Neurological symptoms

[Byourownadvocate]

APS patients with neurological issues. Looking to hear treatment plans for patients also suffering from neurological issues. Any meds, treatment that has helped?

[MaryF Administrator]

Hi, it is certainly important to work with right consultant to get to the bottom of any difficulties and treat anything, I know for me, my migraines were greatly helped by Aspirin, but also having B12 injections helped me to a certain extent. I have a terrible problem taking any drug so I have to be very very careful due to extreme allergic reactions. My daughter does really well on Plaquenil, but it made me very ill. MaryF

[mully]

Hi I suffered from demyelination of brain and spine, I had 6 months cyclophosphamide (and warfarin of course INR 3-4) then had 16 years without any further neurological symptoms, God bless Louise cootes lupus unit ! HaHa

[LindaMorrell in reply to mully]

I am at present on a treatment called Rituximab it’s an infusion once every 6 months wiping out 85% of lymphocytes I believe.I am being treated for antiphospholipid syndrome, multiple sclerosis and systemic lupus, these have caused thrombosis in the brain along side possible demyelination !

Does it work? I don’t know! I had my first therapy Dec. And have the same every 6 months.

Hope you get a solution

Linda Australia

[Byourownadvocate in reply to LindaMorrell]

Best of luck, I hear that’s a standard treatment they use. Are you seeing any results after the first treatment? I hope 🤞🏻. Can I ask if they diagnosed based on finding of MRI, other scans, spinal tap? I just finished another round of plasmapheresis and didn’t have the results I was hoping for. Waiting to see what’s next for me. Keep me posted, wishing you well!

[LindaMorrell in reply to Byourownadvocate]

Yes. blood tests, mri brain and spine scans and lumbar puncture . I am on aspirin, large amounts varying of warfarin and BP tablets

No significant results yet. This therapy not common here. Very common in Sweden I believe and good results. I was told won’t cure but should help to slow it down

I haven’t had anything to do with plasma. That sort of sounds positive. Hope it is and wish you good luck too

[LindaMorrell in reply to LindaMorrell]

Out of interest could I ask your age. I am 63

[Byourownadvocate in reply to LindaMorrell]

I’m 54. Was diagnosed with lupus and APS in my 20s. Have suffered neurological problems for last 2 1/2 years after developing double vision and blurred vision, was told atypical MS, told I’m crazy, told just deal, told “don’t know”…I’m getting help now and luckily found this site…helps keep me sane 🤪

[LindaMorrell in reply to Byourownadvocate]

Yep know exactly where you are coming from. Looking back I think my first episode was a blood clot retained placenta after I gave birth 17 yrs old. Nothing even mentioned about why. Jump 28 years I got a lot of inflammation in my right eye, uveitis iritis Then found out inflammation in lungs heart kidneys and eye. Steroids and diagnosis SLE. 2 years later facial numbness APS suggested. Warfarin suggested but chose to only take aspirin. All great for quite long time. Just great like a normal person.Had short period if swollen joints over about 18 months. Resisted steroids just took gelatine. Was amazing.

2016 APS back in the forefront Think the test you may know.

I will keep you posted

[sydb in reply to LindaMorrell]

Do you mind if I ask what dose of aspirin you're on?

[WendyWoo50]

I’m seeing a neurologist on 24 February. After trying just about everything for migraines over the years and being on beta blockers for my heart already, I now take Candesartan every night. It’s been a miracle.The appointment is to discuss the ‘electric shock’ sensations I get throughout my body as well as ‘sore’ skin. Very unpleasant.

Does anyone else have these feelings? 💋 x

[Momba49 in reply to WendyWoo50]

You mentioned “sore skin” i have gad aps over 20 years and have had this soreness in my legs. If touch my skin with any pressure feels sore. Is this what you experience??

