551343 tn?1506830518

Introduce yourself here.

Hi everyone you can introduce yourself on this thread.

What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.

You can read about me on the top of this page.

3 years and 1 month I have been waiting. Mariax
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1530171 tn?1448129593
Hi Amy, (I took the liberty to read a couple of your posts and Journal entries) could you please post again with a new post here in this group?
It will be more visible and it may also help the group, as it has been inactive
for a few weeks. It will be nice to kick start it again, lol!
The person who started this group, has pulled away temporary for health reasons and I was recently given moderator rights.

I think I might be able to offer you some advice, but I'd like to know a few more things.
What are your heart/CVD issues and what drugs are you on for that.
What are your stress levels & how is your husband's condition affecting you?
Have you ever been in therapy?  Are you under the care of an Endo for your thyroid issues?
If you have this information posted  already please let me know where I can find it.

You seem to have a lot of issues, which scream: One main overarching root cause for what seems to be a systemic "Autoimmune" type of condition.
(I mention Autoimmune type b.c I think autoimmune is a medical description of convenience, as there are more layers that need peeling- too complex, time consuming and unprofitable for the med. system to approach properly). If I were you I would not keep my hopes too high for significant
improvement with the conventional medicine, as they have a dismal record in treating chronic conditions effectively.
Why do you think this group was started?
Honestly, not that I want to sound negative, but I personally reserve conventional medicine only for acute situations like emergencies.
Just some food for thought. Your condition being systemic, requires a multi-faceted approach , involving many systems and
organs of your body that are interconnected and have been affected by- so far undetected- underlying causes.
I sympathise with your need for pain and symptom management -( I have been in a similar situation as you long time ago), but unfortunately the price you're paying is further gradual deterioration of your health. There are many alternative things and remedies for symptom management that are safer and inexpensive, without the unwanted side effects and I can share this information with you, if interested.

Thank you for the consideration and I'm looking forward to seeing your new post here. You may ask me any health question that concerns you.
I have  training and/or experience in Holistic Health, Nutrition, Psychotherapy, Naturopathic Medicine, Hypnotherapy and presently working towards putting together a comprehensive Fibro-wellness program.

Best wishes.

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390388 tn?1279636213
Basically I've been dealing with pains now for over 13 years.  I've since been Dx  with heart issues, hypothyroidism, different deficiencies, osteopenia and (type ll diabetes -diet controlled?).  Last week I was told FM; but, not for certain.  I question it all starting with a chubby kid flying down over a steep hill and bent up the front of his bike and wheel into my back.  Also stupid of me trying to lift a 80# box up over the front seat of my blazer, twisted and snapped a couple ribs.  Dah.  
Anyhow, the winter months are the worst with pain only now that it's summer I'm still in pain this year.  I'm also itchy; but, have no real rash.  My pains are growing worse all the time, and my vision is getting worse.  I had a ton of blood work, a lumber spine MRI coming up in 2 days, bone dencidy (spell check) study, and ultrasound coming up due to a possible goiter.  Fingers crossed on 13 years of some possible pain relief.  Sigh
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Avatar universal
Thank you for the invitation. :) I started to type up my introduction, but I got frustrated because I'm having a lot of cognitive difficulties and can't seem to piece together my words or sort out my thoughts lately. I'll finish it later!
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2034625 tn?1392643292
The group has gone a bit dead in recent months, but could easily pick up again.  I'm subscribed on this thread as I'm sure others are as well.

Why not start a thread and tell us your story now that we know you're here. :)

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Avatar universal
Wow, I've been on Medhelp for years and had no clue this group existed. I wish I had! I was going to type up my story, but it looks as though this group is pretty dead now. Let me know if anyone's around and wants to hear it, though. I'm going to finish up reading the rest of you guys' stories now. Frustrating though it might be, it's at least nice to know you're not the only person going through mystery neuro hell. Most of the time I think I'm just crazy and making stuff up because dozens of doctors have told me I'm normal, but then why the hell would I make this stuff up at 23 years of age when all I want to do is start my life instead of sit back and watch everyone else begin their careers, get engaged, travel to Europe etc.?
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4173379 tn?1355356551
Hi there, thanks for your story, I have a suggestion to check out irondisorders.org and they explain a lot about the relationship between neurological disorders and iron and even MS and iron. You may find something there to consider.

