Sick for a year and still undiagnosed

I am not sure what my official diagnosis will eventually be but I have been so sick for over a year now. It started basically in July 2011 but I did not go to the doctor until September 2011. I noticed a knot in my right groin area and it was really painful and swollen. I went to the doctor and he ordered a CT which showed that I had enlarged lymph nodes. To make a long story shorter than it actually is...After three rounds of strong antibiotics with no results the doctor recommended surgery to remove three lymph nodes. From there I started feeling extremely fatigued all the time, low grade fevers, often had trouble breathing, dizziness, shortness of breath, pain in spinal area of my neck, face and hands swelling, eyes aching a lot with a lot of pressure behind them, muscle weakness, sore and swollen lymph nodes, left side muscle weakness to the point that my arm would just drop while I was washing a window or my leg would not pull me up the steps. In May of 2012 I started noticing even more disturbing problems and from there things got a lot worse. I couldn't remember things, I even forgot my own name and there were times when I would look at my husband and didn't recognize who he was, I had numbness on my left side and tingling sensation as well, I had a lot of pain in the back of my head (not "headache" pains but more like on the surface and in the muscles in my scalp), my left foot dropped and I could not speak at all. Over the past year the symptoms have not improved for the most part some have even gotten worse...I have short-term memory loss, muscle tremors (in both arms but most especially in the left, I began taking Carbidopa-Levodopa medicine for the tremors and it does help significantly though even when the tremors are not visible on the outside, I can feel the muscles jerking on the inside of my left arm almost constantly), I cannot drive because things "flying past me" makes me disoriented and nauseated, blurry vision often, I get nauseated when I concentrate on something too hard or try to read, sometimes when I read my eyes jump around or the words seem to scramble on the page or screen, I cannot close my eyes while standing (if I do I will fall backwards), my throat muscles, mouth, jaw, and tongue muscles tire out easily often times making it hard to chew my food or swallow, I have a lot of cognitive problems where I cannot even solve simple word problems or anything the involves a lot of thinking to figure out, pins and needles pain in left cheek as well as some numbness there, I have a lot of pressure behind my eyes and in my head, off balance a lot, trouble breathing at times (feel very short of breath), I get nauseated when I stay up late or “work my mind” too much during the day, neck muscles feel very weak at times, and several other symptoms.

I’ve had 3 MRI’s, 2 CT’s, a lot of blood work, A Spinal Tap, EEG, Heavy Metals Testing, and more and more blood tests. I have been given sooo many different POSSIBLE diagnosis…From Stroke, MS, Migraine Headaches, Lyme disease, Lupus, rheumatoid arthritis, a blood disease, severe depression or anxiety disorders (though I tried to express to them I am not depressed or anxious about anything) and then they moved onto a few “mental” disorders (because they can’t find a diagnosis and all of my tests have come back negative) with a couple of doctors telling me that there was nothing wrong with me neurologically and that I needed to see a psychiatrist. Most recently we have been told that “It could be Conversion Disorder” (which is highly unlikely since it has been going on for over a year now BUT, that doesn’t change the doctors mind from looking at that as a possible diagnosis and thus refusing to consider any other option) OR the latest from my family doctor (at least this is what he said to me though he requested I see a psychiatrist, which I agreed to do) “It could be Chronic Fatigue Immune Dysfunction” ….etc. etc. etc. I have been trying to do some research myself and have had several friends send me their “maybe you have this…” with articles attached. Today I received one such email from a friend with the link to Gluten Ataxia Research. I read the article and well, here I am. My symptoms fall under so many possibilities (especially MS, or another neurological disorder, CFIDS, and this Gluten Apraxia) and one of those possibilities is the Gluten Ataxia. However, I really don’t know where to turn. I have been to 3 different neurologists, a rheumatologist, Oncologist, as well as my primary care doctor and even one Psychiatrist (who was more focused on my childhood and what might have happened to me as a child and suggesting that my past has caused me to be depressed, even though I may not be aware of it and thus causing these physical symptoms now after all of these years, therefore putting me on an antidepressant medication). I tried to explain to him that IF I am depressed it is BECAUSE of my symptoms and the fact that no one has been able to tell me what is going on with my body NOT that I am depressed and that is what is causing me to have these symptoms! So, anyway….I am here to get some support and some possible insight. OR a recommendation pointing me to a doctor who may help. The only thing that has gotten any better is my speech. It began returning to normal last week and within the week has fully returned to normal with only an occasional slurred word or two.

