MRI was normal, but when I was injected with the contrast I don't think the tech actually had it in a vein. I never felt it being injected in my veins nor did I have the strange taste that I had the last  time I had one done, and after it was all finished I had a really big bulge under the skin at the injection site.  Not real sure if the contrast makes that big of a difference though.

I was put on another type of seizure/migraine  medicine (yes, this new Dr. seemed to think that it still could be migraines, even though I DON'T HAVE HEADACHES).  I took it for 2 weeks and could not sleep at all, and it made me feel like a zombie,  so I have discontinued using it, and since started on Vitamin D therapy. (I  have read that Vit D deficiency can cause seizures, so it made sense to me to stop the meds and start vit D).

Shortly after this last Dr. visit I started having severe muscle cramps in my arms and legs, and started  waking up every night with my arms or legs or both completely numb. It was happening during the day, but more frequently at night. The numbness even happened across my chest one night, which really scared me.  This lasted for about 3 weeks maybe 4 and I still don't have much feeling in my fingertips now.

I am very sorry that I have gone on and on, but I have been to so many different doctors and have gotten nowhere, and I know that my symptoms are real.  I have looked at many different websites for numbness and the Vitamin D deficiency and a lot of it has said something about it being related to MS.  I'm just wondering if anyone else has had the same symptoms or if I am on the wrong track.  

I have also experienced heart palpatations, vision changes in my right eye, menstrual problems, neck pain (sometimes it feels like electricity is shooting through my neck and lower back), memory problems, sometimes I have a hard time getting my words out or I stutter (which I have never done). Oh, and I have also had this strange pressure in my head sometimes (the only way to explain it is that it  feels like my head is a balloon and someone is just blowing it up) and then I get really dizzy and lightheaded and feel like I am going to pass out.

If you are still with me after this long post, I truly thank you for reading.  I hope I can get some kind of information from this.
19 Responses
296334 tn?1237638424
Oh, I forgot to mention that I also have extreme fatigue as well, and have been tested for thyroid disorders ect... all of which are normal.  The extreme fatigue has been happening for about 2- 2 1/2 years.  Feel as though I can't get through the day without a nap, and it affects my moods, and concentration as well.
Avatar universal
You have so many things going on that really need a comprehensive approach. If I were you I think I'd keep with the rheumatologist, who seems interested in helping you. If you had a diagnosis of fibromyalgia, maybe that's it, or maybe that's it in conjunction with some other disorder.

It seems as if you need another battery of 'rule-out' tests, all coordinated by one doctor who knows you and who has the big picture.

Hope this helps, at least a little.

ess
296334 tn?1237638424
I have had many other tests done and all of them come back normal.  The only things that they have found is that my CRP and Sed rates are elevated, my Vitamin D is extremely low, and my EEG is abnormal.

As for the Rheumatologist, he left me a message on my answering machine with my diagnosis of the deficiency, and told me to follow up with my primary care doctor (which has never tested me for anything).

I am tired of living with the fatigue, numbness, and pain, and not having a diagnosis. I know something is not right with my body, and it is progressively getting worse.

I don't know what else to do, or what other doctor to see.
271770 tn?1221992084
You know I was told just on Monday that I was too young to have had all of these problems I've had too - I'm 24.

Mel
195469 tn?1388322888
I hazard to guess that you may have a couple of syndromes going on here...not just isolated to one thing.

Your symptoms are suggestive of several things, as you already know.  Angel, I have MS AND Fibromylagia and sometimes the symptoms cross over each other.  I have so many painful pressure points all over my body, I have lost count.  Do you have the same thing?  It IS possible to have both diseases at once.

I totally agree with your drive to investigate what is going on with your body.  As far as the seizures; you can have petit-mal seizures and not have any loss of body control, etc.  I am glad that your EEG is now normal.  (My ex sister-in-law) had these kinds of seizures for a long time, before she went on to have full blown seizures, but she had an underlying serious condition that precipitated these seizures.  She wasn't having the same symptoms as you, so I will not get into what was wrong with her, so as not to confuse you even more.

