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Mayo visit

PostPosted: March 5th, 2015, 12:29 pm
by leaflea
hi all -- wanted to update you on my visit to Mayo clinic as I sit here now, yesterday, and Friday. I had thorough clinical exam by med student and neuro. He said quite sure no ALS, MS, PD, myasthenia gravis or any such thing. But ordered more tests anyway "to confirm" he was right. Had EMG and saw he ordered it for peripheral neuropathy -- NOT motor neuron concern. Again, clinical is usually enough for them. He told me he had low suspicion of peripheral neuropathy but checked it anyway (for my complaint of cold hands and feet). I was nervous because EMG was only ordered for the calf, the DOCTOR then stuck the needle between thumb and forefinger, and would not give me any immediate feedback when I asked her, telling her that 14 months ago the TECH who did it told me right away it looked good, and said she could get In trouble for telling me that but wanted me not to worry. The doctor said "I want to review everything." Was really scared something had changed. I say this only to show how easily spooked we are. It came out all within normal limits. Of course.

What Mayo is good at is putting it all together. He referred me to an internist because if my many varied complaints and the internist is right away suspecting a connective tissue disorder! As many here on the board have. Ehlers-danlos, scleroderma, or CREST syndrome. And he ordered a boatload more labs. We will see. I can live with it. I came here wanting answers and this may be one.

Also of interest perhaps to many here, I am low on B12. I have emptied two bottles of sublingual B12 over the past year so I think he's checking into my body's ability to metabolize it.

Yay for me, yay for Mayo!

Re: Mayo visit

PostPosted: March 5th, 2015, 1:29 pm
by Yuliasir
Good to read you are Ok :)

I see that many of us are low on B12, so maybe it is common for people with connective tissue disorders (as many fellows complain for combination of those features). Or we just excrete too much :)))

Re: Mayo visit

PostPosted: March 5th, 2015, 1:54 pm
by Ghayes420
Thanks for sharing Leanne. I am sure with a low B12 that they will check on your intrinsic factor levels as well since many times that is the culprit for a low serum B12. As we all know, low B12 can all alone be the cause of most of your problems.

Hoping all testing for connective tissue disorders are negative leaving just the low B12 level to adjust.

Who did your EMG? Mine was done by a neuro, different than the one who did my clinical, but he was able to tell me immediately. They stuck me in 11 different areas.

Thanks for sharing.

Re: Mayo visit

PostPosted: March 5th, 2015, 2:02 pm
by Bibi
Thank you for sharing , it is so Nice to hear that they are so thorough ! I wish i lived in US ! I have so terrible bulbar fear , truble with projecting my Voice , hoarse after eating and clearing my Voice . Going back to neuro ( who says nothing ) in april.

Re: Mayo visit

PostPosted: March 5th, 2015, 3:37 pm
by mwagner
Our symptoms sound so very similar. My hands and feet are always so cold and I have Raynaud's (not severe - but sometimes awful in my feet). I also have low B-12. I definitely have hypermobility, and so do so many people on this board. There just has to be a connection.

Good luck and we're all pulling for no <bad> connection tissue disorder... If you have hypermobility EDS, then it's annoying but that's really it. Some earlier arthritis and stuff like that...


Re: Mayo visit

PostPosted: March 5th, 2015, 7:08 pm
by nickston
I don't have Marfan Syndrome, but I may have something in the connective tissue disorder spectrum. And I have low B-12. hmmm.............

Re: Mayo visit

PostPosted: March 7th, 2015, 5:47 pm
by BFSBurger
Connective tissue disorders are autoimmune in nature right?

My mom had Scleroderma / CREST.


Re: Mayo visit

PostPosted: March 7th, 2015, 6:49 pm
by nickston
no, not necessarily

Re: Mayo visit

PostPosted: March 7th, 2015, 9:24 pm
by Buzznerd123

Re: Mayo visit

PostPosted: March 8th, 2015, 12:35 am
by Yuliasir
Connective tissue disorders are autoimmune in nature right?

not always. RA is autoimmune, while Ellehrs-Danloss is not (it is just a lack of certain type of collagene from the very embryo stage but not a result of autoimmune attack).

Kidney Issues?