I have never been an exceptionally healthy person….Being diagnosed with asthma, several allergies, IBS, reoccurring yeast infections, ganglion cysts, Mitral-valve Regurgitation, fibroid-adenoma tumors, and other health problems over the course of my 40 years. BUT, NEVER have I had the health issues that I am experiencing now.

Help…anyone??

Hi, and welcome to LWA :-)

I'll post a longer reply later. But one quick point to make is that I think you've already got a diagnosis. The fact they've tried you on Levodopa suggests at least one Doctor suspected you have Parkinson's Disease. The fact that you've responded to it virtually diagnoses Parkinson's (early onset, even before age 40, occurs in at least 1 in 10 cases. 1-in-300 Americans have it).

It can take some months for some symptoms to respond to Levodopa, once the dose is right. You say the tremors (yes, there can be internal ones too) responded quite quickly, and more recently your speech came back. Maybe the Levodopa is working, you just need a higher dose.

The tests are to rule out other causes, from MS, to brain tumours, and many others, which they've done, which is good. And in the early stages, Parkinson's shows a normal MRI: it can take years, even a decade to see any change on MRI. So, next test is to try Levodopa.....

That, together with your Neuro symptoms, and Levodopa response, all says Parkinson's.

See your Doctor again to show him your speech improvement, and confirm all this. At least now they can't say "it's all in your head", nor blame some "childhood trauma" :-)

Abs :-)

It all sounds so familiar. Stay strong. Do not take antidepressant unless u think u need them. I swear, they just wanted to shut me up and make me go away. When I asked for a cane, my doctor said you are kidding, right! I wasn’t.

Did you have any of these symptoms b4 taking antibiotics. What kind of antibiotics were they? Were they intravenous? Some antibiotics can cause ataxia. That was me. What about the meds u mentioned can they cause ataxia also. U need to do the research yourself and present it to them. Chemical induced ataxia can be completely reversed or at least a huge improvement. Put in the word ataxia and all the meds u r taking and see what u come up with.

Why were your lymp nodes swollen?

Best of luck and keep us posted

We have quite a few folks here with Gluten Ataxia. I am one of them. My suggestion is get the blood work for Celiac Disease right away. Before going gluten free.
Your symptoms sound very familiar. Ataxia takes many forms.
Very few doctors are familiar with gluten Ataxia. I can’t tell you how my doctors I had to explain it to. And then they give me the look…
I’d suggest going here http://www.celiac.com/articles/277/1/United-States—Doctors/Page1.html
To find a good celiac doctor. Many GI don’t test propery. Ie. they send to unreliable labs.
Keep in mind, you can still be gluten sensitive without having celiac disease.
And you can still have gluten ataxia without having celiac disease.
I never experienced typical celiac disease symptoms. Yet my guts were a mess. That was in January 2009. Since then I have gotten most of my abilities back unless I have a gluten episode.
Additionally I would request a brain function test called a neuro-psych exam. This test has nothing to do with mental health. All of this before going gluten free. You will need the results of these test if you find that you do in fact have celiac disease and gluten ataxia, in the future.
Take care and know that you have friends here.

