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Help? looking for ideas.

My story could last for days with regard to official testing, symptoms, family history..... but I am exhausted.... Tired of sharing with docs, trying to fix it on my own. I am not going to bore you with the gory details, but just give u simple symptoms, test history and current diagnoses. I need recommendations on a doctor that can get me treatment to improve. Sick of the doctor ping pong.... I feel  sure I will forget a few things, but just at my wits end. I know you r not doctors, but  I value your opinions from others suffering. Here it goes..stiff muscles years, diagnosed with Fibromyalgia, Primary Immunodeficiency, Chronic infections.... lung damage( 11 Nodules watching closely) Ace levels normal. Eventually tested and confirmed CVID. Worsening pain & stiffness. MRI’s confirm ddd, stenosis and hypertrophy. Dizziness, nausea, tremors, tripping on my on feet continue. Neurologist’s perplexed. Autoimmune tests normal. PT eval says gait and dynamic balance disorder. In Vestibular PT for nausea and dizziness, diagnosis 3pd. C Spine mri indicates demyelination. Brain mri indicates cerebellar Infarct. Spinal MRI indicated greater than 5 Oligoclonal bands in my CSF only...., no Lyme, no infection, no cancer,  I am in pain, struggling to walk, dysphagia off and on...tremors worsening.....Now Erythromelalgia diagnosis..... burning red face and extremities when overheated. Autoimmune tests normal except ANA. Blood Coagulation tests abnormal high. I would be interested in similar experiences that resulted in an answer. Any tests I am  overlooking? Ideas on how to improve? I have tried just about everything out there, including the latest. I am trying to or have tried. Looking for difficult cases that may have found the answer to improve wellbeing. Not curing, but improving situation. Also any doctor you know in the US that may have knack for puzzle solving neurological ailments?Yes, have spent a small fortune on Functional medicine and it helped get my diet straight and more helpful tidbits. Testing was so expensive and still in pain.Thoughts?
2 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

You honestly have so much going on it's hard for a lay person to get their head around it all, you've probably missed out a lot too, i will have a go at the ones that  stood out to me and hopefully it will give you some ideas.....

"Autoimmune tests normal except ANA"

ANA isn't associated with a neurological condition like MS, some alternative associated autoimmune diseases though would be lupus, scleroderma, Sjögren's, polymyositis, mixed connective tissue disease, autoimmune hepatitis there are others.

"Brain mri indicates cerebellar Infarct"

From my understanding when a brain MRI indicates a cerebellar infarct they are referring to a stroke, i'm unaware of another meaning...


"C Spine mri indicates demyelination"

Technically Clinically Isolated Syndrome (CIS) is when demyelinating diseases attack once and clinically involve only one region.

If the spinal MRI showed a large lesion that traversed the cord, the more common dx would be Transverse Myelitis (TM) both are associated with MS.

"5 Oligoclonal bands in my CSF only"

The presence of obands is generally suggestive of inflammation in the central nervous system, which is either infection or disease. If similar bands aren't present in your blood, multiple sclerosis is definitely possible when there is enough colective other suggestive-consistent diagnostic evidence of MS...but you have dx medical conditions that does cause infections so it may be related to what you've been dx with (ie Primary Immunodeficiency, CVID etc)

"Blood Coagulation tests abnormal high"

The only thing that rings a bell has to do with the automimmune condition Lupus, sorry but i can't recall where or why that specific condition springs to mind when i think of high blood coagulation test.

"have spent a small fortune on Functional medicine and it helped get my diet straight and more helpful tidbits. Testing was so expensive and still in pain"

I'd not heard of 'functional medicine' before and thinking it might be an American (i'm in ozz) i had to look it up and this is what https://en.wikipedia.org/wiki/Functional_medicine had on this topic....

"Functional medicine is a form of alternative medicine that encompasses a number of unproven and disproven methods and treatments.[1][2][3] Its proponents claim that it focuses on the "root causes" of diseases based on interactions between the environment and the gastrointestinal, endocrine, and immune systems to develop "individualized treatment plans".[4] It has been described as pseudoscience,[5] quackery,[6] and at its essence a rebranding of complementary and alternative medicine.[6]

In the US, functional medicine practices have been ruled ineligible for course credits by the American Academy of Family Physicians because it considers they may be "harmful" and "dangerous".[7][8]"

"CVID"
information: https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency

"PID"
Information: https://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease

I would suggest a pain clinic may be able to help you work out a better treatment plan that reduces your current pain levels. I would actually think you might get better infomation and support if you contact the related societies of each of your existing diagnosed medical conditions and ask for assistance.

Sorry i could be of more specific help......JJ
1 Comments
Thank for for trying! It is definitely complicated. I have been in touch the Immunodeficiency foundation and they were helpful. As you said, just so much going on. Just thought I would toss it out to the group and see if anyone had an idea. I may have had a  Isolated Incident with MS. The lumbar Puncture was negative for infections. I have seen three Neurologist’s and they do not believe I have MS, but not ruling it out. I have read that it could be several autoimmune . diseases. I appreciate you taking time out to respond! Best wishes.
Avatar universal
Symptoms of cerebellar infarct may include:

- dizziness
- headaches
- nausea
- vomiting
- double vision
- tremors
- vertigo
- poor coordination
- abnormal reflexes
- difficulty swallowing
- difficulty speaking or slurred speech
- uncontrollable eye movement

If a cerebellar infarct affected your motor skills and mobility, your doctor may recommend rehabilitation therapy: Physical therapy can improve your mobility, balance, and muscle function. Occupational therapy can improve your ability to perform everyday activities. Speech therapy can improve your swallowing and speech.
1 Comments
Thank you! I have many of those symptoms. I am in Vestibular PT in an effort to improve the symptoms. I hope it helps.
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