Too many diagnoses

[ndstephens49]

APS confirmed 2010. CVID confirmed 2015. Also vasculitis, non ischemic cardiomyopathy with heart failure, 2001 non Hodgkin lymphoma. BUT worst symptoms identical to MS--trigeminal neuralgia, leg/arm weakness, GI Issues, more. Antimyelin antibodies elevated. Anyone else in this boat?

[MaryF Administrator]

Hi, many on here tell a similar story, Hughes Syndrome/APS is tricky enough but often low D, B12 deficiency and Iron being low accompanied by Thyroid and gut issues, which do often improve with gluten elimination all play a part. I hope you have a good specialist. MaryF

[ndstephens49 in reply to MaryF]

WOW. Have low B12, low vit D, and just now have found I am low in iron so it's back to gastroenterologist for me. WAH. No thyroid issues. BAD gut issues. Not any specialist I have found locally. Make some trips to Cleveland clinic and Johns Hopkins when desperate. My GP and I muddle along. I bring him info from Hughes Website, he reads, then we decide what to do together. He is very open to suggestions but I am his only patient with APS.

Have u heard if any APS patients with ms symptoms have been treated with ms drugs with any benefit? Gonna need a wheelchair soon, otherwise. nancyd

[ndstephens49 in reply to ndstephens49]

Maybe my question should be "Does anyone know a good specialist in southern West Virginia, USA?"

[MaryF Administrator in reply to ndstephens49]

There are many members on here from the USA, you could put up a specific question asking that! It is not unusual for us lot to gain a thyroid problem, be aware that often people are told they are fine as the only test often used is the TSH, I would do a much more detaled set of tests to rule it out. MaryF

[ndstephens49 in reply to MaryF]

Great idea!

[ndstephens49 in reply to MaryF]

OMG. Just read about hypothyroid. Have only had T3 and T4 tested. Many of my symptoms are of hypothyroid. I have a strong suspicion you have hit on something. My legs and arms feel like lead. Can't stand more than 10 minutes to cook or hold arms up to blow dry hair. See GI specialist Thursday. See him due to big hemoglobin drop and GI issues. Pretty sure he will run full thyroid blood panel. I am very hopeful and thank you from the bottom of my heart. Nancy

[MaryF Administrator in reply to ndstephens49]

This is what I have done:

TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

My B12 was borderline low also, plus lowish iron, plus low D, all this combined with the Thyroid being off, made everything worse. I am also on Natural Desiccated Thyroid which works very well for me.

Important to test for Thyroid antibodies also. I also am gluten free these days also.

MaryF

[ndstephens49 in reply to MaryF]

Iron, B12, Vit D, Mg are low now. CRP for me varies from normal to about 31. Had T3 and T4 tested but none of the other tests that I can recall. Hga1C has been normal. Thank you so much. I will get these done ASAP. Nancy

[KellyInTexas Administrator]

Nancy,

I'm kelly- from Texas!

I'm still learning many things- I'm 48- recently diagnosed-only 4 months ago after a major clotting event : DVAt in arm and positive antibodies. no thyroid problems. MANY GI problems over last 20 years. Multiple abdominal surguries for Ileus. I also started presenting with gait disturbances- was Investigated for non acute transverse myelitis- MRI was clean. I am now told APS can mimic MS.

I have dysautonomia- also retrospectively looking at gut issues my gastro doc thinks likely small hypo profusion if bowels. ( micro clotting,) X-rays showed air in bowel loops. I would do this all the time.... always at 4:00am...

So thinks to think about from what I have learned? Dysautonomia can affect gut and can cause MS like symptoms.

Could be a little touch of that in addition to thryoud ? It's tricky to spot.

[ndstephens49]

Hi Kelly from Texas! My husband's brother lives outside of SanAntonio. Also, my son Patrick who lives here in West Virginia, also practices law outside of Dallas in a little town named McKinney.

U may be right about GI issues. I probably have a double whammy going on as the immune deficiency (CVID) I also have causes severe GI issues. In about 2 wks I get to have GI endoscopes, both upper and lower, because my hemoglobin is dropping. I'm losing blood somewhere. Also lots nausea, vomiting, diarrhea.

My first symptom was trigeminal neuralgia, nightmarish jaw pain, caused by micro vascular ischemia to jawbone causing osteonecrosis. Trigeminal neuralgia mostly occurs in MS.

My biggest problem now is leg weakness. I can't walk a block or stand for very long. I'm wondering if this may be due to hypothyroidism. But I guess it's just as likely due to additional MS-like symptoms.

I've had very bad luck getting anything diagnosed or treated properly. Even thought I've made multiple trips to Cleveland and Baltimore ( big well known clinics there).

Had best luck with dr Charles Glueck at Jewish Hospital in Cincinnati. He diagnosed me with multiple clotting issues, but not APS, in mid-nineties. Put me on Coumadin in 1996 which helped with jaw pain.

It's bad enough to have a challenging medical condition but having to deal with medical personnel who are unacquainted with it is very frustrating. I've been forced to advocate for myself which is difficult for me.

