Neurologist appointment 2nd September, but not su... - LUPUS UK


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Neurologist appointment 2nd September, but not sure what I’m meant to be saying. Been far too bogged down with rheumatologists 😐

Lisalou19 profile image

I’ve had mri of brain and spine so MS is ruled out.

But I’m not sure what of these following symptoms are for this department 🤔

Burning sensation in feet (.painful)

Pain in hands (difficulty using pens or utensils)

Head feels like it’s in a bucket (sometimes with distorted hearing and sometimes dizziness)

Pain triggered by cold (water or weather, hands)

Numb sensation only when skin is flaring and taking a shower

Excessive pins and needles when resting (legs & hands) worse when flaring

Tremors in fingers and lower arm

Inability to keeep arms up (Ie to do hair)

Rash on legs triggered by exposure to hot/warm water

Bladder issues (maybe nerves muscle or inflammation triggered)

These are some bits but how do I know what to filter from dermatology , rheumatology ? Or do I say it all and they filter it for me 🤷‍♀️

Feel like I’m really going to walk into a department and look like or sound like an idiot

As always your thoughts and feedback are very much appreciated


75 Replies

I'm waiting on a neuro appointment too. In my case I suspect it is passing the buck. GP says speak to podiatrist. podiatrist and rheumy say neuro. but I think neuro is just going to pass me back to one of the others.

I too am having difficulty telling one pain apart. If I ignore something I worry it might be something I should have mentioned yet they all make me feel an idiot with the things I do mention. catch 22.

hope you get something sorted with your neuro.

Lisalou19 profile image
Lisalou19 in reply to suzannah16

😣 exactly what I don’t want to experience!!!!! I’m currently already in the cross fire between derm and rhuem!!!! Don’t need a 3rd in the mix


Hidden profile image
Hidden in reply to Lisalou19

A god neurologist will do joined up thinking.

Hi Lisalou19,

I have been seeing a Neurologist for nearly 4 years & 8 months. I would say that their prime role is to control your Auto Immune System.

They look to find the correct path of medication to control your illness, and hopefully stop your own immune system from attacking you.

I would express all the symptoms that your illness impacts on both your body and day to day life.

I wish you Good Luck 🍀🤞for your scheduled Neurology visit on 02. 09.19.

Looking forward to hearing the outcome of your visit.

Take Care x


I always thought this was the rheumatologists role.

Sounds like this department has been really helpful for you. Thank you for sharing your experience.

I’m stuck in no mans land at the minute when it comes to treating this illness


Hi Lisalou19,

Yes, my Neurologist has been influencial in my treatment. Although, my disease is very active and the meds have had little impact. However, the medical world is always moving on, and we can live in hope that one day we will be saved from this horrible illness.

Re: Rheumatologists:- they deal mainly with immune-mediated disorders of the musculoskeletal system. How the ilness and medication affects your bones and muscle tissue etc. They all should work in conjunction with your other Consultants to find the best treatment for you, everyone reacts differently.

I hope you find your visit to be successful.

Good Luck Lisa x

KayHimm profile image
KayHimm in reply to hopegalore20

Yes, it is so important for them to work as a team. The specialists in each area know how the disease affects that part of the body and the best way to control symptoms.

At this point, I think, like you, my neurologist is the main one making decisions, though he is good about sending notes to my rheumatologist. As you said, every case is different.

I hope they can find a treatment that works for you. Can I ask what is affected neurologically in you?


hopegalore20 profile image
hopegalore20 in reply to KayHimm

Hello KayHimm, how are you? Do you feel that your own treatment is helping?

Re: Neurological symptoms that I suffer. My legs have a lot of nerve damage, my muscles are very weak, making the bed leaves you exhausted and running with sweat and feeling like you skin in 10000 degrees. Unable to lift certain objects as you cannot grip or take the weight.

Emotionally you feel like your life has been stolen from you. All the plans that you had in place seem out of reach.

Some days you feel "what's the point of this life". Then the next day you are so happy to wake up and face another day.

It also affects your demenia when you see how it impacts on your near and dearest and close family. It does take its toll, but everyone is praying for the day when you "get your life back".

Life is worth fighting for... 😃 👍 So we must battle on and not let this disease win.

