Trying to stay upbeat.

@ryman I am sorry that you did not get the kind of answers you were looking for at your appointment. That is discouraging, I know. When you feel up to it, please share with us some of the tests that you will be having as well as any diagnostic possibilities that the doctor may have suggested. I can understand your wanting to have some productive things to do at home. Please explore some of your personal interests and that which you enjoy doing. For example, are arts and crafts of interest to you? Are you a "people person." As you explore your strengths some ideas may come to you once you finish with your medical tests and you can move on. In the meantime, do your best to relax and give yourself a "rest break" from your worries for a few minutes each hour.
We wish you well! Teresa

@ryman, I'm really sorry you didn't hear what you were hoping to. I agree with @hopeful33250, activities to keep your mind busy or occupied is the best. do you have support people you are able to talk to, vent with, cry with? If I may ask, what is your age? Not that that matters, but suggesting activities is easier sometimes helpful when knowing that. When you are ready, please share some of the things your doctor spoke about. I's always good to ask questions, talk about some of your fears of the unknown, of the tests, and how we can possibly be the best support for you! Blessings!

Thank you, Hopeful and Alyric, for your replies. I am 75. I like to work puzzles, crochet and knit. Sadly, what I enjoy most is gardening. The needlework can keep me busy but it isn't really useful. The doctor seems to think that Lyme disease and sarcoidosis may have done some things to my brain. Also, I had one TIA. She said my MRI indicated I had others I was not aware of. That is scary. She wants me to have a lumbar puncture which, frankly, terrifies me. The procedure would be bad enough but I read that you have to lay flat for 2 to 8 hours. Because of several medical problems it is very uncomfortable for me to lie flat for even a few minutes. As for people to talk to, I have 3 sisters I can talk to about anything. But we all live in different states and we are all hard of hearing so phone conversations can be difficult. My daughter and grandson give me a lot of physical support - driving me, helping with tasks, going to the dr with me - but they do not like for me to get upset and discouraged. Maybe someone here has had a lumbar puncture and can tell me what it is really like. Right now, dreading that, and thinking that I may never be able to drive or do the things I want has me pretty depressed and discouraged. And I won't see the neurologist again for a month.

@ryman Thanks for telling us a little more about your situation! When it comes to finding productive things to do with knitting, I can think of many charitable organizations who would love to have these items for babies, hospital patients, etc. If you contact your local women's shelter, church, etc. I'm sure you would find very grateful recipients for some hand made knitted or crocheted items. Also, regarding your love to garden, have you considered some window type garden boxes or herb gardens that can be in your window?
With regard to the lumbar puncture, I had one of those a number of years ago. The actual procedure is a bit uncomfortable, but just for a few minutes. The need to lay quietly however, is probably the toughest part. I was told to drink a lot in order to hydrate afterwards (which makes it difficult to lay flat on your back). I had a "spinal headache" for about 2 days afterwards, not the most comfortable experience, but it does go away with bed rest and lots of fluids. Keep asking questions and sharing your concerns, just expressing these ideas can be very helpful! Teresa

@ryman . I found this information from the National Institute of Health. It is their fact sheet, but always follow the orders of your doctor and/or those administering the test/procedure. I hope this helps! I have had these done; I am a little younger than you, but with chronic pain, I didn't find the procedure difficult and the recovery to bad. It is hard to lie flat, but I was able to have a pillow under my legs and head. The reason you need to lie still and flat is to allow the puncture site to seal so no fluid leaks out of your spinal canal. If you have had an angiogram, it is very similar to that. Please ask more questions!

LUMBAR PUNCTURE FACT SHEET
For:____________________________________

What is it?
A Lumbar Puncture (Spinal Tap) Test is a procedure to remove a small sample of cerebral spinal fluid from
the lower spine. A needle is inserted between the vertebrae (backbones) in the lower back and into the
space containing the spinal fluid which surrounds and cushions the brain and spinal cord.
Where and when is it performed?
How long does it take?
About 20 to 30 minutes. There is an additional recovery period of about 30 minutes after the test, when you
will remain at the clinic.
Why is the Lumbar Puncture test performed?
To obtain a specimen of fluid for testing. Cerebrospinal fluid (CSF) bathes the brain and contains proteins that
can provide clues about disorders such as Alzheimer's disease or changes in the brain that accompany aging.

Does it hurt?
You may experience pressure when the needle is inserted. You may also feel
some very brief leg pain while the needle is positioned because it may briefly
touch a floating nerve ending.

How is it performed?
You will lie on your side with your knees drawn up toward your chin as
far as possible OR you will sit on the edge of an exam table, in a hunched
forward position.
The doctor will cleanse the skin over your spinal column with iodine
An injection of local anesthetic may be given at the puncture site
A needle is inserted into your spinal fluid space
Spinal fluid is collected into specimen tubes for
laboratory testing
The needle is withdrawn, your back is cleaned, and
a band-aid is placed over the spot

Frequently Asked Questions
Q: What if I’m unable to flex my back and legs?
A: The test can be done without bending, or
while sitting
Q: Is the entire needle put into my back?
A: No, but the needle must be long enough to
pass through the muscles of the lower back
Q: Can I be paralyzed if the needle hits the
spinal cord?
A: No, there is no need to worry about spinal
cord damage. The needle is inserted well
below the spinal cord

AFTER-THE-TEST INSTRUCTIONS

After the test
You will be asked to lie down for about 30 minutes.
You will be given something to eat and drink.
While you are recovering, please report any of the following symptoms to the doctor or nurse:
- Headache
- Tingling
- Numbness or pain in your lower back and legs
- Problems with urination
You will return home after the recovery period.

Instructions to follow at home
Drink at least 6 glasses of fluid (no alcohol) in the next 12 hours.
Remain quiet for the next 24 hours.
Avoid any strenuous physical activity for 48 hours - no exercising, heavy lifting, or repeated bending.
A mild headache may follow a lumbar puncture. It is often relieved by caffeine, aspirin or tylenol, and
drinking plenty of fluids.
If you develop a headache that persists more than 24 hours, in particular one that is worse on sitting
or standing, and better when lying down, then call the doctor or Study Coordinator at the clinic.

@alyric That was very informative. thanks! Teresa

Thank you for the information. Mine will be done at a very small hospital. The biggest concern is lying down so long because of acid reflux, back pain and trouble swallowing. I can not drink a lot in a short time and definitely not lying down. I couldn't even finish my last MRI.

You can ask for an IV medication for the re-flux to help that; you can also ask for an anti-anxiety & pain med to help you for lying comfortably!

Thank you. That might help.

I first had neuropathy, when I retired 2006-2008; first went to University Medical Center; not impressive.  I sensed the pathway.  Then I used turmeric along with developing a spiritual support group in the Philippines(on line, and one trip there)....I was ready to visit Mayo...Boom it all passed.  Then recently, over a 1year and half; dizziness symptoms.  As previously, study food medicine(much in research, but little in those who sell the products)...experimented and use ginger.  Dramamine(sells: ginger, a substance similar to meclizine(good only for a few weeks), and a anti histamine(I am not sure on subgroup)....Be sure to sort out the Dramamines.  Otherwise use quersitin (found in apples and onions)... and of course as I initially did(rule out tumor or bled)...plus noting who the radiologist/or have second interpretation by a neurologist(which I did).  Some folks have multiple MRI imaging(in some cases find a small, hidden tumor).  Hopefully, the food medicine and no obvious tumor or bled, and find a trusted and knowledgable advocate and self research. JIM>>>>