Take care...
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Avatar universal

I am a neurology patient.  I have been one since September 2004.  My symptoms were activated while on active duty. My primary doc consuled with Walter Reed's Neurology Clinic. After the following occurred: I started have spinning sensations which turned out to be vertigo and meniere's disease.  I began havin tingly and shooting pain down my legs.  I experienced pins and needle sensations when warm or under the covers.  The back of my right eye became too painful to bear.  Although, this happens at least monthly.  Eventually, I was honorably discharged from active duty and sent to the Veteran Affairs Medical Center's neurology clinic.  I have been in limboland since March 2005.  Since arriving here I have had 19 MRIs.  In 2006, two lesion seperation in time was discovered but no action taken.  Now I have about12 lesions with three of them having been enhancing for one year.  I have been told that it is not quite MS.  So, I have been diagnosed so far with any disease that mimicks MS.  Two Neurologists have  stated my t2 flares are actively enhancing.   But, would report my lesions are stable.  And, one was going to suggest working up a report for MS.  But, did not because I have been up to that point which is 2011, diagnosed with mimicking MS diseases.  So, he saids to me MS is a difficult disease to diagnose.  And, since then, there has been a reluctance to diagnose me.  So, each resident insists on just treating my symptoms.  I take baclofen, tizinadine, gabapentin and othrs for spacity and spasms.  I take metlizine and direutic for vertigo and meniere's disease.  I take steroids for inflammation.  I take other meds that compliments those listed.  The diagnostic studies done so far are MRIs 19 of them, VEPs 2 of them.  Both were abnormal.  I have had uveitis and optic neuritis many times over.  prednisone liquid was prescribed.  I even lost my vision for a week and a half.  I have had blood and CSF workups. Now I must stop here because I hands are spacitic and trembling. I will tell you more later.  But, this is my intro to everyone here.  I hope to learn a lot  from this forum.
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4173379 tn?1355356551
Came across this site several weeks ago when my husband was diagnosed with Hereditary Hemochromatosis...HHC for short. This was another kick to the gut as a couple years ago he was diagnosed with Hep C, and at the same time as he was told about the HHC he was told the Hep C is genotype 1a. So, not to be dramatic at all, he has the two most unfavorable diseases that affect the liver, the HHC is genetic and has been storing iron from birth which first goes to liver and heart, and on top of that about 30 years ago they feel based on his medical history, he contracted Hep C, which of course, after such a long period of time is deadly to the liver. So he has Stage 2 periportal fibrosis, gallbladder disease, pancreatic nodules, polyps on colon, joint and muscle pain that leaves him immobilized almost...all from HHC and Hep C. He was found to have the heterozygous mutations C282Y and H63D combination in the HFE gene that controls the amount of iron your body stores. This is phenominally underdiagnosed COMMON genetic disorder and early detection is the KEY, as treatment for it prevents the progression and subsequent damage brought on from iron storage. A person can ALSO be anemic and iron load at the SAME TIME!!!  The blood tests are simple, they are NOT part of routine blood tests doc orders, and so it is being missed. Docs are uninformed and have been educated on how to look for certain criteria, and those are so wrong, those criteria/symptoms/presentations they are taught to look for are all END STAGE issues.

If you or anyone you know are being told they have fibromyalgia, osteo arthritis...get this checked out. These arthritic symptoms are first to show up in patients, as is chronic fatigue.

If you have been diagnosed with Hashimoto's or hypothyroidism, or have symptoms of thyroid problems but your tests come out "normal" (TSH level)...get checked for HHC. Iron loads on the pituitary gland.

If you or anyone has been struggling with heart palpitations, enlarged heart, congestive heart failure, or other unexplained heart issues...get checked for HHC. Iron loads on heart second after liver.

If you have diabetes...get checked for HHC. Iron loads on pancreas and causes diabetes.

If you have been told you have cirrhosis of the liver or liver damage, get checked for HHC...even if you do not drink or only occasionally. Docs tell people they are closet alcoholics because of liver damage OR elevated liver enzymes, that cannot be explained by anything else including lifestyle, this is a red flag and should be investigated further for iron overload.

If you have chronic or increased mental fog and confusion, or "dymentia" type symptoms, get checked for iron loading. Iron loads on the brain and causes memory loss, confusion and brain fog.