Buckley123 profile image
Buckley123 in reply to Lisalou19

And mine my main care is neurologist xx

It’s a Rheumatologist that deals with your immune system not Neurological teams

Roarah profile image
Roarah in reply to Trilliano73

Not true if your autoimmune disease is effecting your nervous system as MS, lupus and APS often do. Many with autoimmune diagnosis see teams of doctors often including urologists, dermatologist, cardiologists and neurologists. My lupus and APS have effected my kidneys, heart and my brain so I see doctors other than my rheumatologist more often than not.

Oh your symptoms are so like mine!!

Not sure if you have been to Neurology before but they will test your reflexes and look at your coordination. They might look at your ability to heel-toe walk, touch your finger to your nose, etc. They’ll also look at sensation and might use a tuning fork to do this to see if you can feel vibration, etc. They also might look at your vision- dilation of pupils and ability to detect colours, etc. I think they will find your list of symptoms very useful :-) My neurologist isn’t great but I think I bombarded her with information on the last visit so she didn’t know what to focus on! So start with your main issues and feel free to ask what they think might be causing them!

Lisalou19 profile image
Lisalou19 in reply to SRiley

Did they suggest what it could be?

Gosh I’ve got such an over load of sensations and pain I can’t keep up with it.

Thank you for relating your symptoms to mine. It really helps clarify that this is real.

I’m still carrying the “mental” label with me through all my appointments. That’s a real hard one for me to let go 😔


SRiley profile image
SRiley in reply to Lisalou19

Oh I know that feeling! But don’t let anyone make you feel that way!

The neurologist said I possibly had myelitis as my reflexes are very odd. But it hasn’t shown up on an MRI (although apparently it doesn’t always show up 🤔). She had also mentioned functional neurological disorder but I know it’s not that and I told her that. The rheumatologist thinks I have had some kind of autoimmune response but he doesn’t know why or what it is. I had a steroid injection last week and it’s helped with the sensation in my legs and that would suggest I’ve had some kind of inflammation? I think!

Good luck with your appointment :-)

Lisalou19 profile image
Lisalou19 in reply to SRiley

Steroids make me feel really good but my bloods are not showing signs of inflammation, which is frustrating.

Although I have just put it to my rheumatologist that maybe my inflammation is in the muscles , would that still show in bloods 🤷‍♀️X

MEGS53 profile image
MEGS53 in reply to Lisalou19

Yes, it would - or should!! - show in your bloods.

KayHimm profile image
KayHimm in reply to Lisalou19

Lisa — The « mental » label needs to head for the trash can immediately. You have had an abnormal neurological exam, autoimmune antibodies consistent with your neurological symptoms and Dr d Cruz has told you you have UCTD and possible with features of dermatomyositis.

Try this approach. When I was young and knew nothing I asked my rheumatologist at first consultation if he thought this was « all in my head. » Surprisingly, je said no and told me I was presenting with signs of autoimmunity but that sometimes it continues to get better as mine seemed to be doing. I was so relieved. And thought maybe it would disappear altogether. So just ask the neurologist if he thinks you are « crazy » or « mental » or whatever! I think you will be pleasantly surprised how often he gets this question and how he can reassure you.

You are going to be the most prepared, interesting and funny patient this guy will see all month!


Lisalou19 profile image
Lisalou19 in reply to KayHimm

You never fail to put a smile on my face 😊 xx

Has your Rheumotolgist ever mentioned Vasculitis Lisa x

I’ve had this mentioned a few times but my bloods say no 🤷‍♀️X

Lisa — your list is perfect. They need to hear things in your own words but succinctly. I think in your case the neurologist knows what he is looking for. Dr d Cruz may give him a note with reasons for his referral. He may mention your positive myositis antibody, particular rash and neurological exam result. You may want to elaborate on which of your symptoms go come on together.

Take comfort that this neurologist is affiliated with a specialist rheumatology center. He knows a lot about autoimmune diseases! Many affect the brain and peripheral nervous system. You are in expert hands.

If he asks why you are there, maybe just say they noticed something on my neurological exam and told me I need to see you and to get an MRI.

