Struggling to get help!

[nubianprof63]

I am 56 male with APS and have been struggling with it all my adult life, I am fighting for my life.

[HollyHeski Administrator]

Hi, welcome, as this is your first post, we all struggle from time to time.

Where are you and do you have an Hughes/APS specialist? Are you being cared for?

To help signpost you in the right direction, can you give us more info on your backgrounf and current issue?

[nubianprof63 in reply to HollyHeski]

I am 56 and have been diagnosed for approximately 18 years. During which I have been struggling to get help with the wide spread spasms, migraines, brain fog and cardiac events coupled with stroke range hypertension. I have had two semi-documented PE's, multiple TIA's according to one retired doctor who pushed and pushed until she found me a Hematologist who dug a little and diagnosed me. Since them, I have had to exit from work-force three times in the last 15 years until my health stabilized. I looks like, I am at that door again. Not sure what sucks more the pain, lack of sleep, and fear that I will not get to my nitroglycerin fast enough to stave off whatever cardiac events that keeps stalking me or the depletion of my savings again. This sucks!!!!!! I need a knowledgeable doctor in the Kansas City area. I forgot to add that it feels as if every cell in my body is generating pain not to mention but back pain.

[Kalykrill in reply to nubianprof63]

I know exactly how you feel as I am experiencing the same thing. The pain itself is so debilitating and takes a toll on your mind body and soul. I always say I am trapped in a torture chamber that is my body. I also am having a hard time with my drs as they have little to no experience with APS. If you Google drs in your area with APS experience you should hopefully be able to find one

I have found 2 in my area from google searches, but I am dealing with the VA who doesnt like to refer people outside of the VA hospital. I will do some digging to see if maybe I can find a dr for you. You have to word things right on the search or they do not pop up. For right now, I would get an appointment with your GP and raise some hell. Make them understand.

[KellyInTexas Administrator]

Hello Nubian Prof.

Great to have you with us.

I’m going to give you a ,”starter website.”

( I know you are certainly not new to APS, it’s good to have.)

ghic.world/

Does you Hematologist accept ,” semi documented DVT status?

Did TIA’s leave white matter lesions on your brain? ( it’s fine if it did not- I’d like to understand how your doctors reason out your plans/ medications, etc. your nitro prescription tells a strong story.

Do you have leaking heart valves? Non infectious endocarditis ( Liebmann Sachs) can result from APS in absence of other reasons.

As you know- can cause pulmonary hypertension.

Are you on warfarin? What INR range? How often do you get a vein draw? Do you have LMWH at Joe to bridge with at home if you are low?

So you have auto immune spinal issues? Spond.A. ?

Have you considered asking your physician about the possibility of disability of some sort.?

The migraines are debilitating. They are actually debilitating- I am totally aware. I’m currently receiving steroids . It is helping- but not a long term solution. ( I’m on Rituximab but clotted through that also, and now about to start IVIG- so also trying to calm down veins. Vasculitis like rashes, hallucinations, and small seizures... with INR set at 5.0-5.5 - not normal. So steroids are helping immensely with migraines.)

If you don’t have an APS Specialist, you may not get the help you need.

PM me if you want recommendations

[nubianprof63 in reply to KellyInTexas]

Thanks Kelly, I am in Kansas City and no I do not have an APS Specialist. I will take a more thorough look at your reply tomorrow. Thanks again.

[Kalykrill]

Call this guy. His name is Dr Frank Slovick. Says he specializes in APS.

Overland Park Regional Medical Center

10500 Quivira Road

Overland Park, KS 66215

Telephone: [phone]

[nubianprof63 in reply to Kalykrill]

Thanks for the recommendation, I tried to made an appointment with him but I had already saw another doctor that was a part of his medical group therefore they would not schedule me. I am not finding anyone that has any current knowledge of the disease, sorry for the woe is me. I am just a bit frustrated but I just made another appointment with another Rheum.

[nubianprof63]

Thank you again, I will call later this morning. I am glad that I finally decided to get active here. All of the responses have been great and greatly appreciated.

[nubianprof63]

Kelly see my reponse to your questions below.

