Author Topic: Please advise  (Read 192 times)

JoannaP79

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Please advise
« on: October 13, 2017, 12:24:38 AM »

After years of saying I think i have sjogrens and ' oh no you haven't', guess what, I do have it. Pursued a private lip biopsy as results on bloods always clear.
My problem is that I live in the UK and I don't know what options i have for treatment. My problem is a severe neuropathy, nld small fibre neuropathy, POTS, syncooe, certain I'm having cns symptoms and my swallowing is severely impaired.
With this in mind, any suggestion of mouth lubricants by my useless rheumatologist just won't cut it.
Can anyone in the UK with severe neuro symptoms please advise as to what options may be available?
I appreciate the options are limited but I wish to fight tooth and nail for the beat treatment.
Thanks all

Joe S.

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Re: Please advise
« Reply #1 on: October 13, 2017, 07:37:44 AM »
Welcome to the forum. I am in the USA. Some of us have posted what we are taking in our signature. I have trouble with most drugs so I take supplements. I hope you find some relief. Some of us will accept private messages (PM's) so you may make friends with some of those folks in the UK.
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SjoDry

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Re: Please advise
« Reply #2 on: October 13, 2017, 07:57:17 AM »
UNITED KINGDOM
British Sjögren’s Syndrome Association (BSSA)
PO Box 15040
Birmingham B31 9DP
Phone: +44 (0) 121 478 0222
Website: www.bssa.uk.net
Sjodry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Scottietottie

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Re: Please advise
« Reply #3 on: October 13, 2017, 11:32:19 AM »
Hi  :)

Ask your GP to refer you to a neurologist. As far as rheumatologist goes - you are entitled to a second opinion. The PALS service can be helpful in these cases. I would also ask for a referral to an opthamologist.

(I'm in the UK)

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irish

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Re: Please advise
« Reply #4 on: October 13, 2017, 01:46:45 PM »
Suggestions to help with swallowing.......drink with a straw.......eat thicker foods, puddings, mashed potatoes with gravy, etc.........run meat through food grinder, blender,etc and put broth or gravy over it......food processor cooked vegies and put over thinner mashed potatoes, etc........make smoothies of potatoes, vegies and meat......do anything that you can think of in any order.

Swallowing usually works better if one looks to the right or left when swallowing. This seems to open up the throat so that there is more room for food. Hope these ideas help. I got them from swallowing therapy. Irish

JoannaP79

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Re: Please advise
« Reply #5 on: October 15, 2017, 05:02:34 AM »
Thank you all for your replies! I have to be honest I feel like I need significant immune suppression. I believe I am having central nervous system issues / brain issues. I am losing feeling and strength in my face, my lungs feel full of something and burn horrendously. I have had extreme confusion and been absolutely out of it with extreme head pressure and pressure in my head like no other. I have felt like I'm on drugs and also having severe autonomic problems.
I am desperate. Please if anyone with severe neurological issues has had any relief with immune suppression please tell me what you had. I'm reading every single medical article I can find. Being sero negative I believe I will be denied rituximab. Has anyone tried something else like biologics enbrel or cellcept or Imuran? I've now joined the British sjogrens association so many thanks for the link!

MAT51

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Re: Please advise
« Reply #6 on: October 15, 2017, 11:35:01 AM »
Hi there. I think I replied to you on the BSSA members forum earlier. I don't use that forum much at all because there are no e-alerts and the login is such an effort! but I went there to post a question, read your post, and felt I had to reply as someone in a very similar situation myself.

Sadly the Sjögren's doctor I saw (same woman as you saw I think) only confirmed what I already knew - that Rituximab and newer drugs will only be made available to us in U.K. as part of the trickle down/ seepage effect after seropositive sufferers have been shown to improve on it first. This is same for RA but of course much more is known about seronegative RA and the seepage effect is much more established - so that those with seronegative RA can and do benefit from Biologics.

My appointment with Dr P was only last Monday so I'm still reeling about all this. I see my neurologist next month about worsening neuropathy but not expecting to get anywhere. If my CNS becomes involved then things might change for me but meanwhile I'm stuck with turning increasingly numb and losing my balance, unable to stand for more than 30 seconds without awful pain and the stinking  fatigue. Ugh - just have to hope the RA comes back. Meanwhile Azathioprine and Methotrexate did both help the neuro symptoms, as did Prednisolone, but unfortunately my body rejected them both rather strongly and max dose of Mycophenolate appears not to be doing much although my doctors all say that this is because irreversible damage has already occurred - this is loss of sensation and what I believe is PoTS.

Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!