This is a very good point as this has helped me also. I think many of us are gluten sensitive. It has helped my symptoms tremendously, no gluten yeast or soy for me. Initially I had stopped sugar too and that helped to. You can eliminate and then gradually add things back and see how u feel. This really worked for me. It is best to get the test first but I could not wait to try as I was desperate for answers. I gave up caffeine and that really helped

Dear Sick Of Being Sick, The advice from others sounds very helpful! I have Sporadic Cerebellar Ataxia (unknown cause), as I was diagnosed 10 years ago, through the process of elimination. My cerebellum shows atrophy, which is a clear sign of ataxia. As you know, there are many different neurological disorders which cause ataxia symptoms, as well as several different types and degrees of ataxia, some hereditary, some not. You sound as though you are dealing with many different symptoms, many that I have not personally dealt with. My symptoms of ataxia are gait/balance, dexterity, speech and swallowing, 24/7. Anyway, you are not alone in your journey! This site is wonderful for support and understanding! I hope you find out specifically what's wrong soon! Wish I could be more helpful...,;o)

Wow. I wish you could see my neurologist. I have an extremely rare neurolgical disease called olivopontocerrabellar degeneration. My first visit he told me it could be one of two things, he needed a MRI to confirm and he was right! My cousin has had it for over 20 years and she's never had a diagnosis, she's never found a doctor who could give her one. He also found my cancer when it was just barely there.

He's in Washington, I'm not sure where you live... I'm so sorry you're going through this. Jackie

Hi Sick of being sick

I had antibiotics too for a long chest infection.My CA developed suddenly about 7 years ago..Prior to that I didn't have any physical symptoms.I did have depression on and off for years.

It would be so nice to have a label but there are quite a few of us with CA of unknown cause and the symptoms seem to vary.

Dad also had early onset Parkinsons but I suppose they are all neurological diseases amd there are some similarities and other symptoms that are more unique in Ataxia.Even among the Ataxias there is great variety and causes.

Sounds as if your doctors are confused and stabbing in the dark.As long as they are listening and doing various tests they will do things by a process of elimination. That is why it seems to be taking a long time.Good luck with the diagnosis.

Marie

one thing about reading this post is that i realize how blessed i am. i have an ataxia. the dr said he "thinks" it is SCA3. i do not fit all the specifics, so i really don't know what i have. one thing i can do is pray for you. i serve a God who is able to do "exceedingly and above anything i ASK, THINK, OR BELIEVE." if i had no relationship with Him, i do not know where i would turn. He is my loving, giving Father who cares about me. i will pray.

Actually the doctor only perscribed Carbidopa-Levodopa Medication AFTER I talked with my therapist and she recommended it to me and I asked my doctor to at least try the medication to stop the tremors. I have had doctors tell me that they were almost certain that I had MS, one doctor was positive that was what I have but yet when the tests all came back normal (with the exception of a few "white matter" spots on the brain....though they said that there weren't enough to diagnose it as MS) Anyway, when the MRI and the Spinal Tap came back without a clear diagnosis they started saying that maybe it is all in my head and that perhaps some childhood trauma was casing something called "Conversion Disorder". ....I am still searching and going to a GI doctor June 3rd to talk to him about possible Gluten Sensitivity and Gluten Ataxia. I still have hope that someone will be able to help me find an answer soon. I have something called the BAabinski Sign which proves that something is wrong wither in the brain or the spinal column. They said that IF it is a problem in the brain it must be too small right now for the MRI to detect. SO, they are suggesting that I just wait it out and see if the symptoms go away on their own or get worse within the next year.

Abby_UnknownCA said:

Hi, and welcome to LWA :-)

I'll post a longer reply later. But one quick point to make is that I think you've already got a diagnosis. The fact they've tried you on Levodopa suggests at least one Doctor suspected you have Parkinson's Disease. The fact that you've responded to it virtually diagnoses Parkinson's (early onset, even before age 40, occurs in at least 1 in 10 cases. 1-in-300 Americans have it).

It can take some months for some symptoms to respond to Levodopa, once the dose is right. You say the tremors (yes, there can be internal ones too) responded quite quickly, and more recently your speech came back. Maybe the Levodopa is working, you just need a higher dose.

