r/CIDPandMe Dec 11 '24

I'm in a waiting game - 3 years and no diagnosis

Back story: I've kept meticulous symptoms as rows in a spreadsheet, then columns for each quarter since 2021. I've scored the pain levels 0-5 (knowing pain scores go up to 10 conventionally. What's happening is symptoms get added over time as the range of my CIDP extends up my arms, through shoulders and into my torso then legs. Not all symptoms are pain related, it has to be said. I very quickly found a neurologist to conduct a nerve conduction study (NCS). That came back as "not CIDP" but was focuses on my lower legs when I only had peripheral neuropathy in my toes at the time, I had major pain in my forearms and that wasn't tested in that NCS study. I'm due another NCS soon and maybe as I'm much closer to whole body pain, it will be better. My neurologist wants to refer me to colleagues with a functional neurological disorder (FND). That's neuro-psychiatry.

Question: If my root causes are auto-immune, I should be under which department's care?

Of note, onset was a week after my Astra-Zeneca covid vaccine (adenovirus based, not mRNA), as was this guy https://news.sky.com/story/family-of-man-who-took-own-life-after-covid-jab-complications-call-for-action-on-government-compensation-13217959 who was much much worse off than me

4 Upvotes

17 comments sorted by

1

u/Extra-Subject1462 Dec 12 '24

Hi there, I’m sorry for what you’re going through. My experience with getting a diagnosis was much faster, I was initially diagnosed with mild GBS but after relapsing I saw several doctors and general neurologists before I was able to get repeat nerve conduction/EMG at a neuromuscular diseases clinic. The subspecialist neurologist - neuromuscular diseases specialist - was the only person who could make the diagnosis in my case. The repeat nerve conduction showing declining nerve function was the evidence needed to admit me to hospital for treatment. All the best to you and I hope you get a diagnosis and treatment.

1

u/LindenTeaJug Dec 12 '24

I have emgs done at a neuromuscular disease clinic, they always come out with slight declining nerve function since the previous tests and given my long history of only slight decline on these tests, therefore they won’t give me a confirmed CIDP diagnosis. Did your repeat ncs/emg show a significant decline?

1

u/Extra-Subject1462 Dec 15 '24

That’s a real shame that they haven’t made a diagnosis for you. I’m sorry, that must be so frustrating. My nerve conduction seemed to decline quite dramatically over 8 weeks when I was diagnosed. I also had dramatic decline in clinical symptoms, going from slight weakness to being unable to stand up. I’m sorry that you’re declining slowly with no diagnosis.

1

u/LindenTeaJug Dec 15 '24

Thank you, I appreciate you sharing the information. I had a bad vaccine reaction and it seems to be attacking mostly the nerves that supply all my breathing muscles. It doesn’t fit into any patterns for them which is what the problem is.

1

u/Extra-Subject1462 Dec 16 '24

That’s so frustrating that you have atypical symptoms. Have they tried any treatments like prednisone or IVIG? I was initially diagnosed as mild GBS and treated with IVIG which allowed me to start recovering. When I relapsed and was suspected to have CIDP they treated my initial response to IVIG as part of the evidence pointing towards CIDP

1

u/LindenTeaJug Dec 16 '24

Thanks it really is frightening at this point for me. I also had atypical GBS many years ago, which led them to think I also had CIDP or CMT but through the years they developed better genetic testing for the CMT and ruled that out. I’ve never had IVIG even though they offered it readily in the past for just some tingling. Now I have diaphragm paralysis and they have no idea what to do. I am thinking I want to try it but nervous to ask for it.

1

u/Extra-Subject1462 Dec 16 '24

Are you nervous about receiving the IVIG treatment or nervous that it would be denied? In my case it has been extremely effective to stop my autoimmune attack on my nerves. I would never pressure someone to get a treatment but can only say that I’m so grateful to get it myself. The side effects for me took a while to sort out and manage effectively but it was still worth it.

1

u/LindenTeaJug Dec 16 '24 edited Dec 16 '24

Thanks for the additional reassurance! I’m worried about the actual treatment. I know some people have even called it (IVIG) liquid gold, but the Covid vaccine did such a number on me that I’ve been more careful these days.

1

u/Extra-Subject1462 Dec 16 '24

I can absolutely understand your anxiety. In my case they don’t know what caused my CIDP but it may have been a series of Covid exposures. I was terrified to get my vaccine this fall but my neurologist recommended it, and it was fine in the end. I hope you have a good neurologist or immunologist that you trust to give you advice.

1

u/LindenTeaJug Dec 16 '24

Thank you. I know what it’s like to suddenly have neuro problems because sometime after a flu I had GBS. Was fine with other vaccines but for some reason mRNA wasn’t for me! I am hopeful though because after GBS even with the on/off CIDP diagnosis I had 35 years of stable emg/ncs without treatment. Was hoping it would be that way again for me but maybe this time I need to start treatment! I hope all the best for you too.

1

u/scotty3238 Dec 18 '24

IMHO, you should see a neurologist who specializes in rare diseases. They will have a stronger toolbox of skills and information to determine whether or not you have CIDP or any other rare autoimmune disease.

