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Almost 7 years on and i am convinced the Drs got it wrong (MCTD)

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Lupus
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Posted 5/2/2011 9:35 AM (GMT 0)
Hi Everyone,

I do believe i've been on this forum many years ago when i was first diagonsed with Mixed Connective Tissue Disorder. Couldn't remember my login name or email used at the time so signed in for a new account.

I have browsed on here and off for a while and felt it was time for me to post again.

I am 27 years old and for most of my life had difficulty swallowing - severe difficulties that even orange juice pulp would stick in my throat and choke me. This was my ONE and ONLY symptom - food sticking in throat.

After numerous visits to Drs and various tests including blood work, cat scans, ultra sounds, barium swallows, endoscopies and heaps more i came across a Doctor who as soon as i walked in the door diagnosed me with MCTD - he later did a blood test and confirmed i had this disease.

At the time i knew nothing about it and did lots of research before listening to him and taking any medications. I had NONE of the symptoms that go with MCTD and i felt he was very wrong with his disgnosis, all i wanted was my ability to swallow to be back so i could eat whatever i wanted to.

He promised me if i listened to him and took a stack of meds - 6 or 7 from memory that i would be able to eat whatever i wanted to. I began reading up on the meds and the side effects were scary.

I decided to listen to my intuition and not take the meds and not believe i have MCTD. When i told the Dr this he went mad, said it was serious and could kill me in the long run, my decaying teeth were a sign of MCTD attacking them (Dentist said it was to much sugar and not good enough hygiene).

Anyway 7 years later....my teeth are in perfect form, i have regular check ups, reduced sugar intake, brush and floss daily and have not had a single cavity since. I didnt lose my hair and become chronically ill like the Dr who diagonsed me said i would. Yes i am still suffering with my swallowing problem and it's affecting my ability to live a normal life and just recently i went to a Doctor who seems to think the cause of my swallowing problem is my body producing to much mucous and once thats gone i can eat properly.

I have no joint pain like the Dr said i would have and i am still not showing any signs of his MCTD that he promised me would start showing if i chose not to take his medicines.

I am not convinced more than ever they got the diagonises wrong and were trying to get me onto the drugs for financial gain - the cost of the drugs were very expensive and the Dr gets a huge chunk of commission for selling them to as many people as he can.

I look back and a proud i chose to go against what they told me and listen to myself.

I think sometimes we're to keen to listen to what a professional has to tell us and we unfortunately trust them thinking they know whats best for us when they dont always put our best interest forward.

I am still waiting for the symptoms to appear as he said they would but for now i am battling with getting my swallowing mechanism working well again.

Just thought i'd share.

Posted 5/2/2011 2:55 PM (GMT 0)
tfofd, i do have a copy of the blood work with me here. I got them a few weeks after the blood work almost 7 years ago now.
I'm not sure how to read it or what part of it to write up but all was negative, the only thing that came up positive was SS-A.

I had several endoscopies and they said there was some inflammation from minor reflux, they had me on some meds for it (can't even remember the name of it now was so long ago) but found it didnt help at all. I have also had the esophagus stretched once but that didn't help my swallowing problem either.

I do feel heaps of mucous at the back of my throat - sometimes more than others and i get very nauseas most mornings and bring up a fair amount of it. But the darn thing is so sticky in the back of my throat. This new Dr i have seen who did an endoscopy on me said i had a lot of mucous in the back of the throat and he felt this was what was causing me to have swallowing issues.

I am sorry to hear you havent been able to get a diagnosis. I know what that feels like, it's very frustrating ((hugs)). I hope you get some results/relief soon.
Posted 5/2/2011 3:12 PM (GMT 0)
Hi
Just a tidbit, after several scary episodes of diff. swallowing, I mentioned it to my neuro, who did a test for myasthenia gravis. Mine is attributed to lupus, but it's a blessing to have drs. who listen.
hugs, suetoo
Posted 5/3/2011 4:00 AM (GMT 0)

Fragrance said...

I am 27 years old and for most of my life had difficulty swallowing - severe difficulties that even orange juice pulp would stick in my throat and choke me. This was my ONE and ONLY symptom - food sticking in throat.

I was going to suggest a hiatal hernia, but then I saw that you said you had an endoscopy, so that pretty much rules that out. However, I don't know if this is helpful or not, but it sounds a lot like vagus nerve damage to me. The vagus nerve is a vital nerve that goes from your brain and down your spine. It regulates functions such as speaking, swallowing, gag reflex, heartbeat, breathing, urination and digestion. Damage to the nerve can be caused by neurological disorders, diabetes, infection, trauma, prophyria, and autoimmune diseases. You said your only symptom is difficulty swallowing, but do you ever have any nausea or digestion issues or had a gastric emptying scan done? If you really don't think you have any other symptoms of having an autoimmune disease, it could be that you don't. MCTD or Lupus can be causes for swallowing issues, but can so many other things can cause it as well. I would look into vagus nerve problems if you haven't already. I hope you the best.

Post Edited (pink blobs) : 5/2/2011 10:03:16 PM (GMT-6)

Posted 5/3/2011 12:44 PM (GMT 0)
Thank you to everyone for your replies.

I have never heard of vagus nerve damage before but it definitely sounds interesting and worth me looking into. I will be mentioning this to my doctor next visit and see if he can look into this for me.

I will get more opinions on my blood result too - i never went to far with it as i never felt i had MCTD and just had this gut feeling this Dr was a drug pusher.

I do get nausea some mornings when i have a mucous overload but once ive brought it out i am fine. Had a cat scan done once years ago for this but they couldnt come up with why this happens.

I know this might sound silly but i actually read somewhere once that people with lupus shouldnt take echinacea - so i decided to take regular doses of it to see if it would overstimulate me and it didnt do a thing. I am still convinced i dont have it but would be good to get rid of this darn swallowing problem.

Post Edited (Fragrance) : 5/3/2011 6:55:52 AM (GMT-6)

Posted 5/3/2011 1:38 PM (GMT 0)
Glad you don't have mctd because it can be a horrible disease.

Since when do doctors receive commissions for prescribing drugs?  That is illegal.  They can't even be entertained as they were in the past by the drug companies.  Standard treatment for mctd is usually prednisone and something like imuran later added to enable tapering off pred...both are cheap generic drugs.  There are more expensive treatments like ivig, rituxan, cellcept but those are typcially not used unless the others don't work.

The prudent action would have been to seek a second opinion to make sure of what you had.  MCTD can be very mild or kill you or any degree in between like many other AI diseases.  With few clinical symptoms but a positive lab most doctors would prescribe some course of treatment. 

Dysphagia is a common condition with mctd and is caused by weakening of your swallowing muscles but is usually preceded by the symmetrical weakness of polymyositis and then dyspahgia.

Bill

Posted 5/3/2011 9:23 PM (GMT 0)
Have you had a manometry (motility study)? They feed a small tube down your nose to your stomach and have you drink water to measure you swallowing reflexes.
It's not a pleasant test, but it tells a lot.
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