NeuroTalk Support Groups - Saw the neurologists

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Saw the neurologists (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/15208-neurologists.html)

Oh sorry, yes I meant the Queen herself - or any of the upper royals - but i did forget that "mum" had passed.

Maybe one of the young prince's??:D

Quote:

Originally Posted by frogga (Post 78505)

Hey Mike

Thanks for your thoughts! it's great getting other people's opinions. I have suggested ketamine comas and every doctor is skeptical about them - apart from my pain dr who put me on ketamine in the first place, but, who doesn't believe it's worth going in to a ketamine coma (I mean with the WONDERFUL british health system it was a fight to get them to pay for the prescribing of ketamine, for my referral to a "specialist - HA HA HA" in Bath and all of that - the fights to get ANY funding was impossible and finally achieved by constant persistent yelling down a phone.

I also suggested a drug pump and the drs were even anti that.... in the UK the treatment for RSD is really dreadful - you are seriosuly left to rot. Until recently I saw my "specialist" yearly..... !!! which considering the rate my condition can change is not good... so... I now have appointments every.... 4 months! I know. Also, I can't contact her about any changes in the RSD because she says it's my GP's responsibility (who then phones her for advice to be told - well, just deal with it). We have almost none of this "prescribe over the phone", "ring him up" etc.. we have firmly scheduled appointments which occur every couple of months with no flexibility. We rarely get the secondary treatment -eg physio/ OT etc without a fight, or when you do get the physio it is only for 6 weeks as they won't organise physio for chronic conditions that don't improve. For an example. At one point I was very ill from the RSD and my consultant needed to admit me to hospital, but there were no beds available. It took him 10 days to find me a bed so I could be admitted (he wanted me on the rheumatology ward because of access to treatment and nurses who KNEW what RSD was). This is just an example of how badly RSD is treated.. or, looking at physio. The normal physio department can only offer me 6 sessions, but, they can't actually do any of the physio because they are not set up for neurological disabilities. HOWEVER, the neurological physios won't treat me because my disease is apparently not neurological enough. So have ended up with both of them refusing to treat me as I was "too hard". They threw me onto home physio but of course, home physio's can't do treatment either - because it's neurological and I don't have a standing frame (which no one will give me because I'm not neurological enough but am too neurological for an orthopaedic one, which was taken off me because my disease got too neurological and I wasn't safe to stand with it).

I'm impressed if you understood that.

I have been researching the journal articles on dystonia and have contacted a couple of the key names in dystonia treatment with DBS - emailing them to ask what their opinions would be. Haven't heard back yet though. I am also getting a second opinion (my neuro would do the surgery but I'm getting a second opion from the other neurosurgeon).

There won't be a trial with the DBS - however, I will be awake for the lead placement and the voltage testing.. so if it hurts too much I guess they'd just remove it. I guess my biggest fear is that the RSD will move into my brain and cause encephalitis. Also, as the batteries have to be replaced 6 monthly I think I would end up with some RSD issues from it.

I don't know. There are times I get so frustrated with this disease - I just get frustrated that I try so hard and yet I still get nowhere, in treatment or in any other way. It's just frustrating, all I want is to be normal, to be able to move around and be pain free, to be able to go to uni, get a first and then do my Phd.

Intrude any time - but I hope this email shows how useless the NHS is and how retarded many of them are....

Thanks again for your thoughts - any thoughts on how to murder all the NHS fund managers??? and UK drs??

Love

the amazing bouncing frog queen xxxxxxx

Hi there,
An interesting prospect the DBS?? Here in Oz we are using Botox for dystonia but DBS has certainly never been suggested for my legs.
As far as the probe in the brain, I can't imagine that would hurt at all as the brain actually has no pain receptors! Sounds unlikely I know but that is how we can have our brains cut, sizzled and fried while we are awake.
Heaps of luck with whatever your decision is but I would be sure to insist on Antibiotic coverage before, during and after!
:hug: Tayla

Quote:

Originally Posted by tayla4me (Post 78596)

Good point!

Dear Frogga,

I had dystonia really bad a couple years ago. I seriously thought at times I could be coming down with Parkinson's.

You know I have a infection in my eye right now, but seriously I think it's coming from my brain.