If you have what docs tell you is IBS, or colitis or other digestive issues, get checked for iron overload. Excess iron is absorbed by the intestine after being released as a free radical, and excess iron transporting through body oxidizes on organs, in joints, and in tissues. The two most common joint replacements are hips in people with HHC.

Your levels should be (optimal...lab reference values will have their version of normal)


Ferritin 70-100 ug/l
Transferrin Saturation (TSAT) less than 50%

There are other tests like AST, ALT, and GGT that will indicate if there is liver damage and will be elevated. But they are not always elevated if early on in diagnosis and liver damage is minimal.

There is also serum iron and TIBC which gives more rounded iron picture for your body.

For Pre-menopausal women

Ferritin 40 -60 ug/l
Tranferrin Saturation 25-35%  (anything over this and needs further investigation.)

Docs are hesitant to do further testing when your blood work comes back and everything falls into the normal reference range, but these are only ranges and are often not sensitive enough to pinpoint HHC or iron loading early enough. So you need to be your own advocate and demand more tests if you have any unexplained abnormal symptoms they can't find source. If your doc doesn't want to dig, find another doc. In HHC, patients go through and average of three docs and up to 10 years before getting correct diagnosis, and often this is too late or damage irreversible.

HHC afftects women equally as men, nut men are found sooner due to them not having a period as women do, so women usually don't find out until 60's or later, and men usually in their 40's and 50's.

So for all who need to know, and who are in a state of constant questions/worries/anxiety regarding odd symptoms the doc can't seem to pinpoint, ask for the screening for iron overload. They may be skeptical, they may scoff, they may tell you you are anemic, they may tell you they've checked your iron levels...be persistent or find someone who knows about this disorder. It is a simple treatment plan, and prevents many other common diseases and ailments.

Good health wishes to all, and thanks for being here. I have found many encouraging stories and posts from all of you. I hope this can help someone. I am not a doc, and don't have all the answers, but what I don know now has come from hundreds of hours of research and reading and compiling many experts findings over time.

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2034625 tn?1392643292
It sounds like it would be worth a try.  Sorry I don't have any helpful information to pass along, but I'll be thinking of you and hope that you get answers soon.  

In the meantime, I hope you'll post back and let us know how you are and once you get answers, what they were.  It may be helpful to someone else who comes here looking for the same answers one day.  :)

Wishing you well.  
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1035400 tn?1351541684
Thank you, Laura.  I did go to Mayo, at the time I had been diagnosed with hypogammaglobulinanemia, and had been on high doses of prednisone for a long period. I saw several specialist, but it was difficult to discern what symptoms I was really having vs. what was steriod induced. In the end, they decided the hypogammaglobuinanemia was steriod induced, provided a better tapering schedule, and sent me out the door. The only other issue they addressed was knee pain-apparently I have avascular necrosis in my right knee, again due to prednisone. So, I stil don't know what is causing my blood clotting levels to be so high, nor what has caused my other symptoms. I may go back to someplace like Mayo if I don't get any where in the next couple months.
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2034625 tn?1392643292
I don't have any advice or wisdom to share with you.  I can say that I'm terribly sorry to hear of all that you've been through and that you're still without answers.  Reading your story, it does sound as if your doctors have eliminated a number of things even if that hasn't so far brought them any answers.  I do hope that the answer is not long in coming.  

Have you been to a specialist hospital such as johns hopkins or the mayo clinic?  The National Health Institute in Washington DC is often interested in solving unsolved medical mysteries.  Would it be within acceptable travel distance to give them a call and go to see them?  

I'll be thinking of you and hoping that you get answers soon.  

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1035400 tn?1351541684
I have an undiagnosed or misdiagnosed condition, for the last 6 years. I am looking for anyone with similar experiences, input, or ideas.

2006 Small left pulmonary embolism treated with coumiden, followed 10 days later by a massive pulmonary embolism with an INR of 4.0. Subsequently I was put on Lovenox due to coumiden failure.  Later that year I suffered a miscarriage.
2008 Pregnancy resulting in IUGR baby healthy but born at 3lbs. 15 oz due to placenta clotting between 8th-9th month.
2011 Switched from Lovenox to Pradaxa due to loss of insurance.
Aug 2012 "shower of mini clots to brain" put back on Lovenox.

