Autoimmune diagnosing problem

Posted by Brie @brie87144, Jul 20, 2016

I don’t know what to do at this point. I’ll give some of back my story, up until I got extremely sick in October 2014, I was completely healthy and what I considered normal. I rarely went to the Doctor for anything, rarely got sick and I was always on the go. I’m a 32 year old female, married with 2 kids. In October 2014 I came down with some sort of virus. I was extremely sick for about a week. Within 2 days of feeling better I started having pins and needles only on my left side in my arm, hand, leg and foot; my left leg also started falling asleep. I just thought all that was weird and went on with my life, not seeing a dr or anything. Starting in January of 2015, my symptoms started getting worse. I was walking through a parking lot when I lost complete feeling of my left leg and fell. It lasted about 30 mins or so before I started getting feeling again. By this time my pins and needles were staying constantly, the numbness was becoming more frequent, and now my left side was extremely weak. After visiting my primary she confirmed the weakness, ran a bunch of lab work and referred me to a neurologist in my area. Fast forward to December 2015, I had 2 mri’s, completed physical therapy and been seen by 2 neurologists, both of which told me they didn’t want to spend the time to help figure anything out. My pins and needles had now migrated to the right side, and my face; I lose complete feeling in my left and right legs, more on the left, as well as in my left hand; My bladder started giving me issues retaining and releasing; I frequently become so extremely tired I can’t get out of bed for days, sleeping the entire time; my balance is so out of whack that there are days I’m walking and I look like I’m drunk because I can’t walk well; started having memory issues, as well as word finding issues. Because of the random dead leg, and balance issues, I fall frequently. So I decided to come to Mayo Clinic.

They have done numerous tests and blood work. I have had a full spinal and brain MRI, EMG (x2), spinal tap, skin biopsy, audiology testing, balance testing, ARS, QSTAT, BAER, VER, SSER, Nystagmography Tests, Tilt table testing, dynamic posturography tests, urology testing, and I’m sure some others I can’t think of right now and all have come back clear except a few small issues, but don’t offer any insight to my issues. I came back positive for small fiber neuropathy, I failed all six stages of my balance testings but because I didn’t need assistance the dr said he won’t consider it failed and nothing was done, they found mild bilateral hearing loss, and my tilt table came back slightly abnormal.

I’ve seen consultative med, hematology, neurology, urology, integrative medicine, and psychiatry. No one can figure out what’s going on but my life has changed so much that I need to figure out what’s going on so I can either treat it or figure out how to deal with it. I have a hard time staying awake, my balance is completely off, I randomly lose feeling in places and fall, I’m weak on my left side and have issues standing for long. I was going to school full time and had a 3.85 GPA until this now it’s dropped to a 2.75. I can’t keep up with anything and I don’t know how I’m going to work when I can’t tell when there will be days I can’t wake up or get up. Or when My balance is so unstable I can’t walk with out help.

I was referred to neuromuscular and saw the Dr this morning. He said I won’t treat anything until we know more, which is fine because I want to know more. But told me to have a great day and didn’t tell me what to do next or where to go from here. He just said send me a message of it gets worse. I don’t have any other appointments or outlook on what to do now. I’m not out seeking, looking for, or even asking for medications. I just want to figure out some sort of normal. I don’t know how I’m supposed to help support my family or work of I can’t even do anything. But not knowing I don’t have many options, can’t get medical help or anything.

I’m so frustrated and feel like everyone’s brushed me off. What I wouldn’t give to just feel normal again or at least have an answer.

@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

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Hi, Amy. Good to hear from you, and that you are in contact with Mayo. My oldest sister has been living in an independent living arrangement in Sacramento CA, and is just now moving to assisted living, same facility. She saved a lot of money living independent as long as she could. Actually the only difference is someone fixing her meals and someone doing her meds and laundry. That independent living was still expensive, but cheaper. Not really a kitchen, just a small refrigerator and a micro and sink. You might find one of those in the area around LaCrosse, in a smaller town. Check with Senior Services or medicare. Also, call the local Hospice for suggestions. As for the wildcaught, I cannot imagine what that would have to do with mis-folded and broken protein chains, but that is your choice. Have a good one.

