Strange symtoms/diagnosis, looking for suggestions, someone must have an answer >.<

[Timberton4]

Ladies and Gentlemen,

I am hoping one of you out there would be able to help me. I am seriously hitting my breaking point. Am I just going crazy, am I a hypochondriac, is there something wrong with me? Here is my story:


I am 28 years of age. Ok, I will try to keep this as short as possible. It all started about 6 years ago with cramping and sore feet. I eventually went to the doctor who diagnosed me with raynaud's phenomenon, which seemed to fit my symptoms, so it was left at that with advice to wrap up warm etc etc.

After some time I was again sent to the doctor with severe stomach pains. After various testing I was diagnosed with IBS and PCOS.

A year later, while 6 months pregnant, I was rushed to the hospital by my doctor, for a suspected lung clot, as I had chest pain and difficulty breathing. Fortunately it was not a clot, well I presume it wasn't because they never said. I went on to have the baby with no further problems.

Three years later, and a year after my second child, again I was rushed to the hospital with difficulty breathing with chest pain, doctor suspected a lung clot. Now, they gave me all the anti clotting etc etc. They finally diagnosed me with pneumonia and pleurisy.

Last year, I began having serious chest pain again which changed into radiating into my shoulders. My arms were also two different colours (one arm blue, other normal). The doctors were understandably worried, as was I. They did various heart test etc and eventually it came back as Vasospasms in my arm/shoulder. They are also concerned that I might have unstable angina, so I have to go back every so often for testing.

Now, the plot thickens. I was unwell yesterday and experienced what the doctor tells me is "migraine fortification spectrum". I had no headache with this, just the visual disturbance side of it and disorientation.


Ok, now, I am really starting to feel frustrated with all these problems and not having any real answers. Looking back over the last few years it appears that, whatever the heck is wrong with me, it seems to be moving upward. Started at my feet, then stomach, chest, arms/shoulders and now in my head. I am tired of going to doctors/hospitals. I just want to know if there is something that could link all of these episodes or have I just been very unlucky?

Please, please, please, if anyone has any idea/suggestions of where I should go from here I would greatly appreciate it. I don't want to be sick anymore.

Sincerely,

Una

 

[Ery]

Have you been tested for Celiac disease?

Celiac, an autoimmune disease of the small intestine, can cause a wide range of symptoms. It's a common disorder but often overlooked in the US.


(Spelled Coeliac in Ireland)

 

[kuletboi]

Thank you for replying Auntie. I am sure they have tested for that, they have done various tests over the years. They had thought I had something like a Connective Tissue Disorder but they never confirmed it. For years all they have been saying is, they will keep an eye on me, your too young to suffer from heart problems, etc etc. I am getting very frustrated now as you can imagine

 

[jbelljarnet]

Hi Una! I am a newbie here, but your post caught my eye.

Although, I did not have all of your symptoms, ten years ago I started having unbearable pain in both of my feet. It culminated in my not being able to climb stairs, and I could not find a pair of shoes that felt good. Also, at that time, I remember that I was not sleeping well at all, though I would sleep for eight to ten hours at night. I would wake up feeling as if I had been hit by a mack-truck. Generally, I was exhausted, and I was in pain.

I had to stop working,...ended my career of thirty years,..one I loved very much. I stayed home for six months, visiting every kind of specialist I could find. Not one of them had a clue. My general physician (a man) told me that I was in menopause. Not!!!! Not then anyway.

Anyway, I cried and cried. I felt so painful, all over my body, I could barely get out of bed. One morning I was watching the old Katie Couric morning show. I remember there was a man on her show by the name of Dr. Nye, from N.Y. City. He is an expert in lupus and fibromyalgia.

As I watched the tv, he listed all of the symptoms of these conditions, and I had every single one! He said to have your doctor perform a blood test for lupus, which I did the very next day. It came back positive! My G.P. sent me to an arthritis doctor, who confirmed that I had fibromyalgia, not it's next-of-kin lupus. The only difference between the two is that fibro does not destroy your organs, but it hurts every bit as bad!

The arthritis doctor confirmed that I also had Raynauds (which you have), Sjogren's syndrome (only 500,000 people in this country have it-it dries out your tissues and affects your eyes), and chronic fatigue.

My symptoms were: IBS with constipation, horrible migraines which were increasing from one a month to one a day, every day of the month, in less than five years. Blurry vision, at times. Pain in my feet. Then pain progressed to all-over pain in my arms, legs, hands, neck, back, upper thighs, etc. I felt like I was dying.

The arthritis doctor retired, and because I live in the boonies, there were no others to go to without traveling over two hours, one way, and I could not sit, or stand, that long. I was very weak, and shaky, in the mornings especially.

I went to a pain clinic, and was given a Duragesic patch, which I credit with my being able to get out of bed, after three years! I am not great, I will not lie, but I am much better. He prescribed something for me for break-through pain, and it works. It is better than the alternative,...there is none.

I found out this year, that I have hormonal problems too, which resulted in breast cancer (2nd time). I had a bilateral mastectomy to be pro-active, and yes, I am exhausted, but I am better.

Also, my pain clinic doctor prescribe a new drug called Savella, which I just began five days ago. I was told to stop my antidepressant, so I am dizzy from withdrawal, but I noticed, yesterday, for the first time in ten years, that I actually woke up feeling like I could just get up, without lingering in bed, not able to wake up for an hour!!!!! That's big, believe me!!!

I hope you can find out what is going on with you. One thing I can tell you is not to give up. I live near a county associated with city facilities, so I have also been going there. I am not bad-mouthing local, country doctors, not at all, but none of them had a clue what was going on. Remember, if I had not seen Katie Couric's show that morning, and not heard Dr. Nye, I would probably be in a looney-bin today!

Today, I only see doctors in the city. I can stand the drive now, though I do not drive because fibro causes foggy-brain, and I do not want to put anybody elses life in jeopardy. I cannot concentrate on the road like I used to. I never had a wreck in my life, or a traffic ticket, so I knew I was going to have to give it up.

Good luck dear!!! Keep searching. Go to major clinic's in major cities, if you cannot get a good diagnosis, and if the doctors cannot help you. You will find help if you keep looking!!!! God Bless. katsie:wave:

 

[SHARPY999]

Una: The condition I called Sjogren's Syndrome is connective tissue disorder. It is one of the conditions that the arthritis doctor confirmed with fibro, Raynaud's and chronic fatigue! It sounds like you may have fibro, or lupus. Fibro, like lupus, is sometimes called an 'umbrella' syndrome/disorder. It has a myriad of other conditions, which co-exist, with it. Please get the lupus blood test, and see an arthritis doctor! Also, migraines can be 'silent' and are often caused by hormonal problems. I have had them too. They cause visual distortion. Along with the test for lupus, please have your hormone levels tested. Women, in childbearing years, and older (yes older), often suffer hormonal problems that can cause diseases. One more thing, the Sjogren's is rare, but it is prevalent in countries of nordic/sweed descent (of which, I am neither, I don't think). DO NOT GIVE UP and Good Luck!!!!