My Primary Care Doctor did more for my MS than any doctor I ever saw.  Even Neuro's.  He was the one that finally sent me to a teaching hospital in Virginia to be definitively diagnosed with MS, after the second Neuro "took AWAY my diagnosis of MS."

Keep searching for answers.  Your primary care doctor may be the one that finally comes up with the right place for you to go.  I hope he/she was like mine and wouldn't give up, until we both had answers.

AND, I have seen and heard of people being diagnosed with MS in their 20's.  Very unforunate to start life with so many problems, but being in your 20s and having MS is definitely not unheard of.... Of course, I am NOT diagnosising MS here, just offering my opiinion.

Welcome to the forum.....We are glad to have you here, but wish it was not under these circumstances.  You are in a great group, I call the "Angels with Invisible Wings."  The most sensitive, heartwarming group I have ever encountered.  They are closer to me, than some of my family members.  I kid you not.  

Be well dear, Heather

230948 tn?1235844329
Hi

I would say fibromyagia from what your describing but then some of the sx cross over into MS but if the MRI are clear with contrast its hard to say and its not impossible to have MS with clear MRI's. How long have you been on vit d theapy? and do you think its made things better?

I cant really say more then that as iv no medical knowledge but your amoung friends here who can support you and offer advise and your so welcome here.

Take Care

Samantha
199882 tn?1310184542
Have you had a MRI of the spine?  That's where My lesions are.  You definetely have something going on and yes it does sound like some of my symptoms but then some of them don't.  I agree with Heather about the doctor.  Had it not been for my primary care doctor I would have never been diagnosed with MS.

I'll be praying,
Carol
296334 tn?1237638424
Thank you for responding!  I have been so frustrated with the doctors that I have been going to!!!  Where do you find a good doctor these days?  

Anyway, I have not had an MRI of the spine, nor has it been mentioned that I need one.  The neuro that I went to still thinks all of my problems are "migraines", but I haven't had a headache in 2 years (not even a regular headache)!!

My primary care doctor, which I was told to follow up with about the vitamin D deficiency, don't think anything of any of my symptoms.  When I asked him what has caused or what does cause the deficiency his reply was, "I guess God just made you that way".  I know God plays a major role in our life and He may have allowed this to happen, but problems like that are caused by SOMETHING.

A lot of people do not realize how bad a Vitamin deficiency can actually be, and with me, I don't know how long I have had the problem.  I"ve read so much in the past month on different things, and it does say that MS is linked to people that have vitamin D deficiencies.  I hate to even think that I have that, but a lot of my symptoms do go along with it, and they have ruled of many of the others that have similar symptoms.

I think I mentioned in my earlier post about having the electric shock sensations (thats the only thing close to describing it) going down my neck every now and then, but for the past 3-4 days it has been happening very frequently and they are much more intense, to the point that it is really starting to hurt.  These sensations are very strange to me.  It kind of starts at the base of my skull and runs down to where my shoulders start, and when it is doing this my whole head it sensitive to the touch. Have you ever experienced anything like this?

Thanks for the support,
Miranda
296334 tn?1237638424
I have been on the Vitamin D therapy for about a month now.  The doctor told me to take the 50,000 IU's 1x a week for 12 weeks and to also take os-cal 2x's/day along with it.  It kind of makes me sick for a couple of days when I take the larger dose, but as far as it making a difference, I can't really tell.  I have times when I go 3 or 4 weeks feeling pretty good, and then I start going downhill all over again.  

As far as the painful pressure points, the ones that really bother me are in my lower back.  I have had the back pain ever since I fell and sometimes it hurts so bad in my tailbone area that I can't sit straight. You can apply light pressure to several different areas in my lower back and it REALLY hurts.  There are a few other fairly sensitive areas around my hips, and the  back of my neck, but I hurt all over most of the time.

