Re: New to Neurosarcoidocis

[Guest guest]

I got paresthesia (numbness / tingling) down my right arm and around my mouth

when I had my last neurosarcoid 'attack' in September last year. Some nerve meds

(Lyrica, Neurontin) can help a bit sometimes, but they take a fair bit of

getting used to, and can have a lot of side effects. They didn't work well for

me, anyway. These symptoms are slowly dissipating, my neurologist thinks the

nerves will eventually heal, but it's very slow. It's definitely not as

noticeable now as it was 6 months ago. It's more an occasionally annoying thing

than anything painful. Nerves can repair, but it's at a rate of millimetres a

month (ie very very slowly).

I do notice that my legs tend to 'go to sleep' much more easily nowadays if I

sit with them tucked up, but don't know if that's a NS symptom or not.

Best wishes to you and your husband, it's good he's finally got a diagnosis,

that really does help matters.

xo

> After suffering for some time with so many different symptoms my husband

finally got diagnosed with neurosarcoidocis last year. With the many different

symptoms he is having the worst one for him is the tingling like pins and

needles from the waist down to his toes .None of his medication is helping at

this time and i was just wondering (hoping actually) if anyone has had any

improvement with this symptom. Any suggestions or advice would be greatly

appreciated.

> thank you

>

>

>

[Guest guest]

Jackie, I like your new " personal record. " We can break that every day, can't

we?

Re: New to Neurosarcoidocis

Hi

I am Jackie. I was given the sarc monster in 2005. I went from not being able

to move at all to walking and driving well everything. I have constant

tingling from my knees down. It used to be from the waist down. It does, it

seems, gets better however when I am really tired and run down it comes back. I

use a walker to walk because, other than being at the end of my legs, I don't

know where my feet are.

It is a real pain, I hate it but at least I can feel things now. I know I am

alive. I am on prednisone, Metho and plaqunill. I don't know how long I will

be on it but I hope it is what is helping my tingling going from waist to knee.

I wish you and your husband all the luck in the world and my prayers are with

you.

Hang in there we can deal with this monster.

Best to you

Jackie

Today I broke my personal record;;;; I AM STILL ALIVE!!!!!!!!

[Neurosarcoi

[Guest guest]

I take gabapentin PRN. It really does work good for the burning feeling.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: New to NeurosarcoidocisHi , Welcome, I'm sorry you had to find us, but there is a lot of information from many wonderful, caring, people here that have been through many things. I use to have the tingling and pins and needles feeling, esp my left side, now I just have a numb feeling, every once in awhile if I forget I'm sitting on my left leg, it will tingle, with needles for a few minutes, then it goes back to being numb. I am numb from the top of my head, left side all the way down to my toes, it's a strange feeling, but better then the tingling, pins and needles feeling, can't say I remember if one med took it away, or it just progressed to that point, I think it was not helped at the time with any meds. I've taken several different meds for the nerve pain, which is not the needles and pins, it's more intense burning like pain, and that was helped first with neurontin, then Lyrica, and now on Cymbalta, not on all, just the Cymbalta right now. feel m ore numbness with it, but less pain, I'll take numbness over pain any day. Hope this was helpful, but probably not, hope someone else has better info for you. feel free to ask any questions. Were here to help. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you

[Guest guest]

Hello Everyone,Thank you so very much for your kind messages and words of support. The information you have given me has been a great help and I have passed this onto my husband. He is currently taking Gabapentin and the dosage went up to 6 tablets a day. He's also taking Imuran and Prednisone. Unfortunately as he's not very active he got blood clots and is now on Warfarin. He has an appointment next week with his neurologist so I will now be able to tell him of some of the other medications that you have been prescribed. We live in Melbourne Australia so I'm not sure if the medicine is the same just with a different name.When my Hubby was diagnosed we were telling his Mum and she told us that she was diagnosed with sarcoid around 18 years ago as tests found a small lump in her lungs. She was told of

all the symptoms she could have and fortunately for her she had none and is fine now to this day. I was wondering does anyone else have any family members that have been diagnosed with sarcoid?Thank you again and I am so happy to have found this wonderful support group

[Guest guest]

: Glad to hear this is being resolved; at my last app't with my neurologist she upped me to 1500 mg (5 x 300 mg) or (1800 if needed) of Gabapentin daily, but she changed how/when I take medication: rather than spacing out during day I now take 3 capsules at night (4 if it's been a bad day) and have found that not only do I sleep better, I only need the other two spaced out during the day to manage the pins & needles and pain.

