My story, my struggle, my relieve...?

General
21

Hello Hans,

Sounds as though you have more than one thing going on at the same time health wise. I was diagnosed with sporadic cerebellar ataxia (atrophy in my cerebellum/non-hereditary/unknown cause). My ataxia was diagnosed with an MRI (showed atrophy in my cerebellum) as well as numerous blood tests and a nerve-muscle test. The testing I had ruled out other things, therefore, through the process of elimination my diagnosis. I was diagnosed about 8 years ago and just recently had genetic testing for the known "recessive" ataxias, which was negative. I also had a blood test for gluten sensitivity, which also was negative. From what I gather though, the jury's still out on that one because many people are helped by going on a gluten free diet, even if testing is negative. My ataxia affects my balance/gait, dexterity, speech (slurred) and swallowing (coughing/choking). I also have achy joints, particularly in my hands My suggestion would be to see if you have any atrophy in your cerebellum. You mentioned you had MRI, but didn't say if neurologist looked for that. Also, stick with the gluten free diet to see if that helps, as it can take a while. Best of luck and keep site posted please!

22

Hans- Hi! Similarities for me: “left leg bends for no reason” (it was my right leg!), fatigue, disconnected feeling. B-12, Vitamin D deficiency. I was also very anemic. I am gluten intolerant or atypical Coeliac so I never had any stomach symptoms.

I want to ditto some others have said:

  1. Think Nutrition - it took me a long time to figure out that there is a big difference between a gluten free diet, and a healthy gluten free diet (you know - variety of fruits veggies and Lean protiens as well as being GF! Trust me, you will feel better all around and your insides and head work better.
  2. Patience! From some research I did last year for a graduate study class- it takes 6 months for your stomach to heal if you have damage from Coeliac Disease- so it may take a while for things to right themselves. Besides it took a long time for your system to get this way.
  3. You will find your own balance. I agree that Dr.'s are wonderful- but trust your own powers of observations and be your own advocate.
  4. Since you are starting on this journey, try keeping a symptoms/basic facts journal. It is amazing the patterns you begin to see out of random events. Try jotting down what you ate, meds you took, the weather, and your symptoms that day.
  5. You will have good days and days where you don’t want to get out of bed… But you can do this!

:slight_smile: Susan (22 years Gluten Free- 17 years since that right leg of mine stopped having a mind of its own!)

23

Hans, welcome to the group!

I read your story with great interest....your English is superb, by the way!

I have had every one of your symptoms and more besides. And after long tedious periods of diagnostic limbo and misdirection, my doctors and I believe we have finally figured things out. It's a complicated picture involving both infectious diseases and associated autoimmune reactions in me which seem to have been triggered by various types of bacteria and viruses.

My battle with serious illness began in 2004. It was such a mystery at the beginning. The story is a long one, I probably shouldn't post all of it here. If you are interested in all the details, here is a link to one of my blogs where I have written many of them down: http://lymetwistontherocks.blogspot.com/2010/10/warning-warning.html

I was diagnosed at a early age with two autoimmune diseases: Hashimoto's thyroiditis and psoriasis. But my psoriasis has always been fairly mild, and although my Hashimoto's has NOT, once I was diagnosed and on the proper thyroid medication, things seemed to be going well for me, health-wise.

After I became very ill, with many visual, muscular, joint, gastric and neurological symptoms as you have had, plus serious brain fog and memory loss, I saw a large number of doctors (rheumatologists, neurologists, hepatologists, gastroenterologists, internists, etc), and they diagnosed me with:

rheumatoid arthritis

autoimmune hepatitis

lupus

celiac disease

fibromyalgia

At this point I had 6 autoimmune diseases and fibromyalgia, which may or may not be an autoimmune disease. I found myself on high doses of prednisone and Imuran to suppress my immune system and prevent further damage to my organs, especially my liver. A liver biopsy was done, it showed Stage 2 liver damage.

Blood testing revealed that I have the HLA DQ8 genetic marker for celiac disease, although my biopsy was negative like yours. My neurologist agreed at that time that my ataxia was likely due to my gluten issues. I promptly went gluten free, and ended up with my entire family on a gluten free diet.

One of my friends in an online celiac forum was shocked at the number of autoimmune diseases I had been diagnosed with over a period of approximately one year, and suggested I should be tested for Lyme disease. She explained that Lyme disease can both mimic AND trigger various autoimmune diseases, including celiac disease, lupus, RA, ALS, MS, etc. I laughed at the idea at first, because it seemed so unlikely! I wasn't a camper or hiker, just wasn't "out-doorsy".

