Help!

[ajckie]

Sorry if it's a bit lengthy! Over the past year and a half, my health has really deteriorated. Before that, I was a pretty healthy person. I had some difficulty with being tired and was achy (was told it was fibromyalgia, no meds helped), but otherwise good. Now I'm 27 and a complete mess. Over the past 1.5 years, I have developed these symptoms (and probably a few others that have come and gone): muscle aches (deep pain, stiff muscles), fatigue, difficulty sleeping (not feeling rested even when I do), feeling forgetful/foggy/poor memory, nausea (ranging from mild to so severe I've got 2 weeks without eating and am frequently unable to even move an inch), dizziness, decrease in balance, some headaches (briefly treated for migraines -- all the way up to botox tx, Neuro. decided it wasn't migraines after all tx. failed), pain in right eye (painful to move, often with headache), occasional flickering in vision, decreased sensation/tingling ranging to complete numbness in: left side of face, bilateral knees, bilateral arms all the way down to fingers and left leg all the way down to toes, limbs feel tight, heavy and stiff, skin feels itchy and crawly. All of these symptoms come and go, but have become more frequent and lasted for longer periods over time.
     I have seen my primary, a GI doctor, a neurologist who referred me to the Cleveland Clinic where I've seen an internist, a neurologist, a neurotologist, a GI doctor, a GYN and am now off to a cardiologist and another neurologist. Every doctor has believed me and shown concern, but has not been able to come up with a diagnosis.They keep telling me that it may "take a very long time to discover my diagnosis." My frustration is that most doctors have looked at my medical records and decided that previous doctors were thorough. I had an MRI done of my brain in Feb. 2011 that revealed a mild chiari malformation, but no MRI since and never of my spine. I had autoimmune blood work done when I first presented with pain and fatigue in 2004, and they have decided there's no need to repeat.
     A family friend recently suggested MS to my mom, since her symptoms were similar when she began dealing with the disease. Does this seem like a similar course to anyone else? How hard should I push when I see the new neurologist? I don't want to be a nagging patient or seem like I'm self diagnosing, but I cannot go on like this anymore. I have no life, I barely leave my house, my husband frequently has to pick me up off the floor and bring me to bed because I'm too sick to move. He's had to put me in my pajamas because I couldn't even change my clothes. It's embarrassing and frustrating and depressing. I can't work or be a functional human being anymore. I have gotten in the shower and found myself too tired or nauseous to even wash anything. I need advice!

[Ricobord]

You story sounds like a lot of other people with late stage Lyme Disease, including the part about going to numerous "good" doctors who cannot diagnose you. and ou are in one of the most Lyme endemic states in the U.S.

I am so sorry your friend has played the "psych" card.  Usually Lyme patients get that from a doctor, who then refers them to a psychiatrist. The sad part is that Lyme can also cause neuropsychiatric symptoms, especially anxiety. In this case, the illness also causes anxiety.  I suspect your friend doesn't want to believe that you could truly be that sick without doctors knowing what it is.  It is an ongoing nightmare for many Lyme patients.

Please find an LLMD, a Lyme Literate Medical Doctor associated with ILADS, who knows the disease well, and also knows how to make a clinical diagnosis when necessary. Blood antibody tests are unreliable, so a negative does not exclude it. LLMDs also know about some additional tests that can help determine if you have it, such as a CD57. (Note: I tested false negative twice. I finally tested positive at IGeneX, a specialty lab.)

In the meantime, there are some things you can try to see if they help you feel a bit better.  Going gluten free will help ease GI distress and brain fog. It took me about 7 days to feel the difference and it was noticeable!  Take magnesium supplements (work your way up to 200-300mg twice a day, 600mg/day total - use one ending in -ate), epsom salt baths (absorbs magnesium directly into the skin), D3 supplements, and if your GP will prescribe them-methyl B12 shots. If not, then get some sublingual B12 at a health food store. Lyme can cause various deficiencies, but magnesium and Vit D seem to be almost standard.

See if you or your husband can get a copy of the documentary "Under Our Skin." You can always order it online directly from the producers if you can't find a copy to rent.  You sound a lot like a young woman featured in the movie. Perhaps you can convince your friend to watch it, too.

Please come post on the Lyme forum. We have a very supportive group there.

[ajckie]

Hi guys,
Max: I have had testing for gastroparesis (that emptying study was the worst) and basically the full gambit of GI testing; and endoscopy, testing for celiac, tried a ton of meds (reglan, zofran, bentyl), all with no result. The GI is the one who did the brain MRI and found the chiari malformation and referred me to the neurologist.
As for the chiari, the radiologist's report said "not significant," and every doctor has looked at that and said that it couldn't be the problem. I'll definitely bring it up when I go to the new neurologist. I think that I might not bring any of my medical records when I go so the new doctor has nothing to fall back on. Reading the records and doing nothing else, or only 1 test and giving up, seems to be pretty common. I just know I can't go on like this forever. I'm ready for a solution, or at the very least, just an answer.
I had a conversation with a friend of over 15 years yesterday about why she has been so distant. It turns out that she's decided that if none of the doctors or specialists have been able to figure me out, that I need to come to terms with the fact that it isn't real/all in my head. "What is it? Your own disorder, the first of its kind!?" and that I should be at work because it isn't fair to my husband to have to work so hard. It's heart breaking to see someone who has been through so much with me suddenly walk away because of something that is so out of my control. I'm not sure why she thinks she has some expertise that the specialist's don't, the doctors who believe me, have never suggested anything other than a medical reason and who say that diagnosis often takes lots of time. But she's decided that my timeline has been enough and apparently 15 years means nothing. Sorry for the vent, but even people who are supportive can't understand the frustration until they've been in our shoes; living with something like this with no answers in sight.

[bagheesmom]

My story is similiar to yours, I was also dx with Fibro years ago and then an MRI of Feb 2012 showed a Chiari Malformation and I started researching, believing that could be the cause of my symptoms. What I learned is that many dr's dismiss Chiari so it is very important to see a Chiari specialist. I saw one in June and found out this was not the cause, now my tests, MRI, LP, EMG and bloodwork and symptomsI are all pointing to MS. So my journey continues! IMHO you really need to see a specialist about the Chiari and then move forward from there. Best of luck to you :)

[Red_Star]

When i read your symptoms i immediately thought of Chiari Malformation so it was no surprise when CM was mentioned in your question.  A standard MRI - sagittal (side) view is used to help identify Chiari 1.  A cine (stands for cinema) MRI helps to determine the amount of cerebrospinal fluid (CSF) flow. Cine MRI is also used to diagnose borderline or Chiari 0 (no herniation seen on standard MRI).

The CSF flow is the cause of the Chiari symptoms.  There is no correlation between the length of herniation and symptoms or prognosis. In other words, a "mild" Chiari showing up on an standard MRI can cause severe symptoms due to partial or complete CSF blockage on a cine MRI.  You have seen plenty of doctors but the one you really need to see is a Chiari specialist.

Doctors list for Chiari/Syringomyelia:
http://www.medhelp.org/tags/health_page/39830/neurological-disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA?hp_id=1062

Unofficial Symptoms List:
http://www.medhelp.org/posts/Chiari-Malformation/Unofficial-Symptoms-List-/show/1192372

[maxthecat43]

In addition to the other neurological testing, have they tested you for gastroparesis?  It does sound like it may be neurological, but your doctors are right to warn you that this may take a while to figure out.