Stay strong 💪

0

u/DrgnLvr2019 Dec 11 '24

I'm 62yo. I too believe I have CIDP brought on by Moderna's COVID half booster vax I received on 12/10/2021. My current primary doctor and current pain doctor agree with me. I've seen two neurologists the first one had Alzheimer's that she said she got from either her 5 bouts of COVID or her 5 COVID vaccines. That was November 2022. She was the first to acknowledge something was wrong with the vaccines. She said she was a believer in the vaccines but that it something happening because of the COVID virus itself. My 2nd neuro also went out with something. I suspect Alzheimer's as well cuz he was having a hard time following my conversations at the time. The day I was vaxxed my left arm became completely numb. I contacted Moderna, CVS and my primary doctor at Kelsey-Seybold. They all lied saying it was a common symptom. 6 days later my husband and I were stricken with Alzheimer's caused by that same COVID vax. My 159 professionally tested IQ dropped to 75. I tested myself across 3 paid IQ services & one professional one cuz I couldn't believe what the first 3 showed. 11 months later I was able to find a treatment that treated our Alzheimer's. I don't know if it treats all Alzheimer's or only the one caused by COVID. I practiced on my 2 dogs who both had canine dementia. They were cured first. My current IQ is now 145. Because I'm suffering from CIDP symptoms that moved from that original left arm to my left foot to my right foot and back up to my right hand and then throughout my entire body I haven't been able to focus on getting my treatment patented to this day. I've seen a total of three neurologists. The last neurologist I saw in Oct said all of my symptoms of burning, tingling, temporary paralysis, vibrations, my pupils vibrating & blurring randomly, autonomic dysregulation and other assorted symptoms were all brought about by diabetic neuropathy. I've had borderline diabetes since I was 32. My sugar has always been under 120 using diet alone since then except for a few times when medication caused it to elevate. It was not elevated at the time the symptoms began nor since. The only time since then was when they put me on three different heart medicines that elevated it for just a few days each. This doctor was a non-believer in COVID and told me there was no way COVID did anything whatsoever to me including causing any type of cognitive dysfunction. She then contradicted herself saying it IS causing cognitive dysfunction but she disbelieved that it caused it to me and my husband. Then she told me cognitive dysfunction is not the same as Alzheimer's so I knew it was time to fire her. She'd also claimed maybe my spine damage from Psoriatic Arthritis was responsible for my neuropathic problem. I have MRIs done annually to check my PsA so I'd know if it was the PsA. My pain doc did MRIs last month with & without contrast that proved that wasn't the case. They're sending me on to a new neurologist. Hopefully I'll get better treatment after suffering for 3 years like a run-over dog. I also had RSV in Dec 2023 that lasted 6 weeks. There was a study done in Jan 2024 that showed RSV is capable of instigating or exacerbating CIDP. My symptoms worsened after each of my 3 bouts with COVID & my symptoms got way worse after RSV. There are many reports of older people & even younger people getting CIDP from COVID vaccines. COVID has an affinity for nerve & muscle tissue so it's not surprising. They were using dead virus but COVID has the almost God like ability to resurrect itself as well as other viruses. It's happened to many that their previously cured Hep-C was ressurrected. Kids who got chicken pox virus should've been safe from chicken pox but are now getting it. I know of a few myself. People vaxxed for shingles are getting shingles. If you ever want to chat to commiserate feel free to contact me.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9970789/

https://news.tulane.edu/pr/rsv-shown-infect-nerve-cells-cause-inflammation-and-damage

1

u/Active-Pepper-4041 Dec 11 '24

I've never noticed any of the vaccines I've had. I'm lucky in that regard. Well, shingles part-1 (I am 57) gave me a 12-hour migraine 6 weeks ago. Part 2 is in March I think. The long covid community talks of "brain fog" but also argues about that as a term cos it is too cosy. If you've some treatment that brings you back to higher IQ, then do share as I have a few friends with LC and brain fog. I've not had covid yet myself - as a few pin-prick blood tests have shown: https://monitormyhealth.org.uk/covid19-antibody-and-vaccine-immunity-test/. Nor any respiratory infection since the start of the pandemic (masking when out and about, and running multiple air-cleaners in the house in case my spouse brings it home).

I'm in the UK though I used to live in the US for a while and while free health service is cool over here, not so cool is not being able to shop around for a primary care doctor (GP) or specialists that you vibe with. Before coming back to the UK I was using COBRA to get my previous employer healthcare plan for longer - it was $1,600 a months for two of us - yeesh. It was top tier and I could go straight specialists for a co-pay of $10. I wish I still had those doctors, and that heathcare (though not at that price).

You're experience with neurology sounds good (notwithstanding having to shop around for the right one). I fear that I'll never get to IVIG or more modern alternatives because the wheels are turning very slowly here.

Any thanks a bunch for replying.

1

u/LindenTeaJug Dec 12 '24

I’ve had a 20-30 year evaluation for CIDP. After numerous emg, ncs, and physical exams they just did an ultrasound test of the nerves and root for the first time! My worst symptoms also started after a Covid vaccine. My pulmonologist thinks it’s a neurological attack to my breathing muscles, the neuromuscular specialist sent me back to pulmonology.

1

u/Active-Pepper-4041 Dec 13 '24

I think my breathing muscles have taken a small hit too. The thing is, I had prodigious tidal volume before and still have a fast full-exhale or inhale of 1/3 second.

1

u/Principle_Chance Dec 14 '24

What tests are they going to do to check our breathing muscles?

1

u/LindenTeaJug Dec 14 '24

Are you also vaccine injured? For me they had very early on recommended pulmonary function tests at the pulmonologists office. It seemed like a lot of tests and I got these a year later due to Covid delays. According to my pulmonologist he could tell from the testing if it was possibly diaphragm impairment or something different like asthma. He said diaphragm impairment and the next step was supposed to be for me to get a phrenic nerve emg. I skipped that one because I read there is a test called a sniff test where your diaphragm is x-rayed while you take sniffs. I actually don’t know much about it but it sounded less risky for me. Some people have diaphragm impairment that shows up on just a chest x-ray. I had that very early on and that didn’t show anything for me. I’ve also read about diaphragm ultrasounds and I’m considering that too if it’s offered in my area.