But I had several symptoms that were still unexplained, including severe lower back pain, so I finally agreed to get tested for Lyme and some of the "coinfections". NOTE: the blood testing for Lyme disease is currently VERY inaccurate and a negative test does NOT mean that you don't have Lyme, although a positive test means that you almost certainly do!

So I'm sure you've already guessed that I tested positive for Lyme, plus 3 other tick-borne diseases: Babesiosis, Ehrlichiosis, and Bartonella. The first two, combined with Lyme, may explain what happened to my liver in 2004. Babesiosis also causes night sweats and "air hunger", among many other symptoms, and both Lyme and Bartonella can actually re-program your immune system and trigger autoimmune diseases. Plus, Lyme is notorious for causing unexplained back, neck and joint pain.

I am not a doctor, so of course I cannot say whether or not you have Lyme or any other illness or condition; but I encourage you to read up on the subject, please! I also encourage you to try to find a "Lyme-Literate" doctor to check you over for Lyme. Lyme is a big problem in Europe as well as in the US, and the testing and treatment protocols are very out of date (most countries try to be in step with the CDC and the IDSA here in the US, which is not a good thing). Here is a link to an online group that may be able to help you find the right doctor in your country if you decide that you want to see a Lyme doctor: http://www.lymeneteurope.org/forum/

The bottom line is that I WAS eventually diagnosed with celiac disease, plus many other things, several of which can cause my ataxia and my vertigo and all of my other symptoms. But it's really quite complicated: I have 6 autoimmune diseases, at least 4 tick-borne illnesses, plus fibromyalgia, and very high titers of antibodies against the Epstein-Barr and Cytomegalo viruses. My doctors have me on two conflicting treatment protocols: long-term antibiotics and anti-malarial drugs (Babesiosis is related to malaria) to kill Lyme, etc. plus immunosuppressants to protect my organs from my own immune system. Hence it is very difficult for my weakened immune system to fight against the infections, I've been on antibiotics for nearly 3 years now. I have seen some improvement in my memory and concentration, but not as much as I would like.

Note: you might want to use Google to research the "politics of Lyme disease" so that you understand how difficult it can be to get a proper diagnosis and treatment in the US. I've heard that it can be just as bad in Europe, depending on where you are... not sure about the Netherlands.

Here are a few helpful links to get you started on the subject of Lyme and its symptoms, diagnosis, treatment, and controversies:

http://lymemd.blogspot.com/

http://www.anapsid.org/lyme/index.html

http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

Take care, and good luck in your quest for a comprehensive diagnosis!

JoAnn

24

I had the same experience reading an article about the English study. I had seen the term ataxia in some celiac articles and thought that would be me as I knew I had had some of the balance, tremor, and and gait issues since childhood. I was not diagnosed (biopsy) until my 40s. They missed me in childhood because I was "chunky" .+

When I saw what to me was a definitive article - I too said that is me!! I take primidone for the tremors but am not sure if It is of any help. At my age of 66 years not sure that I would have any long term changes....but having more information would be helpful. hope we both find more information!

25

Again; thanks everyone for the overwhelming reactions!

reading all the reactions i feel my condition is not all that bad. I mean; it could be a lot worse!! ;-) I will be posting some direct questions in a new topic. And i hope i can share some of my knowledge too.

26

Hi Hans,

You seem to have a positive attitude...that's half the battle, although I know at times it's not easy! Remember, we may have ataxia, (as well as other things) but it doesn't have us! :o) Looking forward to hearing more from you...

27

YES! All of this symptoms are what I was dealing with. I had no diarrhea just gas so it was very hard for doctors to even consider looking at Celiac Disease for me.

I was bed bound most of 2008 and I looked like I probably had Multiple Sclerosis. The MRI were normal. Fortunately, I had a Rheumotologist who was determined to find out what was wrong with me and kept running blood tests till Celiac Disease showed up.

I've been gluten free (GF) since Jan 2009 and have most of my life back. It took between 6 months to a year to see significant changes for me going GF. If I accidentally eat any gluten (even microscopic amounts) I have a gluten episode that causes a reoccurrence of all of those same symptoms for at least 3 weeks. Then a few more weeks of fatigue that keeps me home resting most of the day. My G.I. (you would say "interest") called doctor Dr Hadjivassiliou regarding my prognosis. Because I was over 50 when diagnosed and had been sick for many years I may never fully recover from the damage the gluten did to my brain.

I am unable to work because of Gluten Ataxia. Mostly because of the brain function issues (short term memory loss and speech problems).

You are wise to give your doctor the research from Dr. Hadjivassiliou. Doctors want to see the evidence from medical research, not patient stories.

