Mystery autoimmune illness but which one??
Posted , 13 users are following.
Hey all,
I know no one is a doctor but I'm just looking to see if anyone has symptoms such as mine or if they can relate. I'd really like any direction that points to a diagnosis and/or possible relief that I can ask my doctor. I'll try to keep it summarized with my symptoms first then what tests I've had done (spoiler: 98% normal).
Symptoms started 1-2 years ago with waking up in the mornings with very sore joints: ankles, arms, etc.. I would try to exercise (regular cardio) but the next morning I felt as if I could barely get out of bed, my body ached so bad. Thighs started aching randomly a few months after and then I noticed the heaviness in my legs getting out of a friends pool. Very insidious.
Since then, body gets so fatigued I feel as if I'm carrying twice my body weight. It is extremely exhausting to walk around a department store or even shower. Also, my brain is not necessarily always tired, just more so my body. Since then, my left leg has become very heavy and it has caused me to walk off balance. Walking on it for long periods of time is very exhausting and my foot starts hurting. It also feels as if the arch of my shoe is oddly pressing into my foot. My face, fingers, thighs, calves, and feet will twitch (not all at once). I drop things and my arms ache so badly a lot of times it wakes me from sleep or I am unable to sleep. And I experience numbness in right side of face, forearms, and shins.
I also now have slasthma and Ménière's disease.
1 like, 59 replies
mandy77480 Hayhue
Posted
Hi
I have suffered with various symptoms and had so many tests
over two years. Seen two Neuro consultants,two movement consultants
Had a nerve conduction test done by a technician and was called
back to have it done again by the Neurophysiolgy consultant.
Within a hour he had diagnosed me with....
Severe small fibre sensory polyneuropathy diffuse and Autonomic
Neuropathy. This made sense of all I'm suffering with and
he said it was both Neurological and Autoimmune condition
Hope this helps
Hayhue mandy77480
Posted
Thank you. The 2nd neuro I saw diagnosed me with small fiber neuropathy based on my nerve study however they didn't do a muscle biopsy which I've read is essential in that diagnosis. My feet and hands also don't burn like they say they should. That's why I sought a 3rd opinion. I've also thought of autonomic neuropathy.
What are your symptoms if you don't mind me asking?
cynthia_65456 Hayhue
Posted
Just wondering. ..do you get any skin rash's with your symptoms? ?
Hayhue cynthia_65456
Posted
Not really. I have noticed since this all started that I'll get little itchy ones here and there but nothing major.
mandy77480 Hayhue
Posted
Heavy tight limbs,can't walk in a normal way or normal speed
Stabbing,shooting,burning,sensations in limbs.involuntary jerks/twitches.
Can't hold anything in hands i.e. telephone for more than 10 mins I
I have to keep changing hand.will lose balance and always
stumble to the right.loss of grip so drop things, itchy skin,can't regulate
temperature,heart beat races at times,digestive problems,bowel
and bladder problems,gasp for breath and don't sleep well at all.
Feel constantly drained everything is a bigger effort
I have to eat every three hours or I have the symptoms of a Hypo but
I'm not a diabetic.All the last bit is down to the Autonomic system
nerve damage, the rest by the peripheral system nerve damage.
margaret22116 mandy77480
Posted
mandy77480 margaret22116
Posted
The consultant did say it was Autoimmune and Neurological.
I'm hoping now they will test to find out which Autoimmune and
treat to slow progression of nerve damaged.Then look into all
the different Autonomic damage and treat accordingly.
margaret22116 mandy77480
Posted
mandy77480 margaret22116
Posted
I've just been passed from pillar to post since it all started in May
2014.
All thought Atipcal Parkinsonism this hasn't been ruled out.
I also have Colonic Inertia,rectal prolapse, all possibly linked now.
The consultant from Neurophysiolgy who gave me the diagnosis
was brilliant in every way.
I thought I was having another test on another day, so was shocked
when he told me. I'm on first name terms in my hospital PALS
team who has been a tremendous support to get me this far.
It's been a nightmare, but I'm glad I've found this forum because
I know now people are feeling the same as me.
We might look ok on the outside but there's only us that know wha
we are feeling and experiencing inside.
margaret22116 mandy77480
Posted
yes Mandy sometimes people are great...they know you are suffering and maybe not sure what is going on but they understand how bad you feel.
Where in the uk are you?? I always recommend this brilliant doc to people. He diagnosed my problem (I have Behcet's disease with a lot of neuro symptoms which don't show up on MRI or any other scans. Caused by inflammation in the brain stem). He is a great consultant very bright and has a lot of knowledge of auto immune and auto inflammatory disorders. He has a clinic in London (both private and NHS) and he also acts as a visiting consultant to other hospitals. He is a neurologist but with special interest and knowledge of auto immune issues. He would be worth a visit for you. Dr Desmond Kidd at the Royal Free in Hampstead.
mandy77480 margaret22116
Posted
Staffordshire.
duane26425 Hayhue
Posted
I came to this site looking for a place where a friend of mine might find someone with autoimmune symptoms like his. My hope is that they might have found some relief for their problem, and pass that info on to him.
While looking at your post, I noticed that you were experiencing symptoms that I experienced about a year ago, shortly after cataract surgery. Don't know why it triggered it, but the next day I woke up with aching muscles and joints. Felt like I had cut glass in my joints. I went to a rheumotologist. He mentioned that it could be an autoimmune problem, or perhaps rheumotoid arthritis. He put me on 10 mg of prednisone every day for a month. After 2 days on the prednisone, my aches and pains went away. I tried taking 10 mg for two consecutive days and then stop and see how long the relief lasts. I have been doing that for about 4 months with great success. I was told that I will most likely not suffer any serious side effects from this small amount of prednisone.
You might try doing this and see if it works for you. I hope it does.
Regards
Duane
duane26425
Posted
Hayhue duane26425
Posted
Hi Duane,
Thank you for your response. I didn't test positive for RA in blood work but I'm seeing a rheumatologist soon so I'm hoping they'll be able to tell me more. It does almost seem like it happens overnight, doesn't it?
I'll keep you posted. Thanks again!
duane26425 Hayhue
Posted
I didn't test positive either, but he wanted to put me on methotrexate, which can have some bad side effects. The prednisone has worked wonders for me. I hope you find a solution to your problem.
Hayhue duane26425
Posted
Oh really? I do have some prednisone that an ENT gave me for allergies but I never tried it (my sinuses are clear - confirmed by CT & MRIs).
My neuro wouldn't give me any steroids because she didn't want to mask any symptoms that may show up on a test.
So I think I'll wait to see what the rheumatologist says as I wouldn't want to make myself worse or so better that I'm dismissed.
But I'm keeping it in mind if they can't help me so thank you Duane!
margaret22116 Hayhue
Posted