[WendyWoo50 in reply to Momba49]

Yes definitely. A dr told me that was fibromyalgia but I’m not so sure? I also get feelings like electric shocks sometimes when touched. It can be anywhere mostly arms then legs. X

[Momba49 in reply to WendyWoo50]

I only have soreness , no shock feeling. Wish they knew more about APS. My MD only concern is INR and clotting

[Byourownadvocate in reply to WendyWoo50]

Hope your appointment goes well

[KellyInTexas Administrator in reply to WendyWoo50]

I get “low vibration buzz” in my shoulder if I have my purse strap on that shoulder.

Just yesterday I was doing the grocery shopping and I thought my cell phone was buzzing on vibrate in the outer pocket of the bag. It pulse in the same buzzing rhythm…

My hands do it also from the steering wheel vibrations when I drive. Usually they will need to be a little cold before I drive beforehand. It’s quite severe- this.

[LindaMorrell in reply to KellyInTexas]

Hi Kelly I too get this buzz thing. Not very often I did put it down to my phone but often realise that’s in another room. Drives you crazy if you let it. Also keep thinking I am getting stung by a wasp or bee. Again quite intermittent. Sharp electric shock like pain covering very small area. It usually happens not far from where the removed a leg vein for my heart. Initially put it down to that. Now realise it’s to do with the MS side of things It happens infrequently but will mention before my next rituximab infusion in August.

Just another sensation to add to the list

Keep smiling everyone. Well as best you can

[KellyInTexas Administrator in reply to LindaMorrell]

Im also on Rituximab, Linda. I have been for 2.5 years I think.

I don’t have any insects stinging me, thankfully!

Was every 6 months, now every 4.

1000 mg administered as a “set” . Each infusion is 1000mg each and two weeks apart.

It’s not helping as much as we would like, but the question would be- would it be worse without it? We suspect yes.

Some sets seem to yield better results than others . ( less flares. ) less clotting.

My neurologist wanted to ivig to mix but hematologist said no. ( I also got a bit clotty as the first infusion day came.)

Im sorry you have MS. You don’t need any more abbreviations in your life! ( MS/ APS. )

Too close to Mishaps. Miss APS or Mishaps?

New password!

[LindaMorrell in reply to KellyInTexas]

Very interesting Kelly. Up to your message I didn’t know anyone else on it. Did they tell you your immune system would be extremely compromised. ??? Nurse told me to be masked (double) and extremely careful for 1st 3 months due to vulnerability then the next 3 months just be aware

I even cycle, well electric cycle, due to weaker legs with my double mask . Just have to keep moving.

Will be great to hear your progress on the infusions and the rest.

All the best Linda

[KellyInTexas Administrator in reply to LindaMorrell]

Very careful two weeks prior as well. Two weeks after - critical, then two months after that also mindful.

Then I prepare again really.

I’m on a Mast cell stabilizing “cocktail.”

I’ll private message you with it. From neurologist. Good for rituximab also. I take daily.

I also an prescribed 20 mg prednisone ( but it spikes my inr up too high to take orally plus upsets my tummy) so instead I take 40 mg solumedrol IM each of the 3 days prior to infusion and the day after.

If I’m outside, in open air I don’t mask if I’m at least 12 -15 feet from others- not crowded. If a group is passing me, I just hold my breath very discretely.

Beyond that I double mask as my doctors have said to.

I have found scarves to be life savers. I use them for opening doors. ( before pandemic. )

I wash a lot of scarves.

Don’t forget, only soap kills stomach virus.

Order medical grade disinfecting wipes from a medical supply- one that kills nosocomial ( only live in hospitals- hospital borne) infections. Good for cell phones and steering wheel of car. ( I’m in hospital so much I’ve picked up acenobactre. Known as Iraqibacter. Its been very difficult.

Otherwise I’ve been ok- so far. ( other that salad.) no salad. ( at a restaurant.) No raw veg unless you yourself peel the carrots / apples.

No cold cuts- did you know that one? More likely to cause food poisoning also.