All we can do is 'keep the faith, baby,'

Good luck! Nancy

[AnnNY]

I'm somewhat in your boat. I was found to have the anti-Myelin IGG antibodies, and MS like symptoms going back to the 80s. (I believe this is an old test, because when I took the results to rheumatology center in NYC they didn't really know what it was, although they knew it was something). I also have lupus-like UCTD and was put on plaquenil in the 80s. That really helped with a lot of the MS like symptoms at the time.

I did my own research when I found out about the anti-Myelin antibodies. Through reading old articles from the 90s, I was lead to Dr. Hughes' work and Hughes syndrome. Now days instead of doing a single test for Myelin antibodies, they have broken it down into the components of Myelin. When I went to an APS specialist she found I had more specifically Phosphatidylserine AB - IgG, which is known to be a secondary APS antibody. (There are a lot of secondary antibodies.)

Being on anticoagulation has helped a lot of my neuro symptoms, but I have neuropathy in both my arms and legs. The weakness isn't as bad as the pain. I was taking Klonopin and Tylenol #3 until our CDC scared the heck out of doctors that if I was on both at the same time I was going to die. I recently stopped benzodiazapines and found I could sleep relatively well without them, but it seems the Klonopin was treating my neuropathic pain and I'm in a lot of pain now after stopping it. Unfortunately, the CDC wants to also take away pain relief by making even codeine a problem to get a prescription for.

I'm glad you have a good GP who is helping you along. I think they are just learning about these secondary antibodies, so I think we will just have to deal with some uncertainty. Maybe I'm wrong, but that is what I'm getting from my reading.

[ndstephens49]

Hi AnnNY! Your comments make so much sense. So now I'm thinking the leg and arm weakness could be due to hypothyroidism or MS symptoms since antimyelin antibodies found to be positive in 1990's by Dr Carol Koski, neurologist , in Baltimore

You know, it's hard to believe I make so many autoantibodies when my immune system can't make normal antibodies due to the immune deficiency (CVID). I have to get gamma globulin antibodies every four weeks to replenish my system due to defective B lymphocytes which can't make normal antibodies. How is this possible?

When I was younger I wondered why I always had sinusitis or bronchitis or pneumonia or some other odd infection (cat bite fever, mrsa on non healing fingertip ulcers, etc). Now I know it's due to the CVID which was only diagnosed 2 years ago. My APS is probably secondary to that

I still have daily headaches which started in childhood. At about 15 years of age I discovered the miracle drug-aspirin. Since 15 have taken loads of aspirin for headaches. Even during all three pregnancies I took aspirin cause no one told me not to. That likely prevented miscarriages. Buy them at Walmart in bottles of 500. Currently take 6-8 a day. Also added low dose naltrexone in October. (lowdosensltrexone.org). It was discovered in your neck of the woods. It helps enough that I no longer have to take opioids with the aspirin. Naltrexone is supposed to help neuro symptoms as well. You may want to look into it.

I think my GP is losing it. When Alere Home Monitoring contacted his office this week to get OK for CoaguChek meter, he told them he didn't manage my INR anymore. Poor guy, he is so nice and all this is getting to be too much for him. So I diplomatically have to straighten this out when I see him 4/11. I need him. He is only doctor in 1989 that did not tell me I was crazy.

Good luck with all your issues and research the naltrexone to see if you think it will help you. Nancy

[Fezzywig]

Greetings Nancy. It seems that you and I have a lot in common. I have spent a little time reading through some of your posts and following the threads finding that your experiences are frequently just like my own. If my calculations are correct we must even be the same age, having been born in 1950... .? That seemingly simple fact alone explains the similar trajectory our lives have surely taken.

I look forward to sharing some medical history and information with you, but I do need to let you know that my current health status is not great and more importantly unreliable. What I am awkwardly trying to say is that my energy levels often completely run dry on me, without warning. I’m hoping you will understand when I must abruptly bail out of even the most interesting exchanges without much explanation. btw, I am close to ‘empty’ right now.. but, I really did want to reach out to you and just introduce myself, hoping to create some connection. For the record, I live in Texas, I have congenital cvid, lots of autoimmune diseases and issues (including Hashimoto’s), Adissons Disease, and more.. Currently on SubQ Hizentra once a week. Switched over from monthly IVIG Privigen about 7 or 8 years ago and watched my numbers soar upwards and maintain ever since. It’s still not perfect for sure, but, an improvement nonetheless.

So, I do look forward to hearing from you if you have time.. meantime, stay safe and well.

[ndstephens49 in reply to Fezzywig]

Hi Fezzywig!

Just a quick ‘Hello’ as I have a 9:30 am Doctors’s apt.

I was born in 1949 so we are almost twins!

I have severe fatigue problems. I thought it was due to severe heart failure but that has improved due to new synchronized pacemaker. However, even now I can only walk 4-6 blocks on a good day and no blocks on a bad day when I am camped horizontally on the sofa.

I am in West Virginia but my husband’s bro is near San Antonio. Have been to Texas once. My son also goes to McKinney Texas (near Dallas) to work some with his law partner.

We need to PM , if possible.

Gotta go,

Nancy

[Fezzywig in reply to ndstephens49]

Agree about the PM thing, but will need your guidance. I am the neophyte when it comes to even the most basic fundamentals. If you can get me started in the right direction, I can think of several questions for you that might help me figure some things out that have been plaguing me for some time now..

Susan