What to do?

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What to do?

by Chris
(Texas)

Hi, my name is Chris and I am 25 years old. I live in a small oilfield south Texas town. My mother has M.S. and I'm not sure what stage it is but I know it's pretty bad. Since I was 18 I've been dealing with fatigue, muscle spasms, and pain/cramping in all my muscles but mainly my legs.

To add to that my G.I. and urinary are very bad as well, (and) I have suffered very slight incontinence in the past few years. My urination is so frequent it's tiring, and sometimes I feel an intense urge even after emptying my bladder or I'm constantly going every few minutes to let out an ounce or two.

My stomach hurts everyday, and diarrhea is not uncommon a few times a week. I get headaches, and sometimes I feel like my brain is working too hard. Some nights I wake up to urinate more than once. Others I can't sleep cause my legs are all achy and in knots. I've been to a cardiologist for irregular heartbeat and passed the stress test fine.

I've been to a urologist and was told that I get prostatitis, but after a scope though my urethra they found nothing along with my numerous urine tests. (I was) just given tons of antibiotics. I went to a G.I. doctor and after a scope through the mouth and the "other" place, nothing was found and the doctor said it was due to stress.

I went to the neurologist and nothing was found on my CT's, so then I finally got approved for MRI's. Then doctor found a mass in the middle of my brain close to the brain stem where the two lobes meet. He said it more than likely was benign and would like me to get a scan every 4 months.

(There has been) no growth for over a year and a half, yet I still have the symptoms and seem to be more frequent as time progresses. After all this, I told my sister that I was feeling suicidal, because I felt horribly sick everyday for years now and there's nothing wrong with me, apparently.

She is a med student in Denver, Colorado, and she got a friend of hers at hospital university to give my info/scans to the colleges' neuro-surgeon. After looking at it she said that it looks like a mild demyelination of the brain of early on-set MS.

So then I went to a new neurologist here in Texas, of course, and she ordered me new MRIs and and nerve shock and vision test. The brain mass has not grown, and I passed all my tests. My blood test came back with high ace levels, whatever that is, and my neuro said to see a rheumatoid doctor.

He then told me that I might have sarcoidosis and to come back in a year to test my "ace levels" again which I did, and a year later what do you know - he then said I was fine. That was about 3 years ago.

Now I'm just tired, have the same stuff but now I just want peace... I spend my days in the restroom and I'm constantly in some sort of pain and I'm just sooo depressed and tired from all this.

What should I do? Should I try and get some kind of test with my spine? I've also recently fallen into stage 2 hypertension, but it fluctuates from there to normal wherever it wants. I don't know if that has any connection.

I just want ease from my bladder, prostate, stomach, and pain. I just want to either be treated or have some sort of medication. I'm beginning to lose hope. Please pray for me...

Thanks,
Chris

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What to do?

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Aug 11, 2011
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Don't Give Up
by: Anonymous

Hi Chris,
You have so much going on with your health. I really feel for what you are going through. Because of the mass in your brain, I'm not sure your doctor would give you a diagnosis of MS.

I've never heard of anything like that causing multiple sclerosis. You mentioned an MRI. Have you had one yet? And what was the conclusion?

If there is an MS clinic or university that specializes in neurological disorders, they may be able to help you. Are you in the US or Canada? If you're in Canada, I don't know anything about the procedures there as far as being approved for tests and things like that.

I hope you will soon get help as far as what exactly is wrong - the reasons why you are having so many problems. Please keep your hope alive. There must be some doctor or neurologist who can help you in all of this. Your urinary problems may be solved by self-cathing (using a catheter to empty your bladder).

That way you won't have to run to the bathroom all day and night. You can empty five or six times a day. That's what my husband had to do - he had urinary retention. It also helps in cases of urinary frequency.

Although many of your symptoms sound like MS, some of them don't, which is probably why your doctors are having a time with a diagnosis. Have you looked into Chrohn's disease, or celiac disease?

If you do have MS, you may also have another condition as well. That is not uncommon. I know several people who have a diagnosis of MS, plus fibromyalgia, Grave's disease, Chrohn's, or something else, along with it.

Many of the autoimmune diseases have similar symptoms, or can happen to the same person. As I said before, don't give up hope. Keep seeking answers to your questions. As one of Cir's doctors always says, - "The squeaky wheel gets the oil". Don't give up. Someone will help you. I sincerely hope that everything turns out alright for you.

If you live in the US, try looking up advocates for people with disabilities in your area - (like Tri-County Independent Living Center). They may be able to point you in the right direction as far as getting the help and answers you need.

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