On prednisone, clots are a risk; it was almost a year ago that I had to leave work when I was hosptialized for the second time in only a few weeks -- admitting diagnosis was PE; I've had one bout of DVT since then, even while on Coumadin (warfarin): go figure!

All the best,

in Canada

To: Neurosarcoidosis From: melp4@...Date: Wed, 27 Apr 2011 00:09:08 -0700Subject: Re: New to Neurosarcoidocis

Hello Everyone,

Thank you so very much for your kind messages and words of support. The information you have given me has been a great help and I have passed this onto my husband. He is currently taking Gabapentin and the dosage went up to 6 tablets a day. He's also taking Imuran and Prednisone. Unfortunately as he's not very active he got blood clots and is now on Warfarin. He has an appointment next week with his neurologist so I will now be able to tell him of some of the other medications that you have been prescribed. We live in Melbourne Australia so I'm not sure if the medicine is the same just with a different name.

When my Hubby was diagnosed we were telling his Mum and she told us that she was diagnosed with sarcoid around 18 years ago as tests found a small lump in her lungs. She was told of all the symptoms she could have and fortunately for her she had none and is fine now to this day. I was wondering does anyone else have any family members that have been diagnosed with sarcoid?

Thank you again and I am so happy to have found this wonderful support group

[Guest guest]

, Early on in my dx I, too, had "pins and needles" on my face, arms, and legs. It resolved over a few years and now just comes back from time to time. I think klonopin is what they gave me for it.To: Neurosarcoidosis Sent: Tue, April 26, 2011 3:41:51 AMSubject: New to Neurosarcoidocis

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.

thank you

[Guest guest]

Hi ,

Can't remember if I wrote back to you or not, par for the course;)  I had an Aunt who suffered terrible with her lungs, with Sarcoid, she died last year, but was 82.  My Mom was ? dx but never had any problems at all. Thank God.  She has 2 cousins in Norway who have it, both Neuro. and I have a cousin, daughter of the same Aunt who was dx with it, but said no problems. 

I have two boys and I pray they don't get it, but it's one of those things, we have no power over. Gabapentin, turned me into a zombie, I took it for a few years, as it helped the pain, then they came out with Lyrica, and that was a good switch, and now off Lyrica and on Cymbalta, an even better fit. so there are many options.  Never had any blood problems. (knock on wood).

I hope your husband starts feeling better soon. Marla

To: Neurosarcoidosis From: melp4@...Date: Wed, 27 Apr 2011 00:09:08 -0700

Subject: Re: New to Neurosarcoidocis

Hello Everyone,

Thank you so very much for your kind messages and words of support. The information you have given me has been a great help and I have passed this onto my husband. He is currently taking Gabapentin and the dosage went up to 6 tablets a day. He's also taking Imuran and Prednisone. Unfortunately as he's not very active he got blood clots and is now on Warfarin. He has an appointment next week with his neurologist so I will now be able to tell him of some of the other medications that you have been prescribed. We live in Melbourne Australia so I'm not sure if the medicine is the same just with a different name.

When my Hubby was diagnosed we were telling his Mum and she told us that she was diagnosed with sarcoid around 18 years ago as tests found a small lump in her lungs. She was told of all the symptoms she could have and fortunately for her she had none and is fine now to this day. I was wondering does anyone else have any family members that have been diagnosed with sarcoid?

