Two weeks ago I started itching on the back of my right upper forearm (6 inches long) except there was not a rash or discoloration. , then about a week ago I noticed the small pea sized lumps under the skin that are itchy and painful to touch, you can't see them only feel them. Now 4 days ago it has started a 2 inch long spot in my left upper arm on the backside. I was at my Neuro's office yesterday and asked her to feel of it ,to see if she felt the same thing i did, she did so i called my Rheumy and am being sent to a Dermatologist.
My dad his brother and their cousin all have Sarcoidosis.
Right now my diagnosis are Undifferentiated connective tissue disease, Inflammatory arthritis, Raynauds, a little fibromyalgia and a little lupus, hypoglycemia, mitral valve prolapse and loose valves. Nerve pain in knees, fingers and toes and a new diagnosis of Chronic Paroxymal Hemicrania and Trigeminal Cephalgia.
Waiting on new autoimmune bloodwork My Rheumy runs every year, so far only thing that has shown was one lupus blood test but disappeared the following year and sed rate stays around 35.
I am so very sorry that this group has gone unattended for so long. I sincerely hope your docs straightened your questions out and I'm curious to hear what the cause was. The lumps could have been lymph nodes but I've never heard of them itching before (not that it means it doesn't happen). Your other DX though... some of them sound very much like sarc. Others I've never heard of. I'd love an update if you have one.
My Rheumatologist just told my husband and I a couple of months ago that she thinks I have sarcoidosis like my dad, along with lupus, inflammatory arthritis, fibromyalgia. I am fixing to go to a neuromuscular specialist July 2nd. The neurolgist gave up trying to figure out what I have and this stuff gets worse every year or season.
Have they done any biopsies to verify the sarc? It can cause joint inflammation also. Beyond that, neuro sarc isn't anything to ignore. I hate that your doctor isn't more concerned about it. Can you seek a second opinion?
freaked out last night, walked down my hallway sat down, the phone rang, went to get up and couldn't stand up, my legs felt like rubber, tried to push up on bed and walked like someone with cerebal palsy. This morning its really mild, my lower half keeps feeling like its swaying. Called my Rheumy and she said to go to my neuro, but he is booked so going to my primary care doc at 11:30 this morning.
No test have been done to confirm sarc, they said they can't biopsy lymph glands in neck or underarms, said they have to wait to see if groin lymphs swell up.
I've heard of facial palsy in sarc patients and it's possible that it translates to full body as well. I can't imagine how scary that was and I'm so sorry you're dealing with this. I doubt a primary will be able to do anything for you but perhaps they can immediately get you into a different neuro. I'm appalled that they won't see you same day for something like partial paralysis! I don't care if it did mostly go away. Please seek a second opinion with a different neurologist.
Finally went and seen my neuro all he did was runa B-12 and sed rate which had already been done it was normal as I am on monthly b-12 injections and I had no inflammation at the time. He said (I don't know what it is, wait til you go see the neuromuscular specialist. maybe they can figure it out.I went to my neuro, I am going to a neuromuscular specialist July 2nd, I have been dealing with all of my symptoms for 3 years now.
I just found out that my first cousin has the same identical symptoms I do, she has given up because her doctors can't figure it out.
Muscle spasms in arms, legs and body
swollen lymph glands in neck and under arms
mouth and nose ulcers-before i was put on methyl/pred
swelling in legs and hands
sensitivity to sun
loss of hair
unexplained fever 100 degrees
Pleurisy-before being put on Methyl/pred
Nerve pain in knees and feet
I had severe low B-12 and low Vitamin D
Costochondritis of chest and ribs
sweeling in knees
severe ringing in ears
numbness on lower legs that comes and goes
lost word recall
droopy left eye at times
joint pain in elbows,knees, ankles, hips, shoulders and fingers
perment double vision in both sides of peripheral vision
Double Vion intermittent
lumps under skin on upper arm under the skin that can only be felt
Spasms in toes where on lifts up and turns and crosses the other toe, very painful
Things i have been diagnosed with so far:
Hypothyroid after total thyroidectomy and thyroid cancer
ocular migraines without headache
Livedo ReticularisPossible sarcoidosis
Aortic regurgitation-mild to moderate along with two other very mild leaky valves
Fibrocystic disease-had that since 1978
Mitral valve prolapse
They have tried methotrexate, Plaquenil, Lyrica, Immuran and had a reaction to all of them.
I am currently on methyl/pred-4mg
Vitamin D-2000 IU
B-12 injections monthly
Phenegran as needed
Tags: leg weakness, tremor, Arthritis, Fibromyalgia, ms, Multiple Sclerosis, lupus, Myasthenia Gravis.
Have you been checked for gluten ataxia?
It would mean being 100% gluten free for 1-2 months to see if symptoms clear. It is different than celiac disease because no blood test, nor an endoscopy can diagnose. Just a completely gluten free diet.
I have celiac and have read on the gluten free/celiac forums people who were cleared of all symptoms, many similar to yours, by going gluten free.
I am sorry if this is repeat info. I have never ever posted on boards like this before but something about your post made me need to.
I hope you're doing better!
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