You'll want to check your medications for hidden gluten. You will make mistakes on a gluten free diet, so give yourself permission. It's a a steep learning curve. Don't give up. I would expect that in a few months you'll be thrilled with the results. How blessed you are to know what is causing the ataxia and having a real solution. So many in this group don't.

I have to take Klonopin for the neuropathy. It makes it possible to sleep at night.

Keep us up to date on how you are doing.

28

Neuropathy seems a common symptom with most people here. I had strange unexplained pains and tingling in hands and feet. An EMG (naps and electric currents to measure guidance of the nerves) showed carpal tunnel syndrome in both hands. I disputed that diagnose because my little finger and ring finger were involved and that doesn't comply with carpal tunnel. And the fact that the problems were there all the time instead of typically at night.

A second EMG to proof my point showed no signs at all.. miraculous recovery? No way! I've noticed before that symptoms tend to come and go for no apparent reason. One day you're walking around like a young horse in spring time, the next day you're stumbling and waggling like an old donkey.

Things you ate, stress, fatigue, mood, etc. they all play a role in this i gather. I'm just not entirely able to find the pattern in it all. If my (alleged) neuropathy plays up i take a Tramadol. Plain aspirin or paracetamol do nothing for it and the NSAID's are forbidden with microscopic colitis.

29

Most of my symptoms come and go as you have described (I also have fibromyalgia and it does the same thing). I have found that stress plays a huge factor.

30

Hi Hans,
I have been diagnosed with C.A. And exhibit a few symptoms similar to yours. I have a slight increase with my LDH and CPK levels. I have disc bulge in all the discs! No strength in my toes and they are loose and hanging. On account of this I have foot drop. I have an ok balance but cannot Stand without support. I use a cane and only mobile indoors. I am on trigabantin, vitE, IDEben. No one tested me for gluten. I do experience acute pain in my hips particularly during nights but seem to be settling! I am on homeopathic medication for muscle and nerve strengthening. Wishing you the very best.

31

Hi Nan, did you ever try magnesium substitution? I don t have pain in the hips, but in the feet and legs, and magnesium helps me. I take 600 mg per day in tablets and granulate, this last mentioned in the evening. Which helps. And now extra Vitamin E which is said to help the body to uptake the magnesium. There is a self - help group in Berlin, lead by a medician, for mineral imbalancies, - sometimes a supplementation of 1000mg / day lifelong is necessary, following the opinion of this doctor. But seemingly mg does not help everybody..

http://www.magnesiumhilfe.de/index.php?q_lang=de

Kind regards, Margarete

32

Thank you everyone for sharing on this board. It is amazing to hear perspectives from people from all over the world. Some new info, and some confirmation of things that work for me (and are not in the medical literature).

33

As far as i know the CRP shows only the bacterial infections, not the infections by virusses and fungal infections....

Hans said:

Thanks for replieing,

My crp levels are within tolarable values, which was suprising with two active inflamations and a fungal infection.. The candida is known to be common in patients treated with immunosuppressents such as steroids. Mine is under controll now thanks to yet another medicine. (nice idea all these chemicals in one's body... Not!)
Neither the emg nor specific blood markers showed signs of myopathy. The same goes for diabetes, reuma, lupus, hodgkins, kahler, well basicaly every posibility that fits certain symptoms has been checked and found negative
34

Hi Atika,

CRP is just a marker for infections, it doesn't distinguish between what sort of infection or the cause of the infection. But there is a difference in the hight of the value; bacterial infections tend to give higher counts than auto-immune or fungal infections. I'm not trying to be mr. know it all, I might be mistaken, it's just that this past year i've read so much about medical stuff that it feels like i know things ;-)

35

http://www.nlm.nih.gov/medlineplus/ency/article/003356.htm

.. You are right. CRP indicates inflammation. I was so long stationary and got the wrong answer as a minimum twice.

Kind regards Margarete

36

Afterwards i want to add, that in my view a supplementation with magnesium should be accompanied by a doctor, because there are possible side effects, like diarrhoa. For me one sachet of Magnesia per day actually would be already too much. I take this only in the case when i get symptoms/cramps/pains in my legs, because of negligent too low intake of the Magnesium Verla Filmtabletten (i ve got a low compliance when i do not experience cramps for a while).

Magnosolv Brausetabletten are relatively cheap in Austria, but have to be prescribed by a doctor.
Magnesium Verla Filmtabletten can be bought without a recipe. Actually i am taking 2 - 4 tablets per day. There havebeen times with up to 6 tablets to prevent the cramping plus a granulat. Today my symptoms are fewer which i suppose is depted to Wellvone/Atovaquon, twice daily 5ml - 750 mg.

aAkita