Re: NS dx story

[Guest guest]

2001 I was DX with lung biopsy. Lungs were very affected fought for

three years to bring my lungs back. They are still scarred and I

struggle to breathe when I am active. My lymph nodes were HUGE but

they would not biopsy them...they told me that it was obvious it was

in my lymph nodes. Within 3 months had facial numbness, ringing in

ears, loss of hearing (has returned--but comes and goes), loss of

muscle (I can not longer lift weights--I use to lift weights 3-4

times a week). Feet feel like they are burning, FATIGUE so bad that

my husband will have to shake me to wake me up. I am unable to make

a tight fist and when I wake up it feels like my muscles

are "connecting" and I break a little sweat. I forget what I am

saying and I repeat every thing. In fact that is a joke with my

kids. They just laugh at me........ha ha ha ha

Here's the good news; since you have biopsy proven pulmonary sarcoidosis--then there is no need to biopsy the lymphs, etc. Once you start showing symptoms of it being as systemic as you are describing-- you get "classified" as "chronic progressive multi-system sarcoidosis." However, the ICD9 manual only has "sarcoidosis" and no addl subclasses--so even when it is multi-system, neurosarcoidosis--it's still "just" sarcoidosis.

Now for that MD that thinks nothing more can be done--so off you go out of his life--find another neurologist, rheumatologist, and pulmonologist. You need a competent Ophthalmologist also.

There are additional treatments available that can and do help slow the progression--treatments other than prednisone.

Methotrexate, Plaquenil, Imuran, Arava, Enbrel, Humira, Remicade, Cytoxan, Thalidomide are all choices. Sometimes it takes a combination of several of these to gain control--but it does happen.

Your MD needs to introduce one medication at a time--so that if you have any reaction--he knows what it is that your reacting to.

As far as your lungs--if you are having problems with your Diffision Capacity-and since you have lung scarring from the sarc, you are having problems with the diffusion--then supplemental oxygen would probably help greatly when you are exerting yourself. Have them run an Exercise Tolerance Test and PFT along with DLCO levels, and that will tell them if you need oxygen. If your Saturation levels drop below 94% when exercising--(or grocery shopping) then you need portable O2.

If you have severe headaches, a sleep apnea test is a good idea, as your breathing lowers even more at rest. If you're not getting enough oxygen across the lung tissue, then you will have peripheral numbness, tingling and burning in your hands and feet.

Concentration and memory are effected by low diffusion rates. It's also effected if we are "hyperventilating" because we aren't clearing our lungs of the "old" air and so what is being picked up is carbon dioxide(or monoxide-I can't remember which) but it isn't "good" air--so we end up with the same side effects--our red blood cells aren't getting oxygen to our extremities and brain.

The burning and tingling is also from the systemic inflammation of our blood and blood vessels. This is a huge part of the NS-- it can be in the form of "vasculitis." When it happens in the brain itself, we get the brain fog, and the area that is compromised by decreased bloodflow, can be permanently damaged--or it can be intermittent--(Transient)--so it's hard to pin down-and many times won't show up on MRI's or CT's.

This is where Neuropsych testing plays a huge roll-- the tests require specific areas of the brain to function to complete each different test. Where you have deficits and can't complete the task correlates with that area of the brain, and tells them where you have problems. (Left Frontal lobe is the area of reasoning, problem solving, multi-tasking, personality, sexuality, all those "executive functions" that we have to have to work.)

I've done quite a few posts on these issues--they're in the ARCHIVES AND LINKS.

The addresses are at the bottom of this and every email--so please check it out. Print out ones that you find helpful--and give them to the MD's. You will have to be their educators on this one-- and the pay is lousy. Hopefully, they'll take heed, and get you on regime to better health.

Blessings,

Tracie

NS Co-owner/moderator