The tests are to rule out other causes, from MS, to brain tumours, and many others, which they've done, which is good. And in the early stages, Parkinson's shows a normal MRI: it can take years, even a decade to see any change on MRI. So, next test is to try Levodopa.....

That, together with your Neuro symptoms, and Levodopa response, all says Parkinson's.

See your Doctor again to show him your speech improvement, and confirm all this. At least now they can't say "it's all in your head", nor blame some "childhood trauma" :-)

Abs :-)

Most of the symptoms were not there when I started the antibiotics but a few were...the fatigue, the muscles had started weakening around that time, head pain, neck (spinal area) pain, etc. AND they only thing that they said about the lymph nodes being swollen was that the biopsy just showed infection. .

Phoebe said:

It all sounds so familiar. Stay strong. Do not take antidepressant unless u think u need them. I swear, they just wanted to shut me up and make me go away. When I asked for a cane, my doctor said you are kidding, right! I wasn't.

Did you have any of these symptoms b4 taking antibiotics. What kind of antibiotics were they? Were they intravenous? Some antibiotics can cause ataxia. That was me. What about the meds u mentioned can they cause ataxia also. U need to do the research yourself and present it to them. Chemical induced ataxia can be completely reversed or at least a huge improvement. Put in the word ataxia and all the meds u r taking and see what u come up with.

Why were your lymp nodes swollen?

Best of luck and keep us posted

I completely agree. God is Sovereign and I trust Him. He made this body and He can heal it if He so chooses too. I have been learning through my journey that He is ALWAYS there. He will never forsake His children and I am soo grateful for that. I don't know how people cope with everyday life without Him, let alone a serious health problem! Thank you for your encouragement and prayers!

Ive Fallen said:

one thing about reading this post is that i realize how blessed i am. i have an ataxia. the dr said he "thinks" it is SCA3. i do not fit all the specifics, so i really don't know what i have. one thing i can do is pray for you. i serve a God who is able to do "exceedingly and above anything i ASK, THINK, OR BELIEVE." if i had no relationship with Him, i do not know where i would turn. He is my loving, giving Father who cares about me. i will pray.

The fact that most of of your symptoms appeared after having taken antibiotics is interesting. Have you tried taking probiotics? I believe it’s essential to do anytime someone takes an anti-biotics. Buy the best probiotic you can find it That’s in the refrigerator section At a store like whole foods.



Sick_of_being_sick said:

Most of the symptoms were not there when I started the antibiotics but a few were...the fatigue, the muscles had started weakening around that time, head pain, neck (spinal area) pain, etc. AND they only thing that they said about the lymph nodes being swollen was that the biopsy just showed infection. .

Phoebe said:

It all sounds so familiar. Stay strong. Do not take antidepressant unless u think u need them. I swear, they just wanted to shut me up and make me go away. When I asked for a cane, my doctor said you are kidding, right! I wasn't.

Did you have any of these symptoms b4 taking antibiotics. What kind of antibiotics were they? Were they intravenous? Some antibiotics can cause ataxia. That was me. What about the meds u mentioned can they cause ataxia also. U need to do the research yourself and present it to them. Chemical induced ataxia can be completely reversed or at least a huge improvement. Put in the word ataxia and all the meds u r taking and see what u come up with.

Why were your lymp nodes swollen?

Best of luck and keep us posted

i thought of something after my response to you. i hope i didn't come across as "mr superspitual." that was not my intent. it seems that many christians want to make others feel small. i always have someone who feels more spiritual because they are healthy. i had a friend who became my pastor tell me i "needed to trust God." after staying on me he developed the same problem and still suffers the effects. i do not point fingers nor do i think i have all the answers. i don't know but i know WHO DOES! i just want you to know that i am praying that you will find someone to help you. i feel your problems are physical. the answer is in your body not your mind. please keep me posted. someone is going to have the answer and i feel it is going to be soon. again, i pray His blessings on you and your family.