PostPosted: March 8th, 2015, 7:05 pm
by leaflea
Kidney problems anyone? I do have symptoms of swelling for nearly two years. Initially it was diagnosed as lymphedema, but now I'm suspecting maybe the labs ordered were not comprehensive enough and I am having some problems with kidney function all along. I just had more labs done at Mayo the afternoon I started this thread about Mayo visit. Haven't talked to the doctor about these yet. Here are the results - all the 8 pages of others well within the normal ranges:

creatinine of 1 (normal range 0.6-1.1)
eGFR 59 (normal 60+ far better to be 90+) indicates mild/moderate kidney damage!
A/G ratio of 1 (normal 1.7-2.8) - this is especially concerning, hoping it has something to do with dehydration! - positive I was dehydrated
Albumin 3.4 (normal 3.4-4.7)
Alpha - 1 Globulin .03 (normal .01-.03)
Alpha - 2 Globulin 1.1 (normal .06 - 1.0)

I am hoping some of these are due to dehydration - some were taken fasting, others late in the afternoon after I still hadn't had anything to drink and a very light lunch so even more dehydrated. Some are just a hair inside or outside the normal limit so nothing alarming (except that A/G ratio which I hope is a fluke, but still showing a trend here, I think. I don't expect anyone to be an expert, but wondering if anyone can shed any light on these. This is important to me. I'd say a wake up call that I need to pay much better attention to proper nutrition.


Re: Mayo visit

PostPosted: March 9th, 2015, 1:18 am
by Yuliasir
nope you do not have kidney damage, as you are still at low edge of norm for our age and gender. This is even not mild kidney damage and of course not moderate one. figures lower than 50 to 30 are considerd as well compensated kidney failure. lower that 30 to 15 as poorly compensated, at 15 or lower you need dialysis or translplantation. So having low diuresis due to not enough water inteake is a good explanation. As for figures, I took them from sme EAU papers which I was translating this year so they should reflect rather european approach but stll can give you an idea that severe damage starts at twice lower eGFR than you have now.

I have edemas (in legs, quite severe, slowly evolving for the last 3 years) due to bad venous circulation and extremely sedentary way of life, so I started some fitness program and found that this is really the only thing to help for now. Hands might suffer the same, if you have venous valves insuffisiency, practically no matter where it happens - in the legs or in the arms, result would be the same.

Re: Mayo visit

PostPosted: March 9th, 2015, 11:32 am
by leaflea
Thanks, Yuliasir! That helps. The swelling is a bit of a mystery as I do exercise regularly and after doppler veins were pronounced "perfect." I was told I had lymphedema which is very unusual, I now wonder if they investigated kidney enough which would be a good explanation for the odd swelling. I intend to do anything I can to improve kidney function at this point. And it is confusing, to increase albumin I need more protein, and to decrease kidney problems, low protein diet. Any advice out there?

Re: Mayo visit

PostPosted: April 11th, 2015, 11:18 am
by German2
Hi leflea,

I also have cold hand and feet, raynaud's and I have lymphedema since November (and lymphedema doesn't mean water...). Reason is also completely unclear...
I am suspected to have EDS, too. But I think lymphedema is not a symptom of it. In my case I know I have Kryptopyrolurrie which also goes along with hympermobility and the lack of B6 and zinc.I am taking it acutally as infusions..But as my hands and feet start to get a bit weak, I don't know wether this helps to me...

Good to hear from you again by the way!!

Re: Mayo visit

PostPosted: April 14th, 2015, 10:00 am
by leaflea
German2 what is the krypropylurrie? I am not familiar with that term. As time goes on I am more sure I have some kind of connective tissue problem and I am just thankful it is mild. I have the scoliosis, bunions, esophageal problems, hypermobility of knees, wrists, thumbs.... Something set it in motion to make it worse nearly two years ago and I have no idea why or what but I can accept this. I decided not to get it fully worked up. I don't need that diagnosis on my record. I believe it is a clinical diagnosis anyway and not much test could prove it. Clinically, I can see where I fit that picture. Some things are still a mystery and I can accept that too a but better than I could many months ago, and most of my many odd things are most likely related to one another. I haven't even thought of ALS for quite a while and I recognize this is big progress.