What do you make of this?

[Angelique13]

Well, by all outward glances most people think I"m a happy healthy 30 yr old women. The truth is quite opposite. I've started exhibiting signs of neurological problems as of about a year or so ago. I have painful surges that go through my head, ears, hands and feet. I have tingling "crawling" sensations that occur randomly and can last for quite a while and worsens when I get stressed. I wake up with sharp pains and go to bed with them. They can start and stop at any time. I find myself tired a lot, but at night it's hard to sleep. I have a serious "going" problem. My friends laugh at me b/c I'll go urinate like 4-5 times in an hour. I also have cramping pain that always is in my lower back, it feels like a heavy period but rarely ever lets up. It's starting to break me down. I am so scared of what I might be facing. My doctor thinks I am showing signs of having MS. I have found myself so depressed and this is not like me. I ran across this site, and decided to write you on the forum to see if anyone can help me shed some light on my symptoms or give me some advice. I am seeing my regular doctor on May 4th. So far she has be on Hydrocodone and Soma, I also suffer from Torticollis a condition in my neck that causes painful muscle spasms. It doesn not help with the twitches in my head or hands/feet. Even with this medication, I am still in constant pain. The other day I woke up and my arms were cramping from my finger tips all the way up to my shoulders, this time, in both arms. For three hours I could do nothing but lay in a ball and cry. It's ruling my life. I could use some support.

[LivingInHope]

I think it is more the attitude of the ER in general.  The ER tries to deal with just emergencies and don't typically like to get into a lot of testing.  I have a loved one who has no insurance.  And I do have insurance- we get treated the same at the ER.

  If you want more extensive testing, you've got to go to the right specialists, ones with excellent training, years of experience, and a listening ear.   It is expensive but if you tell them you are private pay and need to work out a payment plan, some of them just might take you on as a patient!  Nothing ventured, nothing gained except more frustration and poorer health.  If you want to know where you can research doctors, PM me.  

[saynono]

Have you been tested for Lyme's disease?  That is often misdiagnosed as MS, partly because the tests for it are not very accurate...although I think they are better now than they were 12 years ago when my (then) 8 y/o daughter had an undiagnosed neurological problem that they said was likely MS...because they couldn't find anything else to call it.  We ended up getting a second opinion and they treated her for lymes even tho the tests came back negative.  She got better and we still don't know what happened...but we were told that if it was MS she would probably have it within 10 years of that incident...and she doesn't.  I've always thought it was Lyme's.

[Angelique13]

Honey, I appreciate all the questions but knowing that they should be checking these things is frustrating b/c I'm telling you they do not treat people who are uninsured the same way! I have voiced my complaints and they turn a blind eye... It is like a nightmarish merry go round that I can't seem to get off of! They just write me scripts and send me home. I had to get an ER doctor to check my ears three times once and finally one of the nurses said my ear was infected. I had to beg for antibiotics.

I have been to the hospital with kindey problems/pain/difficult urination, and they treat me like I have an STD! It's horrible. They even found the spurs or crystals from the stones but never sent them to a lad to get tested to see what they were made of.

I take a potassium supplement pill everyday now. And no I"m not a man I just never went through and "changed" my profile.

I've never had surgery but from what I understand of my friends who do have endometriosis that it's near to impossible to get pregnant when you have endometriosis. I do have horrid sharp pains in my ovaries and I don't know where it's coming from. I take my birth control to keep "cysts" on them under control but it's like a surge will start in one and go right into the other...very painful!

Thanks for addressing my concerns. Until I have insurance I'm afraid I will be in a state of frustration and pain.

[LivingInHope]

I believe for a competent radiologist, your insurance status should not matter to what they are reading on your MRI.  You have a right to go their medical records department and request a copy of your MRI report.  They might charge something for the page or not, depending on their policy.  Have you had your blood calcium level checked regarding those kidney stones?  RE: your vertigo- have you seen an ear, nose and throat specialist to rule out any vestibular issues?  So, you're going to check about the anti-diuretic hormone and the potassium?  Also, you may want to correct your profile, since you say you have had two viable births it says you are a male.  The only way you can truly know you don't have endometriosis is with surgery- you've had surgery then to verify this?

[Angelique13]

I have had MRI's done and they say that it is normal.However when you have no insurance you don't exactly get the same treatment as someone who does. I don't have a UTI, I have been checked for them but I do have kidneys stones, often times I don't even know I am passing them, sometimes it is very obvious that I do. I am in the process of having a spinal tap scheduled, this is of course would be to detect protein in my spinal fluid to see whether or not it's MS. I hear there is another way to check for it but I"m still in the dark about it. I don't have endometriosis. I have had two pregnancies, both viable births. As far as I know my hormone levels are fine, they have done blood tests. Upon reading up on MS I found that often there is a kidney problem associated with the disease? Those are really not the most significant symptoms I'm having, vertigo, the sharp pain in my limbs and head are teh worst of it. I often get dizzy and have to sit down or I feel like Ive been spinning in circles. I dunno, I will def raise any questions to my doctor on my next visit though just to verify that these are not issues. Thanks!

[LivingInHope]

Has your doctor done an MRI of your brain and spine to check up on her theory of MS and also your spine to check to see if there might be some other spinal source of your back pain?  Have they checked your kidney function, checked for UTI, checked for interstitial cystitis, checked your antidiuretic hormone level, checked to see if you have a fibroid tumor, as I did at one time, pushing on your uterus, regarding your frequent urination?  I also had endometriosis on my bladder- likely another source in the past for frequent urination for me, definitely when my bladder was folded and stuck to my uterus with the sticky stuff it caused me to urinate very frequently.  I now have interstitial cystitis, which can cause frequent urination.  I also have POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia (dysfunction of the autonomic nervous system) & what can happen is the salt seems to get out of balance, so I can go a lot when that balance gets really bad & the urine can be practically colorless.

Regarding it being hard to sleep at night- have they checked for any hormonal imbalance that might be contributing to this?  Have you tried taking magnesium at night with dinner/supper?

Regarding the muscle cramping- have they verified your potassium is not low?