Please help me or advise!!!!!!!

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ejcmet
New Member


Date Joined Apr 2006
Total Posts : 11
   Posted 5/29/2006 7:20 AM (GMT -7)   

My name is Eugene and I'm 29 this year.  I am writing to you as it seems as if no one is listening to me.  I'm at my wits end and saw your webpage. I've been having the strangest symptoms the past 3 months and I don't know if this is some kind of arthritis.  If you can maybe just read my mail and point me in some kind of direction.  I feel that my doctors are not taking me seriously and this might be something serious.

 

I was on Cipralex 15mg for about 2 years now and never had any major health issues.  I used Xanor as needed and Stillnox to sleep sometimes.  Other than that, I was feeling fine!

 

Then last year in Dec I had severe pain with my bowel movements and bleeding.  I went to my GP and he saw 2 big polyps and sent me to a surgeon to get them removed.  They were removed on 24/12/05 and I went back for a colonoscopy on Jan 24/01/2006.  The colonoscopy showed no problems and no polyps.  The polyps they found were dx as inflammatory polyps.  No cancer or anything.  The surgeon did diagnose IBS.

 

THEN the symptoms started.  Two days after the colonoscopy I had a feeling of warm hands, pain in my hands and feet, muscle twitches (just at night when I'm relaxed before going to sleep...the twitches are becoming less now).  Shooting/stabbing pains through my whole body.  I went back to the doc and he said it's just anxiety...said to take some Xanor and give it about two weeks.  Well, two weeks went by and no improvement.  I started getting jaw pain (felt like the muscle in my jaw) and headaches.  This is also better now, but still there.  I also have a kind of numbness in my hands and feet sometimes.  The doc did a full blood count, tested for B12, Magnesium, diabetes, thyroid , CK .  My CRP was 5 and my ESR was 10.  The rest of the results were normal.  He then sent me to an Internist and she also confirmed all seems normal and it is most likely anxiety. (I must say that I was extremely anxious before the colonoscopy).  I also went to see a neurologist and he did a conduction study on my arms only and they were fine.

 

So I gave it some time, but started getting muscle aches and pains (my calves would get sore, my neck and shoulders too.  Was getting hip and lower back pain too...although I dont know if it was my hip.)  I started getting abdominal pains (very mild) but I am aware of them. Gets pain under both ribs too sometimes. I also get pain in my quadriceps and biceps too.  Sometimes my joints in my hands are sore and my feet and wrists too. Also get pain in my eyes and neck pain.  So I went back to the doc on 31/03 and he did some more blood tests (White blood count was 11.3, ESR was 7, CRP was 8 (was 5 with the previous test), Rheumatoid factor was  negative  and ANA was negative. S-urate was also normal. He tested for Cytomagella, Epstein Barr and Brucella - all negative)  My doc does not know what is wrong with me.  He gave me no medication other than Paracetamol for the pain (it does not work).  Seems like they just attribute all of this on stress. What worries my is the increas in the CRP and my white blood cell count increase from 9.6 to 11.3 (my doc said this was a marginal high and nothing to worry about).  Unfortunately I'm worried about things like leukemia, cancer or any major disease ....even rheumatoid arthritis.  (RA is prevelant in our family...OA too...).  What I find strange is that all of this started right after my colonoscopy!

  I've stopped my Cipralex and just take Stillnox to sleep sometimes. I though that the Cipralex might be causing the problem....It's been about 1 week now....feeling fine...pain in feet little better though.  He said to give it another 2 weeks and if it's not better, he will send me to another Internist for a 2nd opinion.  Doc, I'm not a doctor, but I know that something is not right in my body.  I've read up on RA, polymyalgia, fibromyalgia and all these things, but my doc did not even mention anything like this (although I mentioned it to him).  So, in the meantime I'm sitting in pain...no one believes me and it really seems they don't care either. Now I'm just waiting it out. Do you have any direction or suggestions that I can give to my doc or myself?  Any tests that needs to be done.  I'll even make and appointment with you if I can. (I know you guys are very busy!)

 Sorry for the long mail, but I've realised that if I don't take responsibility for this, no one else will.  I'm really desperate for some answers!


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/29/2006 10:04 AM (GMT -7)   

Hi Eugene -

I'm sure someone who is more familiar with these meds will be around soon. Unfortunately, I am not to help. This IS a very concerning problem and I think the doctors need to take a better interest in your behalf. Unfortunately, sometimes it is hard to find good ones.

RA factor isn't always positive even when you have RA. I have experienced numerous issues that wouldn't seem like RA, but apparently ARE forms of flares that are associated with the form of arthritis I have (psoriatic arthritis.)

I know people who have had problems like this sprout up right after surgery. Very strange. I'm not sure if it's the stress your body goes through during even a routine procedure like a coloscopy or what.