Do you have any skin ulcers? I have a couple on my right RSD limb. Refer to this article on autospy.

http://www.rsds.org/4/stories/ben_lynch_speech.html

From what I know about ulcers they are treated with antibiotics.

This is part 1 of 2

Did you feel worse on the antibiotics? I do the side effects are very rough. Some days I can't take the antibiotics I am supposed to. I am just learning about the Jarisch-Herxheimer reaction. I plan on reading several articles on it.

This RSD nightmare started 5 years ago from a fall. My first SX was alot of inflammation. Now are nerves in our body are supposed to be protected like a electrical cord. I ask myself why are mine so sick? Could some bacteria cause co-infections and I am not leaving anything viral out as well.

Section 1: Immune-Mediated Disease
43. Pathophysiology and Clinical Features of Multiple Sclerosis
44. Immunotherapy of Multiple Sclerosis
45. Multiple Sclerosis: Management of Disease Complications
46. Optic Neuritis
47. Transverse Myelitis
48. Acute Disseminated Encephalomyelitis
Section 2: Infectious Diseases
49. Approach to the Patient with Central Nervous System Infection
50. Bacterial Meningitis
51. Brain and Spinal Abscess
52. Tuberculosis
53. Leprosy
54. Brucellosis
55. Legionellosis
56. Tetanus
Spirochetal Infections
57. Neurosyphilis
58. Lyme Disease
59. Leptospirosis
Fungal and Parasitic Infections
60. Fungal Infections
61. Cysticercosis
62. Trichinosis
63. Toxoplamosis
Viral Infections
64. Viral Meningitis and Encephalitis
65. Herpes Simplex Encephalitis
66. Varicella-Zoster Virus Infection
67. Cytomegalovirus Infection
68. Epstein-Barr Virus Infection
69. Poliomyelitis
70. Measles and Subacute Sclerosing Panencephalitis
71. Progressive Multifocal Leukoencephalopathy
72. Rabies
73. Lymphocytic Choriomeningitis
74. Rubella
75. HIV Infection and Diseases of the Brain
76. HIV Infection and Diseases of the Spinal Cord, Nerve Roots, Peripheral Nerves, and Muscles
77. HTLV-1 Infection
Other Infections and Mimickers
78. Chronic and Recurrent Noninfectious Meningitis
79. Prion Diseases
80. Rickettsial Infections of the Nervous System
81. Mycoplasma Infections

http://www.axon.es/Axon/LibroFicha.a...qb&Libro=52723

Part 2 of 3 I am sorry cannot you use my right limb very much.

Hi Frogga,

I'm so *so* sorry to hear you're having such a bad time, poor you :hug:

Knowing you can't really do much at present, I spent a little time looking up DBS specifically in connection with CRPS/RSD and came up with zilch.....I'm a good finder, but maybe there is something out there; or maybe you'll be an RSD first. Scary thought.

I see exactly where you're coming from, all things being equal, DBS sounds like the answer (a good start anyway) in the same way that it often is for people with Parkinson's or severe dyskinesia.

The infection and meningitis issues you can get statistics on, I'm sure, and that might help you to decide whether to risk it.

But the fact that surgery is a known "RSD spread causer" - but no one knows why - that's the big sticking point.

I have no idea whether the brain can be drenched with industrial strength Vitamin C (a la Dr. Andrew McBride's research on colles fracture at Bristol Royal Infirmary) or Vitamin E (can't remember where cited, but well-documented)....rather imagine maybe not.....

Anyway, I'll keep searching, I really just wanted to let you know you're in my thoughts, big virtual hugs, brave girl, hope you feel better very soon,
all the best
:hug:

Hi Frogga,

Pathology with something bacteria or viral is very, very difficult for them to pin point. Their are some that are a piece a cake for the Docs. In my case I think something is chronic which will be a rough fight, but I am ready.

I have had alot of things ruled out. But for one thing like the Elisa for Lyme is NOT accurate. The blood work needs to rushed as well for the labs, relating to something else bacteria or viral.

Here is a link relating lyme to RSD.