Thanks for the post, and for your support,
Miranda
296334 tn?1237638424
Hi,
I answered the Vit D in the earlier post, but as for the MRI they did, I don't think the contrast was injected properly.  I had an MRI several years ago, and when they injected the contrast then I could feel it, and it also left a metallic taste in my mouth. With the first one they started an IV line before they even started the procedure, so all they had to do is add the contrast to the line.  This time they waited until it was time for the contrast to be injected,  removed me from the machine and injected me straight from the needle.  Needless to say, the tech missed my vein several times before she finally injected it.  I never felt it, nor did I have the strange taste, and when it was all over I had a rather large lump under the skin at the injection site.  

I may be wrong and it may have been a different type of stuff they used from the last time, but I honestly think she messed it all up!!  

Thanks for the post,
Miranda
195469 tn?1388322888
I was just going through your post again and something just went "ding-****" in my head.  Do you think it's possible that you have fractured your tailbone?  I only say this, because my daughter did and she complains about so many of the same things you do?

She went through a dreaded Myelogram and it was found that tailbone had been fractured, healed and healed with it pointing inward.  This is turn has put pressure on the nerves in her lower spine.

I trust that you have had x-rays.  What you REALLY need is an MRI of the spine....  AND you need answers!!!!!!!!!!!

Heather
296334 tn?1237638424
I have thought the same thing many times, but I have had x-rays.  Would an x-ray show that much detail though? I have also had an MRI done on my lower back, but with an MRI don't they just look at where they suspect the injury to be?  Would they have looked as low as the tail bone?  They thought I may have had a bulging disk, but of course they found nothing.  They did however say that I had a degenerative disk problem, and I have been told that there was a narrowing in my lower spine. (What that means, I have no idea.)   I have fallen many times since the initial fall and most all of the falls have been a direct hit to the tail bone or to the base of my spine.  There is no telling what I have injured...lol  The tripping and the falling is in itself is a major problem for me as well.

Is an MRI of the spine different than just a regular MRI of the back?  I know when they do an MRI an your back they only do a certain area, or in my case they did.  

I do know they only did the MRI on my lower back.
195469 tn?1388322888
The MRI needs to be done of the WHOLE spine, from cervical to lumbar.  Please know that there is NO white matter in the lumbar area, so there will not be any "lesions" there.  But what you are looking for is not really MS lesions, is it?

But you need an MRI of the ENTIRE spine.  You say that you have "narrowing" in the lower spine.  This is the spinal space.  Where the cord lies and suppose to have "space" on each side of it.  If you don't have that space, there is said to be a narrowing.  Or called "spinal stenosis."  If you have a narrowing in your spine in any area, it can cause all kinds of symptoms.  Let's say it's near the brain stem...that could be very dangerous.  The brain stem controls our autonomic nervous system, such as breathing, heart beat, etc.

My MRI of the spine showed "bone spurs" on the edges of every vetebrae in my spine.  I am 54 years old, so that is not an unusual finding.  If however, any of those spurs press on a nerve, it can cause all kinds of problems.  Tingling, numbness and so on.

I believe alot of your problems stem from your original fall.  There HAS to be something on MRI that will show up to explain your symptoms.  There just has to be.  A myelogram can show pinched nerves, but this is a very painful test.  One that I would try to avoid, unless ordered by your doctor.  That's where I would be begging for some medication to keep my calm and pain free as possible during the procedure.

A simple x-ray, if done in the area of the tailbone, would show a fracture or healed fracture in that area, if you did indeed have a fracture.  You need to find out from your doctor's, exactly how much of the spine has been looked at.    

Just so you know...in my post to you, I see that MedHelp **** out some letters.  Believe it or not, the word I was TRYING to type was d-o-n-g.  Guess that is a word they feel may mean something else, which we will not comment on in this forum...