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@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

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Sorry, I thought you were speaking about amyloidosis in which these proteins accumulate in organs such as heart, kidneys, the nervous system or intestinal tract. I’ll take a look into senior services, as I had entertained the idea previously but not fully until you brought it up. I’ll be 65 in October and if I have to wait until then, that’s not an issue. Anyway, I so appreciate your guidance as I will seek the tests you have mentioned and we will definitely look into those issues. Thank you,
Amy

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@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

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Amy, I am speaking about many things. At one time I operated the Senior Services in our county. We were involved in anything that could help seniors, from age 50 on up, (or down,) if someone was hurting and we could do something about it. For most states, that is the only real limit.
karl

Anyone can love one or two persons. Most can love several. Some can love hundreds. The world needs more who can love five or six billion at a time.

old karl

From Yachats, Oregon, USA as a gift for Jesus, his people, and for general community economic development. We believe that every person has a right to life, liberty and the pursuit of eternity.
http://bit.ly/1RWdsSE Jesus is very clear that being poor is not the way God wants the world to work.
At this URL folks of any faith, ethnicity, race, nationality, wealth, gender or whatever will be able to download leadership programs for the sessions of a community workshop for literacy, for the study of Jesus, and for community economic development. The workshop is for church or other faith group, schools, economic groups, community, government organization, family, whatever.
http://bit.ly/1RWdsSE
Just download material from Dropbox. Remember:
It's free. Also, you can help a lot of people. Just
forward this note to them. Think especially low
income people, perhaps immigrants seeking peace.
Native people or Third World, victims
of abuse populations, migrants, etc.
http://bit.ly/1RWdsSE

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Check with Senior Services about housing. We referred many while I ran the program here. Independent, assisted, hospice, Foster.

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Thanks so much, I’ll check these out. So nice to know about the options and so especially pleased with your personal efforts to help the senior community. I myself was a caregiver for quite awhile and one of the loveliest couples was a pastor of a church and his wife — both needed assistance. After this temporary work, I went back into Corporate America as a top executive making almost $100K. The dichotomy is amusing but everyone should make a contribution in life like this. It certainly sounds like you have!! Thanks so much for helping me, Karl and the senior community. They deserve our utmost respect. Amy

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@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Jump to this post

Amy, just to be sure you understand clearly, I have been studying amyloidosis for about 18 months now. At about Christmas time of 2015 I was given a tentative dX of primary systemic hereditary light chain amyloidosis. I bought a very expensive book, “Amyloidosis — Diagnosis and Treatment”, edited by Morie Gertz M.D., Director of Internal Medicine at Mayo MI. It is written by a group of experts from Mayo and other great medical institutions. Since then I have also read many other papers and books. One of the best is “Heart Like Cement”, by John Helwig. It is his story of diagnosis and treatment. Donella, my wife, says that if the book had my name on it, it would still be true as my life story. It is free, usually from http://www.amyloidosis.org. Anyway, yes, I am talking about the disease, housing, senior services, faith, almost anything I know something about.

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@oldkarl

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

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Good for you, John. So glad you found true experts at Mayo, and have been learning about your disease. I’ll definitely look into this, the test you recommended (I see my functional doctor on June 5th) and we’ll pursue this as a possible event of concern. God bless!
Amy

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I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow’s Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn’t literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I’m seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.

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Welcome back, @bobsconnect! We’re thrilled that you’ve returned, and glad to know that you are faring better. True to the saying, “Behind every successful man there stands a woman,” it is indeed wonderful to have that encouragement and support…sincere kudos to your wife.

@bobsconnect, did you notice any significant side effects from the Cellcept? A few Connect members have posted about immunosuppressant ‘challenges’ and I’m sure they would appreciate your insight.
Are you still averse to “tonic water (yuk), & pickles (yum)” – (one of your past posts) 🙂

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@bobsconnect

I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow’s Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn’t literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I’m seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.

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Hi @bobsconnect, I too would like to welcome you back and I’m glad you are doing better. I especially agree with @kanaazpereira about behind every successful man there stands a woman… Like you my wife is my angel and helps me through my daily aches and pains. I do try to be extra nice to her because I heard her twin sister tell her husband what happens to crabby old men – they don’t get to stay at home, they go directly to the nursing home.