Tell him you feel “like the tin man.” 😅


Lisalou19 profile image
Lisalou19 in reply to KayHimm

😂 maybe I wear ruby shoes and pretend I’m dorathy that day 🤣🤣🤣x

KayHimm profile image
KayHimm in reply to Lisalou19


Oh, and there are nerves everywhere. So any symptom — whether it is your esophagus or little toe — could be related.

Lisalou19 profile image
Lisalou19 in reply to KayHimm

This comment is perfect, just reminded me of a couple of speech episodes and swallowing difficulties 😉. You are an angel 😇 xx

Lisa I would write everything down. Take some time to do it and think of everything that is unexplained and concerning to you. I tend to feel like I’m rambling on and it is hard for a visit to go well without a clear understanding of the issues.

My uncle, who is a Doctor, told me a long time ago that they work for us, not the other way around. They are paid and have chosen to work in a field to help others. They can’t solve everything but they should listen and do all they can. With that in mind, understand that the neurologist went to school and chose a field to help diagnose and treat just these types of issues so you do your part by presenting things clearly and confidently and let her/ him do their part.

You have some very strange things happening and you need answers and direction. I pray you get both!

KayHimm profile image
KayHimm in reply to TwoH

Well-said! That is the doctor’s job to get the information they need to help us. Helping us is the goal!

My experience with neurologists is “the weirder the symptom, the better.” When I saw one after a concussion I happened to say, “Oh, that is nothing, just one of my weird things,” he responded, “No, I want to know all the weird things!” In about a minute he figured out most of my symptoms were related to migraine.


TwoH profile image
TwoH in reply to KayHimm

Yes!! I have learned that most unexplained weird things that we all get used to are explainable by someone. We just have to find the right someone to do it! Plus I think we tend to feel foolish because of most of our journeys through these visits.

I was told my hearing loss was not due to Lupus - “ it’s NEVER Lupus” my wise former Rheumatologist said as she laughed and walked out the door. Guess what - that’s why we push and advocate for ourselves!

Hidden profile image
Hidden in reply to KayHimm

They’re very clever people. The one I saw kept asking a question about the next thing on my list before I had a chance to tell him. Thought he was psychic 🙂

KayHimm profile image
KayHimm in reply to Hidden

Psychic — he really was a great neurologist. It does require a lot of brain power and good listening schools to do their work, right? 🧐

KayHimm profile image
KayHimm in reply to KayHimm

Listening skills .. maybe school for some 😅

Hidden profile image
Hidden in reply to KayHimm

From the moment you start to speak they’re beginning to piece together a picture.

Lisalou19 profile image
Lisalou19 in reply to Hidden

I often find I start flapping when it’s time to talk. Then I stutter get all flustered and think “oh my I’m certainly not helping myself here” x

KayHimm profile image
KayHimm in reply to Lisalou19

You are not there to perform for the doctor. He is there to help you. Maybe turn it around and imagine how good it would feel to reassure an anxious person ( who is not anxious at a first neurology visit?!) and then maybe make a tough diagnosis, particularly one that can move a person forward? Dr d Cruz is entrusting him with your care. That is also a privilege.

Who wanted to help a patient like you?!! You have struggled so long and have a challenging and complex illness. Hey, at least in private neurology practices in the US, most of what neurologists see is headaches and « functional neurological disorder » which TT and I hate. So think of yourself as an « exotic » patient. 🐲🦄🦜


Lisalou19 profile image
Lisalou19 in reply to KayHimm

My rheumatologist appointment has been brought forward a month.

Went doctors this morning. I’m so tired from all this. She was really good. She’s running routine bloods, vitamin d, b12 as I’m so low.

Increased anti depressants with the view that I may be suffering from a mental disorder caused by inflammation during flares.

Actually saying this here feels like a weight has been lifted.

I’m so strong both physically and mentally and have such a deep in sight into how I am affected with my ill health.

I think it is only fair to say “I’m not coping”

We both laughed, I told her the story about buying a bread bin 🤣🤣🤣. X

KayHimm profile image
KayHimm in reply to Lisalou19

You are the best patient, Lisa. So honest.

