Anyone want to try and take a stab at this?

BFS Online Support Group

Moderators: JohnV, Arron, garym

Anyone want to try and take a stab at this?

Postby Craig on November 18th, 2002, 7:42 pm

Ok, I have some interesting symptoms that I thought I would share to see if anyone had any thoughts.

1. High blood pressure
2. High cholesterol
3. High TSH
4. Very high CPK (5005)--biggest concern
5. High aldolase (43.0)
6. High Myoglobin (178)
7. Also worth noting--22 years old, symptoms going on for 7 months now, normal emg at 6 months

The doctor said he thinks I have hypothyroidism and that is contributing to the the other elevated symptoms. I really don't know what to think other than the fact I am scared. Does anyone have any thoughts about what might be going on? Is this stuff at all normal for hypothyroidism?

Thanks,

Craig
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby Arron on November 19th, 2002, 11:43 pm

Go to this web site http://www.medhelp.org/home.htm and on the home page, you'll find a link to ask a doctor a question.

For $13 (thirteen bucks) you can pose a question and 3 doctors that best suit that particular field will answer your questions. It is WELL worth it and it is Harvard University, so you KNOW you are getting good advice. I have done it for my mother for her pain management questions because of her bad arthritis and have gotten great information that my locals doctors couldn't give and/or didn't have.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby Debbs on November 22nd, 2002, 6:16 am

Hey Craig,

I also have used the medhelp site and got myself 3 excellent replies from 3 great neuro's, definately worth it my friend, give it a go :roll:

Let us know what they come up with K
Debbs
Senior Member
Senior Member
 
Posts: 93
Joined: August 19th, 2002, 12:16 am
Location: Australia

Postby Craig on November 22nd, 2002, 10:23 am

Thanks Aaron and Debbs for your suggestions. I actually used the service and got what I felt like were pretty generic answers. That's OK though. My doctors all are quite confused by the high levels of CPK and other muscle enzymes. My neurologist doesn't think it is ALS because of how elevated the CPK level is and the fact that I had a clean EMG less than a month ago. My other doctor is convinced that it is all a result of my thyroid being out of whack, but I am skeptical about that. A third doctor is concerned about another type of muscular dystrophy. I am getting a biopsy done within the next week or two and hopefully that should shed some light on what is going on. I am just praying that it isn't anything too serious....

Thanks again for the support.
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby Craig on December 17th, 2002, 10:48 am

I wanted post a quick follow-up to my prior post. I had all of my blood rechecked and all of my muscle enzymes (including the CPK) were back in their normal ranges. The doctors are all pretty much baffled and don't know what to think. I made an appointment at the Mayo next month, so I hope they might be able to better understand what is going on. Thanks again for everyone's support.
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby Davidd on December 25th, 2002, 8:55 pm

Craig--

Definitely let us know how the Mayo Clinic visit goes. I'm curious to here about your experience there and what their diagnosis is.

--David
Davidd
Selfless giver of time
Selfless giver of time
 
Posts: 157
Joined: September 19th, 2002, 11:59 am
Location: New York, NY

Postby Craig on January 13th, 2003, 11:48 am

I just got back from the Mayo Clinic this weekend with a diagnosis of BFS by the head neuro at the clinic. They said my high CPK levels were of no importance in their opinion, because I have since had 4 repeat tests done with the CPK in the normal range. EMG/NCV was normal and the neuro also said not to worry about tremors or cracking joints, both of which I have, and to learn to live with what is going on. Only other item of interest is that I tested positive for the Gliadin antibody in my blood (I believe is related to Celiac), but I am awaiting for biopsy results to confirm.
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby SusanSid on January 13th, 2003, 12:52 pm

Craig,
Congrats on the clean neuro exam and getting a definite diagnosis from an expert in the field. It must alliviate a lot of unecessary worrying! I was wondering if you still get the feet twitches in the arches? I recall you mentioning that some months ago. Do you still have them? Just curious...obvious I still do.
Thanks
Sue
SusanSid
Selfless giver of time
Selfless giver of time
 
Posts: 172
Joined: August 15th, 2002, 6:01 pm
Location: California Central Coast

Postby Craig on January 13th, 2003, 2:00 pm

Sue,
Yes, I do still have constant twitching in the arches of my feet. I showed the neuro (who was unimpressed) and he said not to worry about them. He said that the calves and feet are common "targets" with BFS.

Take care,
Craig
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby SusanSid on January 13th, 2003, 2:12 pm

Craig,
Thanks for the reply. It actually makes me feel better as I still have the twitches in the arches of the feet almost 24/7 and calves less so. So the neuro was unimpressed? Gee, wish we would be unimpressed too, maybe we wouldn't worry so much! :lol:
Have a great week.
Sue
SusanSid
Selfless giver of time
Selfless giver of time
 
Posts: 172
Joined: August 15th, 2002, 6:01 pm
Location: California Central Coast

Postby DogBone on January 13th, 2003, 3:58 pm

The relationships people are drawing to Celiac and is getting more and more interesting. Anyone tried the diet with success are relieving the BFS symptoms?
DogBone
Selfless giver of time
Selfless giver of time
 
Posts: 100
Joined: January 6th, 2003, 1:11 pm
Location: Utah

Postby javens on January 13th, 2003, 4:32 pm

Hi Craig,
I remember reading that you mostly have twitches in you thigh muscles and that you have a lot of thigh muscle pain. Is that still the case and what did the DR.s say about that?
javens
Member
Member
 
Posts: 46
Joined: October 13th, 2002, 1:23 am
Location: Dallas

Postby Craig on January 14th, 2003, 11:02 am

Hi Javens:
I do have a fair amount of twitching in my thighs, probably second only to the twitching in my feet. I did mention that my thighs were constantly tender/sore to the internalist, who added it to my Mayo record so that the other DRs could see it in my notes. The only other DR to comment on it was the endocrinologist, who put on his notes that I need to rule out McArdle's. The neurologist said that I don't have McArdle's, nor was he concerned about my thighs. He thought the soreness would eventually go away on its own.

Take care,
Craig
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: Bing [Bot] and 5 guests