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

http://www.pubmedcentral.nih.gov/art...i?artid=501517

Here is another relating cell changes.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_DocSum

I have my heart, brain, etc... involved. I hope you get well real soon. Hugs, Roz

I also believe their are a few different roots to RSD. This being one.

heya - thanks for your responses!!! It's really useful getting other people's views on this.

Firstly, Jo - now... if I could get Prince William on the case!!! (he is SO cute... definetly my favourite out of the two!)..

Tayla/ Mike.. my concerns about the DBS with the RSD is the healing - as RSD causes swelling/ skin problems etc I was worrying about the risk of swelling of the brain after having the op done. I was also worrying about the chances of the incision healing due to my RSD - I have ulcers and sores from the RSD and small cuts take months to heal - I have a small graze on my knuckle which has been there for months and is still barely healed just because the blood supply to my skin from the RSD is so bad. I just don't want an open skull wound!!! Friends of mine who have had SCS's implanted have had unhealed surgery site for years afterwards etc. Also, as I have pretty severe RSD the chance of me getting infections is a lot higher than the general population. If it was just the dystonia I was having then the operation would be pretty much a no brainer.. (LOL). stupid RSD!

Dear Roz - thanks for the sites! I have looked through them briefly but haven't been up to a long proper reading thing though. I do agree that there are many routes to RSD and I also believe that this is what leads to the differences between severity, different treatment options needed and possible length of time of symptoms. I hope that one day the drs will understand enough to be able to seperate the types and then be able to treat them! that would be so awesome!. Many of the drs I have been under thought that I had MS because of my symptoms - apart from the colour changes etc.. but my MRI's are almost clear (there are some changes but whether that's RSD or whatever... the dr's just gave up - they haven't got the funding to do proper tests.. The current neurologist I am under told me I had a choice. Either spend a couple of years trying to decide what is "properly" wrong with me - through tests (2 year waits for many of them!) or to try and get the symptoms under control and then see. I chose the symptom treatment option because I was at a point where I couldn't handle my life with the level of symptoms I was experiencing. I do agree that there is more than RSD going on and that RSD is probaly linked to another condition that hasn't been recognised yet... I really hope your blood tests show up if there is anything else going on with you and the RSD. I also get lots of inflammation. I was on antibiotics for my ulcers but we have since started treating them topically with hydrogen peroxide and iodine because I cannot tolerate high levels of antibiotics without feeling pretty dreadful - but I suppose most people are like that. I don't think with me it can be lyme disease - as I have not spent time in that part of the US - I have spent alot of time in LA but otherwise have been in the UK/ Berne/ Lyon/ Geneva... I guess the inflammation risk is a reason that the op scares me so - I do NOT Want my brain becoming inflamed, especially as even tiny "surgeries" can put me in agony for weeks - my last EMG was 8 months ago and I lost most of the remaining use of my arms straight afterwards - all I remember is sitting in the office in hysterics, passing out and then coming round and being unable to use them, and all that from a needle! (sorry, have just realised how much of this email is just rambles!).

Artist - wow, a brain smeared in vitamin E cream - that could be really cool! it would moisturise my brain!. If I get it done I think I will insist on blocks or ketamine administered throughout the surgery if possible as I feel it's the only way I'll tolerate it and hopefully not flare afterwards. My biggest fear with this is that if I have it done then I will lose the quality of life it has taken me so long to get.

Thanks so much everyone - I know I'm going on about it - but it's just you are the only group of "RSDers" who can relate to me about the fears with the RSD - and most of you are far better researchers than I will ever be!!!! Thanks for letting me moan and thanks for all your help!!

Love and Hugs

The dead frog xxxxxxxxxxxxxxxxxxxx

Frogga--You are the BRAVEST and most AWESOME person!!! Whatever you decide, it will be the best choice for you. You have a LOT of people* on your side, Frogga, and they will ALWAYS be at your side, no matter what your decision is!!

With the UTMOST Respect for you, Frogga,
Brokenwings

*Anyone have connections with Frogga's favourite Prince?? We gotta get a BIG smile :D on Frogga's Face!!! (EXCELLENT taste in men, Frogga!!;) )
And,You just ROCK!!!!:D :D :hug:

Hey BW - :Good-Post:

She's right, Frogga, we luv ya!

all the best :hug: