Can All This Be Due To Autonomic Dysfunction?

[louloutinks]

Hi all

Sorry if this is a long post!

Back in March I went to A and E as I had pain, painful pins and needles in my arm and I couldn't even pick up a spoon. The London physio done some tests and I was sent to a specialist who said it was thoracic outlet syndrome, but wanted to do MRI to check as my veins were sinking in when I raised my arm. Today, I went to see the specialist (not the same guy though) to discuss results. He said that the result was normal and there was nothing wrong. Which I argued as I have had numbness in my hand for over 5 months now, along with the most horrendous arm and neck pains, headaches from ****, vertigo and hearing problems and arm weakness. He said that if after another 6 months my hand gets weak then to come back. They even said I had a diminished pulse in that arm and I get different BP's in each arm. I asked if the numbness could cause any long term damage and he said no. But he said I should have more physio locally. I asked him if TOS always shows on MRI and he said yes (even though I have spoke to others online who have tos and they said it doesn't always show on MRI)

I also see a London rheumy yesterday and he said that he is not ruling out TOS despite nothing showing on the MRI.

He also is sending me to a neuro hosp in London for TTT as he said they can deal with ALL my problems there. But the thing is that I do not get is the rheumy said all my other symptoms are due to autonomic issues. I find that hard to believe but if I list them, I wondered if you nice people on here would agree with him or disagree Here goes.....

Burning painful patches of skin that are painful to touch that even clothes or bed sheets can hurt. Have had this on back of legs, stomach/ribs (lasted a week), left hip, right butt cheek.

Pins and needles in arms and legs that wake me up at night

Fatigue aqnd exhaustion but find it hard to sleep

Tremors in my left bicep/tricep that wake me up at night and my arm aches in the morning

Whole body aches - feels like flu but no temp. Wake up daily with sore throat

Hot, cold, hot, cold, never seem to sweat apart from my neck. Get patches of goose pimples for no reason.

Bright colourful flashes in vision (like windows media player alchemy!). Grey spots in vision

Feel twitchy and trembly. Hamstrings, biceps seem to move by themselves. When I stand, my legs shake really bad but its more of a muscular shake (if you know what I mean) as they do not feel weak. I get the usual pots dizzy and tachy and BP stuff on standing.

Crawling restless legs at night made worse if I need to pee.

Peeing loads during night. Bowels changes volume/constipation/IBS

Breathless and tachy when walking up stairs

Chest pains (m shaped p waves and concave upwards st elevations on ecg but no heart attack

Brain fog, can't find words, concentrate or follow conversations at times. Very forgetful

Hearing problems, get pain with certain pitches and sounds

Have a numb ball of left foot that I can stick a needle into without feeling it and I get pulsing buzzing feeling on front part of my foot/ankle. Electric sharp shocks in my shoulders and neck if I turn head

Packed on loads of weight (2 & half stone) for no reason now losing weight for no reason

Livedo reticularis. Lilac knees and shins. Dark red rings. Hives. Blotchy circular/oval rashes. Petechia all over legs and inside mouth.

So....are all the above really controlled or caused by the autonomic system??

Sorry for such a long post but just need to know.

Thanks in advance for any help/answers

[starby]

Sounds very familiar to me. I have ME/CFS which is still largely misunderstood, but there's often overlap between this and pots. Are you in UK or US? Has it been suggested that you may have pots or even MS/CFS? You may know it as CFIDS? All your symptoms can be attrubted to malfunction of the autonomic nervous system.

[arizona girl]

Tinks, your symptoms sound like they could be caused by a couple of different things. Have they done a skin biopsy for small fiber neuropathy yet? Then numbness, burning, can't touch the skin, electric shock, not sweating are just some of the symptoms of it. I'm guessing they already checked your large fiber nerves with emg and they are normal. That is classic SFN. The small fiber damage can be caused by several autoimmune diseases. Lupus presents with the kind of skin and mouth lesions you describe. It also can cause sfn. Also if you feel sick like your catching something and don't run a fever, that could be the sign of an immune deficiency. Have you had your wbc checked when you feel that way? Quantitative immunoglobulins, rheumatic panel, comprehensive cbc, metabolic panel and screening for other autoimmune diseases are some of the tests you should ask for.

The shaking on standing sounds like the symptom erika in orlando had, and that is caused by stiff persons syndrome. I don't know what TOS is so can't help you there. Dark red rings where? You can google the things I've mentioned above and see if you fit any of them.

[Katybug]

Hi Tinks. Sorry to hear you're going through this but it is unfortunately familiar. I am not sure how prevelant Lyme Disease is in the UK but your rashes ring a bell with me in particular. I have had quite a few of your symptoms and some of your rashes are consistent with Lyme Disease which is what we believe kicked off my POTS 4 years ago. Maybe they should add Lyme testing to your diagnostics if that is a concern in the UK. Hope you find some answers soon.