Hopefully this appointment will help you get answers and move forward

I think the list like you've done here should be helpful at the appointment. I guess they know if you've got Lupus / suspected Lupus, so they should be considering neuropsychiatric SLE ( NPSLE) symptoms .... mention things like any brain fog, lack in concentration etc as that may be useful to them / link to Lupus and the brain effects, especially if you're more likely to get those if in flare up, after sun exposure, rather than it's "fatigue brain fog"

It can be difficult as I understand to not want the "mental health label" and not want them to dismiss you, but I do think it's important to mention general mental health issues eg do you get depression, do you ever get "psychotic" symptoms such as the type of things that could be classed under "hypomania" or "bipolar manic things", including episodes of insomnia, as they can be linked to NPSLE / Lupus affects on brain

Please try not to worry the drs are there for you, and to help try get you the best possible treatment

Lisalou19 profile image
Lisalou19 in reply to fabwheelie

Thank you. My goodness I’m so glad i posted.

I have the worse case of insomnia which is worse when other symptoms are in force.

I explain some of my behaviour as bipolar. Only recently was discussing this. Episodes of buying things I don’t need then sending them straight back .

Depression this is the hardest one of all. I go from being so upbeat and then I get floaded with the fatigue and brain fog and find myself fighting suicidal thoughts 😔. I can’t keep up, with the ups and downs .

I take anti depressants and it still comes and goes.

I would never have thought this would have been the field of a neurologist.

Thank you so much xx

Roarah profile image
Roarah in reply to Lisalou19

Please mention your suicidal thoughts to your antidepressant prescribing doctor. It might be a side effect of the specific medicine you are presently on and a change in script might help with this. Suicidal thoughts are a urgent health concern it should be addressed before September's appointment please contact the doctor who prescribed your antidepressant ASAP. Xo

Lisalou19 profile image
Lisalou19 in reply to Roarah

I honestly don’t think it’s the medication. I started taking anti depressants to get rid of them or to help.

The thoughts come from having spent years suffering and feeling desperate to no longer feel what I go through.

They have eased maybe due to medication and also cbt therapy but they still come and go which is enough to send a sane person insane


Roarah profile image
Roarah in reply to Lisalou19

When they do come is there someone you can talk to during the thoughts, a family member or good friend? To me suicidal ideation is more life threatening than cancers or heart disease. I have lost more people to suicide than all other diseases combined in my age cohort circle of friends and family. Xoxo

Lisalou19 profile image
Lisalou19 in reply to Roarah

I know I would never do it because I focus on my children.

During my times of what feels like desperation I put my ear plugs in and put some meditation on. It really helps distract my mind .

I did use to ring my mum but she never understood it. Infact at the end of the call I wouldn’t hear from her for approx 4 days. Then I’d get the random, do you feel better now? 😔

Through my times of struggles I have learnt to be a more caring mother

I guess for that reason the struggle is worth it 😐x

Roarah profile image
Roarah in reply to Lisalou19

I am so sorry you mother does not respond healthily to your illness. She was most likely avoiding you afterwards out of fear, guilt and her own issues or denial but boy oh boy as a mother myself I work really heard to put my judgement, issues and fears to the side when a child reaches out for our help.

I openly talk about mental health struggles with my 12 year old. I want her to never feel as alone as I did when I was younger and in a depression or drowning in anxiety. I thought I was the only one who could not snap out of a funk until I was much older. I also talk about addiction often for my husband's and my family is riddled with family members suffering from it. I have a history of anorexia, which was my control issue rather than alcohol or drugs, so we talk a lot about self image too.

I am so hopeful that societal changes in understanding and acceptance of the importance of mental health will enable our children to avoid many of the side effects of avoiding mental wellness has caused our generations. It is now on trend to practice mindfulness and to treat our psyche as well as we should treat our bodies. I truly believe the two are bidirectional.

Lisalou19 profile image
Lisalou19 in reply to Roarah

My brother has severe mental health. I think as soon as I reached out for help to my mum she thought perhaps I sounded just like my brother and she couldn’t deal with him let alone me.

The sad truth is my little boy was a baby when I started getting really unwell and I needed my mum if not to look after me but to look after my son. A cry for help fell at deaths ears


Hidden profile image
Hidden in reply to Lisalou19

It’s the almost inaudible sigh that you have to listen out for when talking to unsympathetic people 🙄. Especially on the phone.

