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Illusive Diagnosis, Pain Increasing
Bones, Joints & Muscles | Last Active: Sep 3, 2023 | Replies (39)Comment receiving replies
Hi I think I have it! No you are not crazy, it is not all in your head, and you are not alone. You are a warrior and deserve to be joined by an army of warriors. And you just have been. Welcome to the war for truth and treatment for CRPS, in my humble opinion. (At just one of your conditions as I can see.)
First, let me outline your history as I understand it.
1. Where it so began: 1998: a viral, fungal, or protozoan infection, tick fever or something like it— hard to identify and even harder to cure lasting 6 months.
2. DX or mis-DX: Chronic Fatigue Syndrome due to the recovery cycle of infection and false positive of an anti-DNA test to match any foreign body within the system.
3. DX: Lupus after prolonged illness, TX with Plaquenil for 2yrs, stopped in 2yrs, DX reversed and changed (Rheum)
4. DX: Multi-connective Tissue Disorder - REVERSED (Rheum)
5. DX: Metatarsalagia SX: Big Toe Pain, progressive to remaining toes and ankle leading to instability when walking and increase TX: Ibuprofen, orthotic shoes (Pod)
6. DX: Muscular edema (dystrophy) with no injury PCD: MRI (Pod)
7. DX: Foraminal Stenosis at L5-L1 (mild) PCDs: EMG no, MRI of back (neuro)
8. DX: confirmed negs of Lupus PCD: BW, (rheum)
9. DX: Foraminal Stenosis (severe on lower left side but not related to feet) (Spinal Neuro)
10. UNREPORTED SIGNS AND SXS: Muscle spasms in lower legs, ankles, feet, arched, etc. full body jerks, uncontrollable. Strange, “popcorn” sensations throughout the body.
11. DX: CRPS Type 1 (mild? case?) ruled out Fibromyalgia PROC: Back ink (unknown type) offered relief to back Pain TX: Neurontin— responded with decrease in muscle spasms and popcorn sensations, referral to Mayo (PT - suggestion of CRPS and Pain Specialist)
12. Mayo: DX: Small and Large Peripheral Neuropathy (predominately on left side), A1C normal.
13. DX: not normal tarsal tunnel PROC: Vascular Ultrasound - nl (ankle and foot surgeon
14. Most recent: developed Pain in neck and hands: possible pinched nerve in neck? Growing progressively worse
Please read through this and let me know if this looks correct?
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@jeanniem Concerning your history, I see a lot of different theories being pursed, but according to your signs and symptoms, only one or two trends in your history, peripheral nerve symptoms with subsequent central involvement.
What do I mean? Signs and symptoms after your initial 6 month illness:
Peripheral: left foot pain, left foot edema and atrophy, left ankle instability, popcorn sensations in left foot and ankle, developing into hands
Central and autonomic: muscle spasms - in feet, ankles, and lower legs, full body myoclonic jerks, including neck tension, popcorn sensations predominately left side
Additional diagnoses: Foraminal Stenosis at L5-L1, diabetes but controlled.
Now I’m going to give you diagnostic guidelines for CRPS (type one or two) that any provider (specialist or not) may use to DIAGNOSE CRPS at which time they can refer the patient to a neurologist, pain specialist, and/or BOTH for management and care.
It’s called the Budapest Criteria:
It requires NO MEDICAL TESTS.
Symptoms
A patient must have at least ONE SYMPTOM IN THREE OF THE FOLLOWING CATEGORIES:
1. SENSORY: hyper anesthesia (an abnormal increase in sensitivity) and/or allodynia (pain caused by usually non-painful stimuli);
2. VASOMOTOR: skin color changes or temperature and/or skin color changes between limbs;
3. Sudomotor/edema (swelling) and/or sweating changes and/or sweating differences between the limbs;
4. Motor/tropic: decreased range of motion and/or motor dysfunction (weakness, tremor, muscular spasm (dystonia)) and/or trophic changes (changes to the hair and/or nails and/or skin on the limb).
Signs
At the time of clinical examination, at lease one sign must be present in two or more of the following categories:
1. Sensory: hyperalgesia (to pinprick) and/or allodynia (to light touch) and/or deep somatic (physical) pressure and/or joint movement;
2. Vasomotor: temperature differences between the limbs and/or skin color changes between the limbs;
3. Sudomotor/edema: edema and/or sweating changes and/or sweating differences between the limbs;
4. Motor/tropic: decreased range of motion and/or motor dysfunction (i.e. weakness, tremor or muscle spasm) and/or tropic changes (hair and/or nail and/or skin changes).
These guidelines for diagnosing CRPS (a disease that currently has no medical tests for it, regardless of what any pain specialist, insurance company, or neurologist says in the States) were adopted by the IASP or International Association for the Study of Pain at the Conference in 2004, superseding guidelines which had been in places for the previous decade. Since their conference took place in Budapest, they were named the Budapest Criteria.
IASP - iasp-pain.org
http://Www.blb chronic pain.co.uk
http://Www.Rsds.org