Heather
305544 tn?1197997610
I just wanted to add that migraines don't always cause pain as many believe.  I also suffer from migraines with aura, meaning my vision is affected, however this occurs without pain.  The first time it happened to me, I was taking an exam in college, when suddenly I thought I was going blind!  I could not see out of the right hand side of my vision.  I took off and drove myself to ER quickly, praying that I didn't go totally blind while driving (that was really stupid of me, but I freaked out inside), when I got to the ER they took my history and gave me an exam and said that I had migraines with aura, and that you don't always experience pain with them or the pain will come usually after the vision problems.  I was told to take Bayer everyday.  However Excedrin Migraine works the best for me and I only take it at the first sign of Migraine.  My neuro now has prescribed Triptyline for my migraines and sleep disturbances.  This is an anti-depressant that is also used for pain.  I think it is helping me with my pain issues, but every once in a while I can feel a headache starting and I will have to take the Excedrin.  I hope you feel better soon, and please keep pestering your doctors for answers, as they work for you---your paying them, so let them know what you want to have done or tested.  I have called my doctor and requested an MRI and got it.  If they deny you, then ask them what their reasoning is or start looking for a new doctor.  Good luck to you, Terrie
296334 tn?1237638424
I'm not sure if I mentioned this in my earlier posts or not, and I don't have time at the moment to re-read them.

In one of the falls I had where I landed on my tail bone, I hit so hard that it knocked me out for a few minutes!!  I was walking down the steps at my in-law's house (carrying my daughter and all of the luggage that goes along with a baby) when my leg gave out and I fell.  I didn't have a free hand so I couldn't brace my fall and my spine/tail bone took the brunt of it.

Just wanted to share that so some of you can get a general idea of how bad my falls have been.

Thanks for reading!!!
Miranda
296334 tn?1237638424
n
296334 tn?1237638424
Well.....I went back to the neuro and explained all of the problems (numbness, tingling, electric shock sensations, blurred vision, extreme fatigue, decreased sensation in my hands, ect..).  The first thing he asked me was "are you having nursing syndrome".  I am starting nursing school in January, and he thought that would be funny to ask!!! He and my husband both were making fun of me with me sitting there.

I do not in any way want to be sick!  I am tired of everybody around me thinking that all of this is in my head.  Sure, I have thought that the dizziness or heart palpitations might be caused from anxiety, but that doesn't cause all of the other symptoms, and I can't fake my face going numb and drooping.

Anyway, the Dr. used a safety pin to check for sensation in my arms and legs. ( I guess this is what it was for).  This is when he finally seemed concerned!  He started at my fingertips and went up my arm, and same with toes to leg.  I didn't feel the pin pricking me until it got to the middle of my arms, and legs.  That kind of bothered me, because I didn't realize that my sensation was that bad.  When I told him about the electric shock sensations in my neck, (which I thought he would think I was crazy) he actually knew what I was talking about and that kind of seemed to pique his interest as well.

He sent me for yet another MRI, this time on my C-Spine, more blood work, and the nerve conduction test.  He is also checking for Lyme disease.  

I just feel like it is going to be the same scenario that it has been thus far. Nothing!!

I don't want anything to be wrong with me, but I do know that what I am feeling is REAL and not in my head, and I just want them to find out what it is, so I can get better.
296334 tn?1237638424
I haven't posted in a while, but have had many more "episodes" since my last post.

Friday I went for a routine eye exam and ended up there for over 3 hours!!!  After having my eyes dilated the Dr. found that my optic nerve has a great deal of pressure on it, and all of my blood vessels are swollen.  She has referred me back to my Neurologist to have a spinal tap done to test the pressure.

She seems to think I have pseudotumorcerebri (Anyone ever heard of this??) due to excessive spinal fluid.  I'm not sure if this ties in with all the other things that have been happening to me or  causing some of the symptoms, but at least now I do know that there is something going wrong and I have proof.  I just hope this isnt the beginning of another string of dead end testing.  

I am beginning to swell pretty bad all over my body especially in my legs (to the point of it causing pain), and have been on diuretics for over 4 months with no relief.
My legs are beginning to feel like they are buzzing when I sit for too long.  Very strange feeling!!!

I have an appointment this afternoon with an endocrinologist about the Vitamin D issues, so maybe he can help out some.

Anyone have any ideas?
373367 tn?1246402035
Someone else on this forum was just diagnosed w/that.

http://www.medhelp.org/posts/show/429935  try this --it was tamhart9.

I don't know that much about it myself, but I am sure that tamhart or someone else will be able to answer your questions.  I would think it could cause all kinds of neurological problems though.

I hope you get some answers soon!  (my feet are buzzing right now!)
Stacey
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