Sick_of_being_sick said:

I completely agree. God is Sovereign and I trust Him. He made this body and He can heal it if He so chooses too. I have been learning through my journey that He is ALWAYS there. He will never forsake His children and I am soo grateful for that. I don't know how people cope with everyday life without Him, let alone a serious health problem! Thank you for your encouragement and prayers!

Ive Fallen said:

one thing about reading this post is that i realize how blessed i am. i have an ataxia. the dr said he "thinks" it is SCA3. i do not fit all the specifics, so i really don't know what i have. one thing i can do is pray for you. i serve a God who is able to do "exceedingly and above anything i ASK, THINK, OR BELIEVE." if i had no relationship with Him, i do not know where i would turn. He is my loving, giving Father who cares about me. i will pray.

Hi again Julie :) Actually I take probiotics every day after lunch and dinner. I have a lot of stomach problems (IBS was the diagnosis for that years and years ago) so, if I don't take probiotics and sometimes enzymes, my stomach hurts so bad at night and first thing in the morning that I can hardly stand it.

Julie Hahn said:

The fact that most of of your symptoms appeared after having taken antibiotics is interesting. Have you tried taking probiotics? I believe it's essential to do anytime someone takes an anti-biotics. Buy the best probiotic you can find it That's in the refrigerator section At a store like whole foods.



Sick_of_being_sick said:

Most of the symptoms were not there when I started the antibiotics but a few were...the fatigue, the muscles had started weakening around that time, head pain, neck (spinal area) pain, etc. AND they only thing that they said about the lymph nodes being swollen was that the biopsy just showed infection. .

Phoebe said:

It all sounds so familiar. Stay strong. Do not take antidepressant unless u think u need them. I swear, they just wanted to shut me up and make me go away. When I asked for a cane, my doctor said you are kidding, right! I wasn't.

Did you have any of these symptoms b4 taking antibiotics. What kind of antibiotics were they? Were they intravenous? Some antibiotics can cause ataxia. That was me. What about the meds u mentioned can they cause ataxia also. U need to do the research yourself and present it to them. Chemical induced ataxia can be completely reversed or at least a huge improvement. Put in the word ataxia and all the meds u r taking and see what u come up with.

Why were your lymp nodes swollen?

Best of luck and keep us posted

IBS is a very common misdiagnosis for Celiac Disease. I look forward to hearing about test result for Celiac Disease assuming you pursue that.

It may not be related at all, but I have to say, it sure sounds like gluten ataxia.

Take care!!

Wow!!! The way you have explained your situation reminds me of when I explained mine. Your sympton's so remind me of what I wrote about. It is a scarey feeling I know.

You know I have to be honest with you. I was diagnosed in 2010 and to find someone who for sure knows what would help is asking for a miracle. In our situation the only one who helps is God. But there is not one person that can say that medically they are helping us get cured. I see doctors only once a year for this Ataxia and here's why. Once a year gives the doctor the chance to see how much you have changed in a years time. That is it. There is no meds to make this better and no plan for the future to make life easier for us. It is of no use to this life as it is not ever changing. I've read so many people say they've tried this or that but yet are they cured? No!! We really need to realize to take control of ourselves and understand that it is what it is and deal with it.

I am not trying to be cold on this subject. I just believe it is best to tell it like it is and get on with it. Do what you want to do now cause later you may not have the good health to accomplish some things you want to do in life. In two years time I went from walking normal to walking with a 4 wheel walker. I have to hang onto the bars at all times to keep from falling. Already have taken two spills hitting my head very hard but without damage taking place. I give credit to many who try this or try that but the problem with that is that it can become very costly. To each persons choice. At least they are trying and keeping busy. I know that I did not give you answers to make this right but I feel hearing the true facts on how to handle this situation. It's a personal choice to make. Get on with life and enjoy it or try with others to come up with solutions that may be of help.

Myself I plan to not get all caught up in the what if or maybe's of how to get results for a cure. Ataxia has been around for a long time and from my understanding there is not a cure even close to coming about.