I was initially diagnosed with Antiphospholipid Antibody Syndrome because of 2 positive Lupus Anticoagulant tests done right after my pulmonary embolisms. That diagnosis has been disputed because many subsequent tests for that have been negative. However, I do have elevated levels of the following from testing done this month.

Factor VIII level was 326% ref range below 150%
Von Willebrand Factor was 295% ref range below 150%
Von Willebrand Activity was 448% ref range below 170%

I have also had a consistently elevated WBC for 6 years ranging from 12,000-20,000 and has gone as high as 40,000 with lung infections.

My Kappa/Lambda ratio in urine was also found to be elevated within the last year. Initially started out as just the ratio, then subsequent testing showed Kappa was elevated as well. It is NOT found in my serum.
Kappa/Lambada ratio 16.84 ref rang 2.04-10.37
Kappa 79.00 ref rang 1.35-24.19

I have a history of recurring severe lung/sinus infections since childhood. I had decreased levels of IgG which resulted in a diagnosis of hypogammaglobulinanemia. That has since been disputed and many doctors now believe it was steroid induced. I also have a history of gastroparesis which comes and goes, and high blood pressure.

My symptoms include Livedo, headaches, vision issues, transient TIA episodes, severe muscle spasms that come and go, musle myalgia's, severe fatigue, discoid plaque like skin lesions (typically confined to lower legs, although have had on upper thighs, breast, and arms), and pain in my hip joints.

I have had 3 bone marrow biopsies, a kidney biopsy, and 3 skin biopsy. My last bone marrow biopsy showed a slight increase in plasma cells 7%, but not enough to diagnose mutiple myeloma. I have been tested for just about every autoimmune disease out there I think. I was scheduled for a VATS lung biopsy because my last CT showed tree-in-bud opacities, but had my mini strokes the week before so it was put on hold.  My hematologist has brought up sarcoidosis, but other than that, he has no idea.

I think my worst fear is going through yet another biopsy only to be told "I don't know". The only other disorder I can find that seems to fit is Sneddon's syndrome, but I have not had much look with doctor's here being willing to consider something rare or outside their comfort zone. My hematologist said he had never even heard of it, although he was willing to research it. I am still waiting to hear back.

So any input, info, similar experience, or ideas I would love to hear them. I am ready to get off the medical mystery merri go round.
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4055344 tn?1349379395
Ricobord, I have heard Lyme disease can get worse with steroids. I need to see my PCP and will bring it up to her and maybe get tested for that.

The very first day I took my 40 mg of Prednisone, my hands started burning, wrist and elbows hurt and finger tips went numb. It has gotten better since I've been off but stayed that way the whole time I was on prednisone(2 1/2 months). My GI told me people get weird stuff on prednisone, but when I came off of it, the hand prickling stayed and then my bladder and feet started bugging me.

I don't mention the problem starting with prednisone to doctors anymore because they look at me like a crackpot. Prednisone is used for MS and most auto immune diseases, so they find it strange it would happen when I went on it. That's an evil drug and I had eye issues, headaches, anxiety, face pain and skin rashes. I had a bag of weirdness while on it and some it has remained. I have not been the same since.

I have to admit, I don't feel horrible(except for my bladder nagging me all day). I am not tired my joints don't really hurt, so that is why I have  not pushed for the Lyme test. My friends daughter does have it and she tires easily and has lots of joint pain. I will research it a little more though.

I'm hoping to wake up one day and all will be gone. Thank you for the information.
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Avatar universal
AmyKate - please read my post above to Mables3. While you may have MS, you may also have Lyme that is mimicking MS as mine did.  Some doctors who treat a lot of Lyme have theorized that when Lyme is mimicking MS, there is usually a second infection present called Bartonella. (True for me.)

I encourage you to also find a LLMD and get tested at IGeneX. I did both and I truly believe it saved my life after I had been through a dozen doctors, 2 ER visits and a hospitalization.  An important clue for Lyme is that you feel so horrible.  MS patients don't usually feel so horrible at disease onset. However, a late stage Lyme infection with neuro symptoms usually makes the sufferer feel horrible.
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Avatar universal
I haven't been here on this forum in a while, but I thought I would respond to your post and suggest Lyme Disease.  When a Lyme Disease patient is given steroids, they generally get significantly worse. I developed all kinds of new symptoms for 3-4 months straight after only a prednisone shot (which put me in the ER for worsened symptoms) and then four days of oral pred, after which I felt horrible.