Keep up the good work! and keep coming back and sharing. It really helps others with the same health issues to know that they are not alone. Thank you again!

John

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@kanaazpereira

Welcome back, @bobsconnect! We’re thrilled that you’ve returned, and glad to know that you are faring better. True to the saying, “Behind every successful man there stands a woman,” it is indeed wonderful to have that encouragement and support…sincere kudos to your wife.

@bobsconnect, did you notice any significant side effects from the Cellcept? A few Connect members have posted about immunosuppressant ‘challenges’ and I’m sure they would appreciate your insight.
Are you still averse to “tonic water (yuk), & pickles (yum)” – (one of your past posts) 🙂

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I haven’t noticed any unusual side effects taking Cellcept. I found it amazing that this drug is used for a variety of health issues. I have been taking 2-300mg tablets, twice a day for almost 6 years, which was soon after my first visits with my Mayo rheumatologist. He is treating a number of GPA (Wegeners) patients with great success. To tell you the truth, between the initial Rutuximab infusions and Cellcept, I am almost a new person than I was even 3 years ago.

Now, this med is not a cure, and I could be in remission, and may be for years. Even 20 years ago people with GPA didn’t live more than 5-10 years. So, this is a miracle treatment to me, because I fall within that 5 year window.

I am not averse to pickles or tonic water (especially mixed with Kettle One, and a twist) that you mentioned that I can recall. That use to be one of my favorite social cocktails. However, I have stopped drinking. I might have a beer once in a great while. The concoction of meds forbids me any alcohol. Believe you me, though, I’ve tried a ton of different “remedies” these past few years. However, I don’t recall these particular ones. Refresh my memory.

I hope I was able to help. Happy Independence Day.

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Im going through the same thing. I also had problems with weakness and falling since 2014. I had just came back from a women’s cruise with our church. I was so happy and excited i had a granddaughter who was born while i was on the cruise so i was glad to see her.My daughter gave me to hold her and that was so heart warming. I gave her back to my daughter and i thank God until today. When i gave her back i just fell back and hit my head. I blacked out and didnt know what happened for days. I was in the hospital for 12 days. They were giving so many meds and running so many test and still couldnt find anything everything was normal. Then my family said i was in icu. People from church, my family and best friend came to visit me and i didnt remember seeing or hearing anyone. Only in a bare glance only one i could only feel is my oldest grandson. I told my daughter-in-law i thought i saw him. She said mom he was their praying for you. And i know their were so many other my family told me but he was the only one i could remember. That was the Lord letting me know he would be with me always. I was told by different neurologist so many diagnosises. When i left the hospital and went to rehab the new neurologist said he would run my test all over again. I had confidence in him because he also had a disability. He was paralzed from the waist down. After he ran the test he said i had absence seizures. I didnt believe him because i had seizures before. So he diagnosed with absence seizures. And when i was in the hospital my children said i had 5 seizures. When in the hospital i was told i had heart failure, kidney failure, copd, elevatrd ammonia level, encephalitis and also immune encephalopathy., and sizures. For years after my brain injury it was depression, bioplar and schizophrenia. But so many doctors saifd you dont have any mental issues. Then this neurologist said i had white matter in my brain and then conversion disorder. I thought to myslf ok. I need a second opinion. I’ve been in the er so many times from falling and legs swelling. I didn’t have heart failure and my cardiologist i had for years said i had angina and an enlarge heart. The cardiologist at the mayo clinic said i had neither one only uncontrolled high blood pressure which is controlled now. My kidney failure was actually kidney stones, my ana is positive and my rheumotologist where i live told me nothing or tried to find out why. The mayo clinic is doing that now. I fell in home depot in jan. They said i was hallucinating and they wanted to comit. Then 3 days later they called me an said i had a uti. I’ve been listening to several people with the same problems. After all my surgeries from falling they said i have neuropathy. I’m going back to the mayo clinic for a spinal tap, consultation, neurology, and to see a pulmonogist. And if their is nothing then i will be taking a test and then seeing a psychologist to help me to control my mind to not fall. I just think this is something new and its just a mystery to the doctors but at least at the mayo clinic they are doing something. But i just turn it over to God because i almost didn’t make it so many times but he kept me so many times. I was in cardiac arrest on time but i am still here. So l am truly blessed. And through all thev surgies, hospital admission, er visits, test, rehab i’m still here with all my family and friends. I was going to start working as an occupational therapy assistant. I had a job lined up and i was upset because it took me such a long time for me to get my degree. When one door closes God opens another better then the one you wanted. So now i will be going to school for speech tberapy. I will be giving my testimony at church because the pastors asked me and i will be writing not one book but two. And speaking to others. Now that’s what i call a blessing. So don’t get discouraged just give it to God he will bring you through.