What I will say is, you KNOW something is not right - no matter what, do NOT give up on your fight for answers. You nailed on the head with you're your own advocate and the doctors aren't going to do anything unless you continue to push for help and answers.  A lot of us here have gone through this with doctors for our various issues.

Where are you, by the way? Do you have insurance that allows you to go to another network for another opinion or evaluation?

Good luck.**

 


 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/29/2006 5:35 PM (GMT -7)   

Hi Eugene,

I read over your post rather quickly, but one thing that really caught my attention was your inflammatory polyps.  I would think that if you have inflammatory anything from down there, it would be IBD, and not IBS.  Inflammatory Bowel disease is a rather serious and chronic condition that must be monitored closely by a GI doctor.  If your current doctors aren't taking your concerns seriously, consider finding another one who will.  You might also want to check out the crohn's forum here at healing well.  You will find a wealth of information on crohn's disease, as well as on the arthritis that accompanies it.

I hope you feel better soon--and that you find out what is wrong.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 5/31/2006 8:52 AM (GMT -7)   

Eugine,
you are way too young to have so much problems and meds.

I have seen people do great with complicated stuff like this by going to something like ann wigmore wheat grass retreat
and getting different eduction about their bodies. Or raw food. Places like hypocritties.

You have to take more agressive responsibility for your situation.
All meds are tough on your liver.
You gotta dig down deep, honey. I know that's hard to do when you don't feel well.

When i'm desperrate i take meds. And i've been desperate plenty, myself.

I just had to stop a medication today because the shooting pains down my legs
i couldn't eveen walk. No pain meds could take the pain away.

It's scairy stuff.

Try going to the health food store and getting a book. You will find people with the same problem you are talking about.

A young guy cured himself of ibs. I forget his name bu he wrote a book.

Get off the computer and into action. Leave those doctors in the dust!
20yrs from now or even one year from now you don't want to see your situation even worse.

Good luck

Bucci

 

FROM MODERATOR:  I edited your post, to take it out of CAPS, I didn't change any of the content.  Duck

Post Edited By Moderator (Ducky) : 5/31/2006 12:19:27 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/31/2006 9:43 AM (GMT -7)   

Dear Eugene,

Might I just start by stating that, "You are NOT too young to have such problems & be on medications".  I am 25 and as you'll see, major disease had started when I was 16 and am currently taking close to 30 tablets of medication daily.

Unfortunately, inflammatory diseases are an equal opportunity employer! :-) They don't discriminate. 

From how you stated the meds you take, it sounds as if you are in the UK? or Canada? Australia?

It is a very important thing to keep a close diary or journal daily of your symptoms.  Exactly where, when, what helps the pain, what makes it worse, etc...  What you describe makes a lot of sense.

My initial thoughts for the description you wrote were fibromyalgia along with an underlying Crohns or Ulcerative colitis like elcamino had stated.

What next?  Think about if you are happy and comfortable w/ your primary MD.  That's important.  Your pain needs to be addressed whether it be by NSAIDs, non opioid pain killers, opioids, anti-seizure meds...pain is now considered the 5th vital sign and I do truly believe that.  Pain is what the patient says it is and doctors are SUPPOSED to listen to what you say...because most times...you cannot see pain.

A consult with a rheumatologist I would recommend.  You may need a referel from your regular doc.

It is sad, but sooooooo many times, if you are young....doctors are way too lax in getting involved.  I know it all to well.

When is your next doc appt.?  and also do you see your GI again?

Eugene, write back soon & let us know how things are going.  You have something going on...it might take time, months even to get to the bottom of things....but you'll get there.

A repeat of all bloodwork should be done again, perhaps by a different lab (all are different & some better than others).  It is important when a difficult or unclear case of a condition is present, to have consistent labs done to keep track on how things are changing.

You've found a wonderful place here at HealingWell!  Very glad to have you. (don't let opposing opinions defer you away! sometimes a "cure yourself" thing is impossible and irrational! )

Sincerely,

Erin


Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/31/2006 10:07 AM (GMT -7)   
just wanted to quick add something regarding Bucci's post:
Eugene, if you do have access to a natural foods store or an herbalist types shoppe, some things to try would be something like an Omega Fish Oil {I like Cor-Omega Fish oil...orange flavored....quite yummy} ginger root teas, peppermint infusions teas, SAM-E and CoQ10.  All are beneficial for inflammatory processes.  Naturopathy treatments take weeks and months to kick in...so an overnight quick response doesn't happen...but they are worth it. Heck...what can ya lose?  If anything they can only help not hurt. (But if you have a blleding disorder like hemophilia...get your docs permission 1st!) They tend to thin the blood.
 