I have also read stories of Lyme infections reactivating or worsening Crohn's and IBS.  (I had IBS-like symptoms with my Lyme and a Bartonella coinfection.)

A huge problem is that up to half of Lyme patients test false negative. Doctors were taught that a negative means you don't have it, but that is not true. The CDC surveillance criteria was developed to track a narrow definition of Lyme Disease as seen in New England (sore knees and a bulls eye rash). It was designed to produce a minimum of false positives, without regard to how many false negatives it produced. I don't know how it came to be a diagnostic absolute, but in reality, a negative result does not exclude Lyme at all.

You will want to find a LLMD, a Lyme Literate Medical Doctor, as we patients call them.  You can find one through your local Lyme support group, your state's Lyme Disease Association, or at ILADS.org.  You will also want to get tested at IGeneX, a specialty lab that finds more cases than other labs.  

There is also a test called a CD57. It is an immune cell only suppressed by HIV and Lyme. Most people with Lyme for a year or more will have a low count.

You can Google "Tom Grier Lyme" and look for his articles explaining testing and why it is such a problem.  You need a LLMD because they know how to make a clinical diagnosis based on symptoms and history, with testing as a support, not as a decider. Also a LLMD will treat you until you are well, and not just for the 2-4 weeks that the IDSA says is always successful.

You can also check out the symptom list in this document. It is written for doctors, but I found it really helpful.
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Avatar universal
A blessed day to all,

I didn't see this thread for some reason the other night when I found this forum so I wrote a post called a quick hello and prayer for all. That night when I found this forum I felt sort of relieved to find people going through not being dxs just like me. Mables3 I know what you mean about family. Although mine don't think I am nuts, they just don't know how to act or cope with me feeling the way I do. This forum is a godsend.

Now, everyone don't get me wrong my husband is an amazing man, but sometimes he just doesn't know what to do since we don't know what's wrong with me. For the past four yrs my health has been a mystery. Tingling sensations in legs, arms, and face. Dizzy spells to the point where I need help to get around, and pain. Just some of my sxs that come and go and effect my life when they please. But I am back in a health program and ready to start on the journey to answers agian. I will be praying you all get answers soon too.

God bless all of ya,
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4055344 tn?1349379395
Wow, I can't believe so many people can't get a firm yeh or nay for this disease.  I'll try to keep my story short. I was dx w/Crohns in March 2012(moms side of the family). I'm 47. While on Prednisone my hands intermittently burned and and finger tips went numb(I know, weird it happened while on Pred). Anyways, came off and have had a bag of weirdness since. Still have intermittent burning hands and tingling and buzzing feet. Twitching all over. Mild balance issues and major, major bladder issues. Actually, that's the worst one. I also have (4) 2nd cousins with MS. Had brain and cervical MRI all normal. Have herniated discs. Got the cortisone shots. Helped my stiff neck, but not my hands. Urologist can't find anything so far and my neurologist just reordered my MRI for my brain and cervical for next Fri. Had lots and lots of tests especially for vitamin deficiency's. My Crohns is mild luckily. Well thanks for letting me vent. I think friends and husband are starting to think I am a nut bag.  
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2012515 tn?1353875525
I'm sorry there was no answers yet.Some things take awhile,even years as many on this forum and the MS forum have told me.So keep your faith and keep us posted.

Once you get new info you can start a new thread/post and that will be read quicker.

As I told you in the note I sent, there are some awesome members and they will be along soon.:)

Wishing you the best and lifting prayers too!

Hugs and blessings,
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3242961 tn?1352116876
Update: I had my 2nd MRI yesterday.

Today, the neurology department called me and said that my MRI was "unremarkable"- so that's good.... But the "mystery that is me" continues.

Next, my neurologist wants (and I do too!) me to see a neuro-ophthalmologist at his hospital because of my vision issues that have been here since Feb, and seem to be manifesting new symptoms- but I don't know when appt will be scheduled.

If nothing "remarkable" is discovered from the neuro eye exam, then I get another spinal tap. And at the end of this month I still have a brain EEG that is already scheduled.

So Neurology doc is still looking, but finding no reason for me to be feeling as poorly as I am or to be having the problems I am.