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One more thing to note with the sort of stuff you are experiencing. I have basically the same pile, and have been given many of the same dX. However, I have learned that a dozen different doctors can and will give you two dozen dX for things like this. It can change from day to day. When I first started taking it seriously, I saw ten doctors in five days, and got back 12 different dX. Only one of this still holds (primary systemic hereditary AL with cardiac, pulmonary, renal, thyroid, cerebral and urinary bladder involvement with uti) and I feel I have to continue to question. It is tough to keep track of it.

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@kanaazpereira

Welcome back, @bobsconnect! We’re thrilled that you’ve returned, and glad to know that you are faring better. True to the saying, “Behind every successful man there stands a woman,” it is indeed wonderful to have that encouragement and support…sincere kudos to your wife.

@bobsconnect, did you notice any significant side effects from the Cellcept? A few Connect members have posted about immunosuppressant ‘challenges’ and I’m sure they would appreciate your insight.
Are you still averse to “tonic water (yuk), & pickles (yum)” – (one of your past posts) 🙂

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Thanks much for the update, @bobsconnect; I’m so glad to know that you are doing relatively well.

I was scouring through some of your earlier posts, and came across this message, hence the mention of pickles and tonic water:
You may click on this link, http://mayocl.in/2uMc9wc, but I’ve also copied it below for your convenience:

“My rheumatologist at Mayo Scottsdale, who I see regularly for my Wegeners & peripheral neuropathy, prescribed 0.125mg of Pramipexole (very small white tablet) twice a day when needed for leg cramps and my restless leg syndrome (RLS). I have used it for over a month and it has relieved the gripping leg/toe/foot cramps at night. When I have an over active day, I know I can expect cramps at night. So I take 2, about an hour before I retire with no cramps/RLS. I don’t take it for minor cramping which I seem to get anyway. My co-pay for the Rx is only $5/months supply which is cheaper than mustard, tonic water (yuk), & pickles (yum). I drink tons of water living in Arizona…”

Please keep us informed of your progress, and/or developments, and continue posting and sharing.
Cheers & Best Wishes

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You are so right but when you get diagnoses as heart failure, kidney failure, elevated ammonina which you never had anything with your kidneys, renal failure, parkension disease, seizure, conversion disorder, bipolar, schizophrenia, and i can go on. You just pray you find that one doctor to believe you and in the mean while they are not researching like doctors use to and people didn’t have any many illnesses then i definitley think their is something wrong. Where i live we are the 3rd worst medical care in the US. We have the most opiod addiction in the country. I was diagnosed in 1978 with shingles and here they have just started talking about it in the last 7yrs. I know several people who are getting it and they don’t know what to do and they are scared. One person i was talking to her mother had it twice and won’t even come out the house. I had my genertologist tell me i had a extra vein in my liver and i never heard a doctor say this in my life. I seen this in medical school but never in a human. And this was an older doctor maybe in his late 60’s. I always told him i really respect you for telling the truth. In 2015 i had my procedure and they said i had 5 extra veins in my liver. And i am so blessed and thankful to God i can tell the story. He found it in 2014. And none of my doctors ever told me i had any problems with my liver. When i went to my general practice doctor he,told me we don’t do test for elevated liver. Well he thought i really was stupid. When i know all your standard labs tells you when there’s a problem and you should look further when you see something wrong. Then he put on my chart l had something wrong with my liver 5yrs before we found out. And copies from the lab doesn’t show that. So i am so glad i am going to the mayo clinic and i have recommended so many people there and everyone who know my situation said i’m glad you are going there. So there are several people waiting for an opening to be seen.

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