Buckley123 profile image
Buckley123 in reply to Lisalou19

Thoughts like this are called intrusive thoughts 💭 I get them it’s part of ocd

Have a look into it see what you think 💭 xxx

It sounds you share a lot with Lisalou and SRiley. Am I correct that you have neuropathy and myositis? The neurological stuff is so hard. The fatigue is made even worse with muscle weakness, right?

I am doing okay, thanks. I have what they call “low level CNS involvement” and autonomic neuropathy. My issue is not pain but auto-regulation. I march in place when I buy cereal at the grocery store!

You have a good and realistic approach. There are many losses but too much to live for to give up.


Lisalou19 profile image
Lisalou19 in reply to KayHimm

I am a friends today and took a nuproxen because I couldn’t get up off the sofa.

The pain has now gone.

My dad never had any bloods showing inflammation with his RA.

I’m getting frustrated 💇🏻‍♀️, because I need someone to think outside the box here


KayHimm profile image
KayHimm in reply to Lisalou19

I think your doctors are definitely thinking outside the box with you and ruling out everything. Your neurology appointment is critical, I think. They may not want to treat you without a muscle biopsy. So hard, I know, but they have to get it right. Just a few more weeks. Remember neurologists are also experts in myositis.

You have done great so far! We will get you through until September 2.


Lisalou19 profile image
Lisalou19 in reply to KayHimm

Thank you.

I are a real treasure.

Holding on with both hands 🎢🎡xx

I have two neurologists one prestroke due to migraines, meineres and carpel tunnel and a new one at a stroke center. I adore my neurologists , my stroke neurologist actually was the one who tested for APS not my rheumatologist, but as to offering treatment meds for things other than, migraines, ms, carpal tunnel or nerve entrapment and possibly tumors they have very little treatment options to offer to elevate the symptoms you mention above.

Things like ssri's and anti seizure meds for migraine and overall odd feelings and after my nerve conduction test a brace for my arm and leg were the only options offered. If you are at a high risk for a stroke maybe aspirin or plavix will be prescribed. I just want you to have realistic expectations. Neurological symptoms are not only hard to find the cause they are really hard to treat.

My neurologists, both are at Yale university, send a list of symptoms to check prior to my appointment so they already know our symptoms and then they do the neurological exam, walking heal to toe, closed eyes touch nose, lift eyebrows and smile, count backwards from 100 and subtract 7 sort of stuff. The symptoms check list asks about headaches, swallowing, vertigo, double vision and numbness more than tingling, movement difficulties, confusion and memory loss.

Good luck I hope you are closer to answers.

I get NPSLE symptoms, my worst symptom is hypomania and the first sign I'm in hypomanic episode is that I get insomnia. I've also episodes of depression on my medical record too.... All my mental health issues are post Lupus diagnosis, but drs didn't always make the connection.

My depression has always been "mild" and I always thought linked to a definite reason eg coping with diagnosis, learning my "Lupus limitations", having to give up a career I loved... However the depression plus hypomania made many drs think I was bipolar / "affective disorder". It's only been in the latter years that my drs and any psychiatric professionals have thought it's actually NPSLE ( they now count the hypomania as "NPSLE psychosis" and they now don't think my depression was a "bipolar symptom" but rather a "reaction"/ grief like process after diagnosis ( I rarely get depressed and it's not a deep depression the way a lot of people get, I can "snap myself out" of depression, hence I'm not personally sure about the depression side I tend to agree with my drs current thinking)

The hypomania which I can still get, combined with brain fog ( which I get a lot) was enough to put me in the "NPSLE" category .... I've never had scans etc, or been told it's "full on" CNS Lupus as I think on the "scale of things", I'm "fairly mild" and my mental health these days tends to stay fairly stable, ( it will worsen if I flare up and can worsen if I'm not very sun sensible. I know it's most definitely linked to my Lupus)

I take a mood stabilizer (low dose Quetiapine) which works really well for me to keep me stable

The definition of NPSLE is a bit "vague" as even medical professionals found it hard to decide what symptoms it includes.

This link has some useful info, and will give you an Idea of the symptoms / syndromes that ARC tried classify as NPSLE.

I think some neurological symptoms could be counted as part of NPSLE

I personally don't have the positive "Lupus anticoagulant" / APS but if you have that it's thought to be possible that brain involvement may more common in APS so if they've not checked that perhaps someone should do so

Hope you get answers soon.

Please don't ever be afraid to speak up about your mental health .... good mental health and care for it, is just as important as any physical health

Lisalou19 profile image
Lisalou19 in reply to fabwheelie

I struggle deeply with the ups and downs with my mental health. One day I feel well physically and mentally and then boom I find myself in a desperate depressive state.

I am fully aware of myself and have always felt that my illness changes some sort of balance in my brain.

I experience a burst of energy with spontaneous spending, before fatigued sets in then the skin rashes follow.

I’m off to the gp today to see if I can get anything to stabilise my moods, because this rollercoaster is just too much to keep up with . Also will ask to do some routine bloods to check vitamin D levels etc.

I have felt persistently unwell for weeks now.


Your symptoms seem not that dissimilar to mine in part bar the rashes.

I am in the neuro system. Started in April 2019. I’ve had brain mri, pet ct scan, spine mri. I’ve been diagnosed with mild peripheral neuropathy. In addition I’ve been diagnosed with transverse myelitis which is a rare condition. This was picked up by spine mri. I’ve had loads of blood tests to check for deficiencies and to see if due to my lupus. I’ve been lucky that rheumatologist and neurologist saw me in a special joint clinic.

I have a lumbar puncture tomorrow.

My legs are like blocks of ice and I keep falling over. Plus I have numbness in my feet.

I hope they get to the bottom of things for you. I’ve learnt to be patient and tolerant.

Sounds like you have a good team.

I’ve had my spine mri which showed ware and tear but nothing sinister. X

Just in case it's needed here's some information for anyone needing mental health support

If you are in crisis then you should contact your Mental Health Crisis Support team asap. See this information:

But if you have not been referred or need urgent medical help please contact these crisis support helplines:

NHS: 999 [Emergencies]

NHS 111 [Non-Emergencies]

The Samaritans Tel: 116 123 [24 hours line]

MIND UK charity: Helpline Tel: 0300 123 3393 Text: 86463

SANEline Tel: 0300 304 7000 [4.30pm – 10.30pm daily]

Please stay safe and get help urgently if you need it. Don't suffer in silence people can help you

Lisalou19 profile image
Lisalou19 in reply to fabwheelie

Thank you. X

I used to think I was the only one to go to a neurologist on this forum, the majority go to rheumatology.

I’ve been seeing my neurologist for 2 years now, he was the one who diagnosed me with Lupus and Rheumatoid Arthritis. I have regular blood tests and appointments. Also after a full spinal MRI he has referred me to a back specialist.

I hope Lisa you get some answers at your next appointment.

Lots of good advice here.

It’s hard to appear happy when your going through so much.

I am at present using the Sleepio App to help with the sleeping.

Sending you 🤗 x

Lisalou19 profile image
Lisalou19 in reply to Jhpc

Thank you.

I use an app called calms.

It really does help on top on taking metazapine and amitripulene. Without the medication by brain doesn’t go to sleep .

So frustrating. I was also such a good sleeper


Hi Lisalou. I think what you have written here is what you take on your list of questions to the neurologist appt. Never be afraid to ask many questions. It's a 2 way appt. I so hope you get some helpful answers and hopefully some treatment.

Look forward to hearing about it. Best wishes! 😊

Thanks for starting this thread. I share so many of these things I’m getting very nervous. It’s good to read the long number of replies x

KayHimm profile image
KayHimm in reply to Lupiknits

These neurological symptoms can be scary, right? There are many episodes when I felt strange but passed it off as my « stuff. ». The neurologist does thing I have had some « hits. » Now I know to call 911. It is important to share our stories and help each other.


My neurologist diagnosed likely Proximal Myopathy and mentioned testing for MG if it seemed necessary in time to come. He was really nice but I haven’t had any follow up since and I’m not sure there’s anything he could do for me xx

When I recently went to a neurologist at the Cleveland Clinic in July this year, I took a list of all my symptoms and let her sort it out. I knew some of my symptoms could be from the Autonomic Nervous System. I took a copy of my brain mri and the report. There is no indication of MS.

I have many of the symptoms you have. She diagnosed me with Functional Neurological Disorder. She couldn’t say for sure if it is Lupus related.