Please understand that we all have our opinoins on what to accept. I only like to talk about this if someone in public ask me what my problem is and I will give a brief answer to satisfy them. As time goes on my answers will be given by others I am sure. I don't plan to live life wondering and repeating my maybe this or what if that. It is what it is. Things will be handled on a day to day situation. Because Ataxia is so unpredictable and not one of us has it exactly the same.

Here's wishing you well and I hope you don't take me wrong with my opinion. You will decide your way and I hope most of all you keep a positive attitude. This helps a lot. Just be happy!!!

I think I am in the same boat as you Vickie.It's no use looking back or forward.

I am struggling with the change from mobility to immobility. I am not adjusting very well as in the past my hobbies were walking,gardening and talking socially.I cannot do any of this list now because of my Ataxia so I have got to find a new set of things to do.

The Neurophysiotherapist has tried adaptions but I am too poor for that.

With the gardening I now squash and drop everything.It is so frustrating..

Someone once said on this website focus on what you can do rather than what you cannot.

That has helped but my mind seems to go all over the place.

I hang on to my walker and have just made the change from lurching to needing help for the basics. I suppose looking back at past is a characteristic of a progressive disease.I catch myself doing it but it is not helpful.

You are right Vickie about doing things now rather than later.There is so much paraphanalia to take now.It was so much easier when you could just walk to a car and get in.But some have it worse than us. Can't think of many but at least I have still got my arms and intelligence !! I try to have a positive attitude but struggle.

Thank you all so much for your thoughts on this. I am a Christian....I trust the Lord and know that His plan for my life may not be exactly what I would have planned it to be BUT, He is Sovereign, He is good, and He is God. NOT ME. I love the Lord with all of my heart and I trust Him with this body. Afterall, who is there better to trust than the ONE who actually made it? ;) I do at times find myself in the "What if" or "What is wrong with me!" category. And unfortunately I do find myself looking back and mourning for the things that I used to be able to do with my family and cannot do anymore. I am learning to trust the Lord more with my health as well as every other part of my life. I have been finding myself in the "Repentance Corner" a lot lately. LOL ;)

I have my speech back and for that I am soooo thankful. Most of us don't realize how much we take forgranted in this life until it is gone. I am grateful for what I do have. I can walk with a cane and not be in a wheel chair which is where I was at last year around this time. I still have a LOT of trouble with my mind (memory, confusion, inability to understand things at times, etc.) BUT, I am still able to take care of my family and my children are Homeschooled! I cannot help them with much of their work now but I have a son who is graduating this year and he is home with me most days so anytime that the two younger ones (13 and 15) need extra help I can call on him to assist. God is soo gracious to me.

I do have an appointment to see my GI doctor next month but I have called today to see if I can get in to have the Upper GI Scope scheduled before the appointment. If that doesn't come back positive for Gluten Sensitivity or Gluten Ataxia, well, then I will just take it that the Lord may not choose to reveal to me what I have going on. His timing is perfect, though I'm sorry to admit at times I get a bit impatient.

I guess the most frustrating part is having people look at you as if you are "making all of this up" because there are no tests coming back positive for anything yet. Perhaps that is just pride in me, not wanting to look like I am "mental" to others. hmmmm....

Thank you all again for offering your thoughts and encouragement to me. I do need to learn to love the life that I have been given and to not live it looking at what it used to be or what I wish that it were. God has been very kind to give me life and I should be more grateful for it.

I have been to 7th Neurologist and not one of them has come out and said "You have Ataxia, Parkinson or anything else".

Finally a therapist said maybe your Cerebellum Cells are dieing off to quickly which makes you weak, tremors, cannot walk without a rollalator, sometimes cannot even walk, hands shake when trying to feed myself, cannot stand without someone holding on to me, headaches, poor vision. I told my last Neurologist this and he said that probably is right come back in 4 months to see how you are doing. I have had these symptoms since 2006. I also passout without any warning and fall.

I am 82 years old. Does anybody know the life span of somebody with Ataxia?