[LindaMorrell in reply to KellyInTexas]

Wow most informative. Look forward to your message

Kindest Linda

[daisyd]

Hi

I have hydroxychloroquine for balance /falls / clumsiness/ space awareness

Need to have the ones made by Zentiva as they are the same as placqunil others have fillers which give people a lot of side effects

Warfarin has cleared brain fog better when inr over 3 range 3-4 memory still really bad clexane when inr below 3

Betahistine for dizziness, it’s for menizures disease which I don’t have but it works

Lamotrigine for epilepsy caused by clots

Good luck

[KellyInTexas Administrator in reply to daisyd]

Thank you for that Daisy. In the USA look for manufacturer “Sandoz” as it does not have the fillers that can cause so many side effects.

[Crose86 in reply to daisyd]

Do you find the Hydroxychloroquine helps with the balance issues Daisy? I am really struggling daily with this and have just started on Zentiva Hydroxychloroqine 2.5 weeks ago along with daily Asprin. No improvement so far 😬

[Byourownadvocate]

I thank you, best to u too

[Lure2]

Hi again,

I just answered your question about selftesting.

But I thought you had a Specialist for your APS...... It sounds as your Doctor does not know that

we have too sticky blood that has to be correctly thinned all the time so we do not have those typical neurological symptoms you describe above when the blood is not thinned enough and all the time.

So see to it that you read about APS and learn about this curious illness we have here.

Buy also "Sticky Blood Explained" by Kay Thackray. She has got those neurological symptoms also like you and I have and prof Hughes has said that it is a very good book about

APS and I agree with him indeed.

We need anticoagulation och a Specialist in autoimmun illnesses that also know about the

other autoimmun illnesses that go hand in hand with APS like RA, Sjögrens, SLE and even Hyper- and hypoparathyroidosis plus other also.

[sydb]

I have what could only be described as dementia. I'm losing the ability to comprehend language, and that's my super power. I have "memory holes" where I can't remember entire chunks of my day. I also am quite derealized - feels like I'm in a dream and am seeing the world while in a sandstorm. I don't tolerate blood thinners very well, but am going to retry them. I'd be all for trying anything at this point.

Has anyone tried pentoxifylline? My doc mentioned that.

[Byourownadvocate in reply to sydb]

From what I understand a cognitive function test can be performed by a neuro-psychiatrist to assess. It is a very long test (5-6 hours) and the doctors want you in best shape to evaluate. I was told that would require control of medical problems and any anxiety, depression symptoms. I’m not familiar with any drugs or treatment fir these symptoms. I was just looking for confirmation of my struggles and to be able to evaluate any improvement or decline. From what I’m seeing, many patients have some degree of “brain fog”. In some patients it can be a result of other problems with the disease. This has been my experience and I’m working on a solution. Good luck to you. Keep me posted if you have any luck at relief!

[sydb in reply to Byourownadvocate]

Good luck to you, as well!!

🌻

[Greenmil3]

Hi sorry not been in for a while. My APS only affects me neurologically and they don’t have a treatment for me just warfarin and hydroxychloroquinone and statins to try to stop further brain damage. I have been told I have had multiple minor strokes hence the issues and yes the neuro exams are not fun. I am now treated by both Prof Hunt in Heamo at Guys and the National Hospital for neuro sciences and neuro surgery. I hope all goes well with you

[Lure2 in reply to Greenmil3]

Hi Greenmil3,

I also have neurological symptoms from primary APS and had a lot of microembolies and TIAs before Warfarin. Not until I was allowed to stay at a rather high INR around 4, I am quite well but with a bad memory.

These microembolies are very unique for us with APS and most Doctors still do not know this rare illness and understand that we have so sticky blood and that is the reason for our symptoms.

It is sad when they think we make up things and are lying etc as you told us one month ago.

Some people with Covid-19 get a "after Covid-19 " with a lot of neurological symptoms like we have with APS. It is a sort of brain-stress of course but we have more than that.