what else?....ok, between the ages of 20 and 35 are the "prime time" for many autoimmune diseases to occur.
also, a person can have the effects you described after a colonoscopy for up to 3 weeks!  a general feeling of lousiness, muscle spasms, etc...  because a colonoscopy between the actual procedure and the prep! yikes! we all hate the prep!  is a bit of trauma for the body. 
make sure you are recieving enough fluids, calcium, and B vitamins because deficiencies in them can cause the fasiculations (muscle twitches) and calf pain.
 
as you can tell, i'm very dedicated to folks in need. you're not alone, so take solace in that.  we're all here to help and guide each other.
 
take care,
erin
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Neuro-guy
New Member


Date Joined Jun 2006
Total Posts : 1
   Posted 6/1/2006 11:46 PM (GMT -7)   
Hi Eugene,
 
I read your post with great interest and I think I can help you here. Your symptoms sound almost identical to my own. Mine are part of an autoimmune condition (one of your wise posters mentioned the possibility of autoimmunity) which goes by several names depending on severity - cramp-fasciculation syndrome, pain-fasciculation syndrome or benign fasciculation syndrome (BFS). It's an autoimmune condition resulting in auto-antibodies being created that attack voltage-gated potassium channels in muscle (by the way many with this condition test negative for the antibody - this doesn't mean you don't have the condition). The good news is it's completely benign - I've had it since I was thirty and I'm now 49. It also gets gradually better over time - I have very few flareups now and when I do they are very mild - don't affect my life at all. The problem is it's sensory in nature and can very painful in the beginning. You'll find it hard to believe that there is not some terrible underlying disease that's causing it. But there is nothing underlying, it's only sensory (muscle/nerve) in nature. Another problem many people have of course is the anxiety and stress of trying to find out what the heck it is. When I contracted this thing there was no internet so I had no idea what it was. I spent several years trying to find out what I had because it's so rare. One neurologist even thought I had ALS (because of the fasciculations)! It really does sound like you might have this condition and if you do don't worry, you will not die! There are drugs to manage the pain while it calms down on its own (neurontin, tegretol). One question I have is does it calm down when you lie down and do you notice that it doesn't wake you up in the night and is either not present or very mild upon waking?
 
Go to the Harvard neurology forums and find the neuromuscular forum. Most people there are people with this condition. Let us know how you do and if this is what you might have. Let me know if there is any other way I can help.
 
Desmond (neuro-guy)

ejcmet
New Member


Date Joined Apr 2006
Total Posts : 11
   Posted 6/2/2006 12:49 AM (GMT -7)   
Hi everyone
 
Thank you all for the replies!  I am from South Africa if you all were wondering  tongue  
 
I went to see a specialist physician for a second opinion yesterday and he was convinced that I have Reiter's syndrome/reactive arthritis.  It might be a bug I pickup up from hospital.  Well, at least this guy gave me something to work with.  I have quite a good insurance plan so I'm going to see a rheumatologist next week.  He gave me meloxicam 15mg to take, but it does not help much.  I was almost convinced this was some sort of cancer, but the doc said my bloodwork is too normal for things like leukemia or a life threatening disease.  I went to see a urologist for testicular pain I'm getting, he did a sonar and says he suspects some kind of infection...it is much better though....went to the eyedoc too and he says there is nothing wrong with my eyes. (They do pain sometimes and they're a bit more red than usual)
 
My pain is mostly a dull aching pain.  Even when I sleep, I can feel that my arm and legs pain just from the pressure on the bed.  It's difficult to exactly describe it as it seems to migrate.  I took a opoid pain killer last night...didn't do anything for the pain!!! confused
 
Sometimes I lie in bed and just think it would be better to be dead than to live like this.  It is really terrible to not know what is going on.... :(
 
I'm also getting rectal pain and pain in my bladder again.  Sigh....I really hope this is not polyps starting again...or it might just be transferred pain....dunno...I didn't like the surgeon who performed the operation last year so I'm getting another surgeon if necessary.  I also feel very bloated the past few days.
 
Neuro guy, I was thinking the same type of thing that this might me more neurological than anything else.  I will give it till the weekend, and if the bladder/rectal pain is'nt better I will have to go back to my doc to get it checked out.  Please pray with me that this isn't anything serious.
 
I really don't know what to do anymore.  I think the docs are thinking "he's still young...shouldn't be anything wrong with you...hec, you're suffering from depression/anxiety too...that MUST be the reason...."
 

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 6/2/2006 10:45 PM (GMT -7)   
Hi, sorry to sound so naive, but have they given you a round of antibiotics lately? I don't know the meds listed by name......
 
Keep up the fight. We've ALL been there thinking the thoughts you've mentioned. Hang in there, you WILL get through this and learn a LOT along the way (we all have!) You are your best advocate, something is NOT right and you MUST fight for answers and relief.
 
Take care**
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 6/3/2006 3:29 PM (GMT -7)   
Hey Eugene, how are you feeling today?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

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