My main symptoms are: tremors in hands, pins, needles and numbness in legs, arms, feet, face (one sided sometimes), vibrations in my legs like I’m plugged in to something, burning , muscle twitches and the feeling that my body is stuck in the fight or flight mode.

She’s treating me with Gabapentin, but it has caused my vision to get blurry and my legs swell from the knees down. She wanted me to gradually increase to 900 mg a day, but I am only taking 300 mg at night. I’m waiting for a call from the Clinic about the situation. I also take Zoloft which has made me a bit more calm.

Best wishes to you and tell the doctor everything.


Roarah profile image
Roarah in reply to Finn523

Finn, not sure how you feel about CBT or if you tried it already but it has done wonders for my post stroke centralized pain which is similar to functional neurological disorder because my brain, post stroke, needed to reroute due to dead areas and this caused certain areas responsible for interputing pain to go into overdrive. It is also linked to excited glia cells, i.e. Brain inflammation. Gabapentin helps to dampen down these issues but so do meditation, mindfulness, hypnosis and CBT. I have been able to avoid gabapentin for now by adding CBT to my regime. Good luck.

Finn523 profile image
Finn523 in reply to Roarah

Hi Roar ah, I'm sorry you had a stroke. I hope you're much better now.

I don't mean to sound stupid, but what is CBT? Do you mean cannibus?

I'm doing mindfulness and meditation now. Just started a program recently called 10% Happier. I do it at home. My sis-in-law bought me a year pass!

I've done some meditation in the past years ago so I am familiar with a lot of it.

I'm glad the CBT helps you. I want to get off the gabapentin!

Lisalou19 profile image
Lisalou19 in reply to Finn523

Cbt is cognitive behavioural therapy.

I’m currently doing this and it is most helpful.

I use an app called calms and do meditation every night. It really is such a positive step to take in helping feeling better.


Finn523 profile image
Finn523 in reply to Lisalou19

Thank you! I’ll look for the app 😊

Hidden profile image

I have almost identical symptoms to yours (and a few more!) and have just been provisionally dx with Sjorgens by a neurologist. Will be having extensive tests and skin biopsies to confirm.

Sjorgens is often a secondary autoimmune to Lupus. In my experience, rheumatologists aren’t brilliant at dx autoimmune other than RA.

Write a list of your symptoms and discuss with neuro. You’ll find that a conversation will soon develop as he picks up on your points.

Could be something like cmt.

Dear Lisalou, how can I mend your brokenness, how can I stop this rain from falling down, stop the world from spinning. You are a remarkable person, I am with the hubby's here, try to see a neurologist, they are the gate keepers so to speak. They are the ones who look past all the darkness, and do come up with some conclusions, will also give your other Dr's a run a bit. I have seen one for years, when all others gave up on me, and he came to some very surprising and fair answers, that spun the heads of the other doctors. I had lyme disease, and nero nerve dysfunction, which was the cause of the maze of symptoms I presented with to other Doctors. If it wasn't for him, I would still be in the maze of "we don't know". For that I was thankful. I pray you will find comfort, relief, and answers soon. peace, blessings thestorm

My daughter has been recently diagnosed with NMO and this is also an autoimmune disorder , she is now with neuro although she also has SLE and IPLS, nephritis, RA and many others . If anyone else has been diagnosed with NMO I would grateful to hear from them as this is another setback . She sees a rheumatology and an immunologist and went blind 5 years ago in left eye so I suspect this NMO diagnosis should have been then as MRI scan showed multiple lesions .

Hi Lisalou. Sorry to hear you're having such a bad time just now. Have you ever been prescribed an SSRI to help ease your depression? Just a thought. I've taken one (Venlafaxine) for more than 10 years and I do find it helpful. Hope all goes well with the neurologist.

Lisalou19 profile image
Lisalou19 in reply to MEGS53

I do take mirtazipine just increased from 30 to 45mg

It’s so difficult to tell if I’m mentally not well or my illness is making me mentally unwell


MEGS53 profile image
MEGS53 in reply to Lisalou19

I agree, 100%. But, if SSRIs help then, so I've been told, you have a 'physical' problem, ie an insufficient amount of serotonin (the 'happiness' hormone) which the drug is able to help correct. Take care. xxx

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