[potsgirl]

I agree with Arizona Girl and starby. You may have several things going on...yes, they can all be caused by dysfunction of your autonomic nervous system, but some of your symptoms sound like they could be something else, too. I have small fiber neuropathy, and get a lot of pain in my feet/ankles/knees and my hands/wrists/elbows. They call it the "stocking effect." They can hurt so badly that even a sheet can cause you agony. I'm finally on some pain medication that helps the pain be tolerable. It's called Neurontin (Gabapentin is the generic in the US), and after trying Lyric and Oxycontin, it's worked the best for me.

Also, the pain in the other parts of your body may indicate large fiber neuropathy. Have you been tested for that? If you can go to an autonomic specialist, that could help you pin down which tests you need, and get you on an individualized treatment plan.

Good luck to you ~ Cheers,

Jana

[louloutinks]

Hi all and thanks for all your great replies.

I do have EDS and was told that I have POTS (poor mans tilt) by Prof in EDS and he said I have autonomic dysfunction. The rheumy I saw the other day told me that all my sx's were to do with the ANS.

Bit worried as my left arm felt odd to touch with not much sensation, so I squeezed the skin with no feeling so I dug a pin in my wrist and felt nothing until it got half way up my arm then I jumped. This is not right and I am feeling real worried.

I really do not know what to do but have been fobbed off today by the orthopaedics. Should I go back to my GP and tell him I am not happy or should I email the original specialist that deals with TOS or wait for Neuro Hospital but it could be up to 8 months wait to see them,

I will have a google of all the suggestions from you all. Thank you so much again for your help I'll get back after a google

[arizona girl]

You keep using TOS, don't know what that is. If it is not common to this forum, spell it out, because most of us may not know what it means. EDS itself can cause the pots symptoms/autonomic dysfunction and cause impingements, maybe causing neuropathy. Can one of our EDS's answer that for tinks. sx's?

If you are in usa, maybe someone can suggest a hospital or doctor in your area. What autoimmune disease did your rheumy rule out? Some of your symptoms sound like a lyme or autoimmune and some sound like neuropathy. There are neurologists that specialize in autoimmune neuropathies and could also address neuro problems caused by EDS. If you can find a neuro that specializes in autoimmune neuropathy, they should be able to look to the whole picture. With EDS don't you have a specialist on board for that issue, they should be able to direct you to the right neuro's for neuropathy associated with EDS. A neuro that does skin biopsy for nerve damage also will be a good neurologist.

If your out of the usa, there are also members on the forum from many countries that might suggest who to see.

If you do a post about EDS and your symptoms you might get those members to help you more specifically.

Your asking some questions that are hard to answer, because you haven't provided enough info about the specialist/GP and what they have already told you.

[louloutinks]

sorry arizona girl it is thoracic outlet syndrome. Thought it would have been known on here. I have had test for lupus and the ANA was negative. The rheumy said the rashes are due to ANS which baffled me a bit to be honest as he said they will deal with that at NHNN in London. I am in UK. I have had no real answers from my local GPs as they know NOTHING about dysautonomia. I got a sweeping explanation from London doc too and then a referral on.

I have eds, pots and thoracic outlet was being looked into but MRI came back negative. My kidney function egfr was 49 now is 86 nd they said it could be caused by dehydration. I have had ANA test, ESR and FBC which were done a few months back - all ok. My local docs are not that good as my last lovely one left just before my dx of pots and eds. I was seen in London by a certain Professor who EDSers may know of and then I saw a new rheumy this week who is now referring me on for TTT as salt and water are not helping my tachy or BP. Thing is, when I saw the 1st rheumy, I didn't realise that they deal with skin issues too.

I have had dark red rings on my left hand and arm( that takes a day or so to fade. I get the oval/ circular shape rash on my arms only - they faded but left a feint mark and then come back in the same place and this seems to be if I wash in really cold water. I had red spots (petechiae) all over my legs, inside my lips and on my gums that last for about 5 days but I now only get a few rather than being smothered. The rest I hope is understandable as in my first post. Edit to add the hives. They just come up for no reason at times - other times if I sit in the sun for a short while and I get tachy and headaches with that too. A few years back I was told it was a sun allergy.

That is all I have been told by my docs/gps and to be honest I feel they have not given any explanation.

[louloutinks]

Hi Jana, I have looked up SFN and some things ring true like the bed sheets being uncomfortable on my skin etc. Not sure if I have read it right but it seems to be a constant thing where as mine comes and goes and maybe lasts a week. I can relate to it saying it affects the upper layers of skin as when I dig the needle in my arm I can only feel pain when it gets quite deep but am aware of something deeper inside when I poke my wrist. The ball of my foot is worse but not sure if because it is a harder type skin. Have also looked up Lyme - they seem to be a ring with a circle in the middle however mine were very dark red but just single rings. I do not think lyme is prevalent in uk.

They were going to do an EMG but decided to do the mri but now that has come back normal they have discharged me but I am really unhappy with the decision. Unfortunately in the uk we cannot demand what tests we want. Just have to go along with the GP's decisions.

[yogini]

maybe the other way around...if you have somethign autoimmue going on, it could cause your autonomic system to go haywire...