Thank you again and I am so happy to have found this wonderful support group

[Guest guest]

I'm sorry to be answering so many days late, I have not been on my email in a while. Welcome to you and your husband, although I am terribly sorry you even have to know we exist. About your question my nerve damage is being helped by IVIG therapy because my nerves in different parts of my body are demylenating. The IVIG does help, and I use Lyrica to help control the stabs, pins and needles. Believe it or not, along with the Lyrica I use Maximum strength Aspercreme to take the rest of the edge off. I had a nerve biopsy, so I know what the damage is. Ask your doctor about the IVIG Therapy, it is an IV infusion (mine is once a month). It takes about 3 hrs. Also, has he had any testing of the lumbar/sacral spine, mri, ct, etc. There are

also several spinal issues that can cause the something called radiculopathy from the waist down (tingling, stinging, numbness). It would have to be a bilateral issue to cause the extent your husband is dealing with. If it is a spinal issue, there are times when they can make corrections that will relieve the nerve impingement. If it is nerve damage, at least maybe they can stop or limit the progression, and make him more comfortable.

To: Neurosarcoidosis Sent: Tue, April 26, 2011 3:41:51 AMSubject: New to Neurosarcoidocis

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you

[Guest guest]

Be careful to keep up with your dental care if you use Neurontin (gabapentin), it can cause issues sometimes

To: neurosarcoidosis Sent: Tue, April 26, 2011 5:01:22 PMSubject: RE: New to Neurosarcoidocis

Good day: I, too, am relatively new to Neurosarc (diagnosis confirmed by brain biopsy on April 23 last year), with a fairly swift onset of multiple symptoms despite large doses of prednisone. I have been treated with Cyclopohsamide (cytoxan/chemo); aziathoprine (?) in hopes of being able to reduce the steroid and its side-effects but without success. I am currently on CellCept (it appears to be helpful, given reduced areas of inflammation in brain on most recent MRI) and am waiting to begin complementary treatment with Imuran (remicaide) -- hopefully in next couple of weeks!! (Just learned today Merck/Schering, the manufacturer has approved my case under compassionate access program; I live in the Niagara area of Ontario, Canada and this particular "off-book" use is not approved by Health Canada so no private or public drug benefit program will give approval for or cover cost

of these treatments . . .However, to 's issue/question, and the reason I am weighing in today: I, too, have incredible tingling/peripheral neuropathy, as well as trigemenal nerve involvement. I have found success with Gabapentin; this reduces the tingling and pain, but I have not experienced the side effects I did with Lyrica (tried two nights and had horrible dreams) . .. The Gabapentin also helps with the burning. I know it makes a difference because I have missed doses on occasion; despite relatively severe symptoms I am still taking a relatively low dose; do have some room to "grow" if necessary. I am also on hydromorphone (time release) for pain but the neuropathy is a separate issue, as most of you probably understand . .. Hope this helps, and all the best to everyone in this group.--the Canuck!

To: Neurosarcoidosis From: mebramer@...Date: Tue, 26 Apr 2011 11:21:30 -0600Subject: Re: New to NeurosarcoidocisHi , Welcome, I'm sorry you had to find us, but there is a lot of information from many wonderful, caring, people here that have been through many things. I use to have the tingling and pins and needles feeling, esp my left side, now I just have a numb feeling, every once in awhile if I forget I'm sitting on my left leg, it will tingle, with needles for a few minutes, then it goes back to being numb. I am numb from the top of my head, left side all the way down to my toes, it's a strange feeling, but better then the tingling, pins and needles feeling, can't say I remember if one med took it away, or it just progressed to that point, I think it was not helped at the time with any meds. I've taken several different meds for the nerve pain,

which is not the needles and pins, it's more intense burning like pain, and that was helped first with neurontin, then Lyrica, and now on Cymbalta, not on all, just the Cymbalta right now. feel more numbness with it, but less pain, I'll take numbness over pain any day. Hope this was helpful, but probably not, hope someone else has better info for you. feel free to ask any questions. Were here to help. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you