As glad I am that the brain MRI was "unremarkable", I'm also struggling as it again prolongs the unknown. So, I have very mixed emotions today.... I'm glad, but am also frustrated at another test with nothing "helpful" (please understand I'm grateful there wasn't something awful) and frustrated at the continuation of the "mystery that is me" and having to schedule more tests.

I just (like most everyone here, probably) want to feel better and get my life back!   Sorry.... it's been a rough day.....     :(
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3242961 tn?1352116876
Hello Everyone!

I'm pleased to find this forum and hope that it can be helpful to me and I can be helpful to you all as well!

Just a little bit about my story: In Feb 2012, I went from working full time to being so ill that I could barely get out of bed, and would be totally exhausted with just trying to take 5-6 steps to get to the bathroom. Primary Care Doc did all kinds of tests and blood work, but other than an elevated SED rate (indicative of infection somewhere in my body), nothing could really be found. All the big ones were tested for: Lymes (2x), Diabetes, Myocarditis (infection in the heart muscle).... but all tests, except for the ongoing elevated SED rate, came back normal. In spite of normal results, I got weaker and weaker, and eventually lost the ability to walk w/o assistance- due to pain, tingling, "fire" in my feet and balance/gait problems.

March 17-22 I was hospitalized as Primary Care Doc thought maybe I had Guillian-Barre Syndrome, a peripheral nervous system disorder, but that has since been ruled out.

Since then I have been being seen by my PC Doc monthly as well as am being seen no longer by a local neurologist, but by a neurologist at a well- known teaching hospital. Long story "short"..... still no diagnosis, tho symptoms persist (but 3 mos of PT have gotten me back on my feet again w a support cane), new symptoms appear and testing continues to be done. I am having my 2nd MRI tomorrow both w and w/o contrast.

Neuro Doc has ruled out all peripheral nervous system disorders and says it definitely appears to be central nervous system related... (ugh). He is seriously looking at MS  from this next MRI and will compare it to the one I got in the hosp back in March.  I have a brain EEG scheduled for the end of the month, which Neuro ordered to check me for epilepsy, petit mal, I guess-though I've never had a seizure iin my life to my knowledge- and don't understand how that would cause all the other symptoms I've been dealing with.

From symptoms and research I've done (I also work in a hospital, tho am not a nurse/doctor, but have access to all kinds of med research) my husband and I would not be surprised at all if it does turn out to be MS.

However, this "mystery" illness is taking forever to get a dx for, which is why I'm glad to find this forum. Most of my friends can't understand my situation and (tho they'd never say it) I think they are sick of hearing about it, seeing me not better and struggling. It has caused some isolation, no, a lot of isolation for me! Again, another reason I'm happy to find you all!!

Ok... enough for now. I'm happy to answer (most) any questions anyone might have, and appreciate any support I can receive or give. My family and I continue to wait, pray and hope for a dx, and some possible treatment... but even we are coming to our whits' ends with all this!

Thank for taking the time to read and for being here!!   AmyKate73
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Avatar universal
dear gingerstidd,

i second mrsaristotle's theory that what you are experiencing may be sjogren's syndrome.  if you can get a referral to a rheumatologist, that would be your first step in either confirming or ruling it out.  there are specific markers they can test for, as well as possibly doing a lip biopsy to help with the diagnostic process.

i hope you feel better very soon.  we all know how it is.


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551343 tn?1506830518
Hi and welcome to our group. I have put your intro on the main board.

Can you tell us what symptoms you have?

I notice you have some interest in dysautomia. My brother has that.

Big and gentle hugs. Mariaxxx
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2792668 tn?1340126001
I've been fairly healthy up til 7 - 8 mo. ago, can't seem to get an MRI or find a Doctor that will do some deep investigating.  I'm frustrated but trying to stay positive. My symptoms are starting to get real bad.  I am on neurotin and it has helped slightly but symptoms are getting more intense so I don't know what to do.  Thanks
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2095501 tn?1333143266
Thank you.  Nice to meet you.
I saw a neurologist in December of last year.  My brain MRI was normal aside from some sinus issues (I had a sinus infection at the time).  That led to neurology passing me off to an ENT, who tested my balance crystals in my inner ear, because of the vertigo.  Those tests were also normal.
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