Doctor's accept previous PE, the first PE was well documented. Due to the fact that I expain repeated cardiac events that respond to nitro, I have never really had a problem getting it. Around the time, I was first diagnosed I had problems with uncontrolled pulmonary hypertension and would end up in the emergency room alot due to the elevated BP, chest pain, arm tightness and facial numbness nitro always resolved the problems and no other cause would ever be identified

By the way, I recently found this in my record, can you tell me what the findings mean?

************************************************************************************************

You were seen today for chest pain with radiation to the left arm. EKG demonstrated ST elevation in V4, V5, V6 and II.

Ambulance called for transport to ER.

4‐81 mg chewable aspirin and one nitroglycerin given.

Electronically signed by ********, APRN at 08/21/2017 4:21 PM CDT.

************************************************************************************************

I have not had any brain scans so not aware of any lesions.

I was told in Florida that a valve was not closing properly, I have a murmur and most EKG/ECG show Early Repolarization but I cannot not get a cardio to dig deeper, so most often now I just take nitro and pray.

I am on warfarin 7.5mg 6x a wk and 10mg 1x a wk, month checks a clinic but I also have home INR test unit. I got tired of fighting with the doctors about not telling me my number and ending up in the hospital urinating cherry red urine. I then went a hunt for a doctor check wrote me a prescription for the unit. I now need my INR between 3 & 4, at 2.5 or below, I cannot stay awake and my back feels like it has shreds of glass in it. No one believes me but it is true.

I don't know the cause of my spine deterioration but years ago, I went from one bulging disk to five and multple fissure tears in 6 months time. 2 years later I had spinal fusion and my first PE during that surgery.

I just started the process of filing for my third FMLA, this time I am going to restart SSD or whatever it is called. I hate to do it but I feel I have no choice anymore. My back is worse than ever, migraines are relentless not to mention

For the 5 years, I save all my PTO days for health recovery, we do not vacation as I need to make sure I have time to recover. In 2017 and 2018 had back surgries this year migraines have taken center stage although the back issues are 24/7. I don't want to do steriods as I watch two sisters diagnosed with Lupus deteriorate and die on them.

My job has been great but now I feel as though I am not pulling my weight, most days I cannot recall names of persons, articulate processes nor quiet my grunts and groans. I have always pulled up my bootstraps as it were and got down to business these days, I waste my time trying to figure out what i need to be doing than actually doing anything. I cannot keep making excuses, I am tried of starting over again but I have no choice.

[KellyInTexas Administrator in reply to nubianprof63]

We of course always reiterate- we are not doctors.

Therefore our suggestions of things to consider are from academic papers and personal experience and experience of others, and admin here on forum, who usually are under the care of APS consultants.

If you do a quick study on liebman sacks non infection endocarditis, you will see it’s association with APS . Do you have the vegetation on the valves?

Have your doctors spoken with you about the addition of an anti platelet/ anti aggregate in conjunction with your warfarin? ( it must be a tiny amount only, if at all. Only a neurologist should advise your Hematologist.) They should both be APS proficient. I’m very well aware that specialists are very hard to come by.

Have you had an MRI of your brain? When? It should be done yearly with contrast.

I’m not sure about your spine.

How are your kidneys? ( glass feeling in back?)

Do you have a Rheumatoligist?

I can recommend a pulled together team for you in San Antonio. Can your Kansas City doctors organize this for you on an urgent basis as consultants to them?

This is my team:

Rheumatoligist: Dr Jose Roldan

Hematologist: Sri Beeram

Cardiologist: Gregory Freeman ( excellent!)

Neurologist Anand Mehendale ( Kerrville, Texas Highly recommend - 6 month wait. )

[Lure2 in reply to nubianprof63]

I read what you wrote above and I would like to know;

It is very good that you veintest every month at the hospital and I wonder if you have chequed if the vein- and the fingerprick-values are the same? I also take monthly tests at the hospital and selftest every 3rd day, but with the CoaguChek XS my fingerprickvalue was higher than the vein-test value. It may be ok if it keeps the same difference. For me it was around 0,6 higher in the finger.

It is ofcourse important to know if the blood-values differ because otherwise it is not so reliable to selftest if you do not know the correct blood-INR. It is always the vein-value that counts!

[Tofino5]

I’m so sorry for what you are going through. Maybe going on SSDI would help you, because not working may relieve a lot of stress, then you could focus on your health instead of work. You are getting good advice in the earlier responses.

Good luck.