posted
Just had a brain spect done yesterday. The doctor's office just called and said "everything looked normal."
Yes, I'm thrilled that it looks "normal," but I guess I'm disappointed that we just hit another dead end on what might be causing some of my symptoms.
Another frickin' waste of time and $$$$$$$$$$$$$! I'm so SICK of this crap!
How can you explain your hands waking you up sometimes 3 times a night COMPLETELY NUMB, but hurting also? It happens in the day time, too.
The Raynaud's is so out of control that I've had 2 fingers go from WHITE to BLACK. It looked like I had been finger-printed or something. I scared me to death!
My feet feel numb most of the time, I guess I've gotten used to walking without feeling like I have feet. My toes are almost always white to some degree.
All of this has gotten worse and worse in the past few months...........I've been trying to find out what's causing it. I was so prepared for the brain spect to say something about some decreased blood flow SOMEWHERE that would be causing some of this, but noooooooooooooooooo.
Anyone have any ideas?????
I'm thinking now that it's got to be connected to my neck, where C5-6 is messed up. There is some cord compression there.
Still trying to find a "good" neuro, if there IS such a thing. One neuro doesn't want my case (long story), but she did sent me do a neuro-surgeon who was on the fence about surgery.
He told me it's not going away, and that 1/3 of him feels I shouldn't do surgery, but 2/3 of him feels I should. He understands all of the other health issues and that makes it all the more complicated for him to give me a definitive "yes."
I'm seeing another "new" neuro Feb.19th. Anyway, I'm rambling now.
Any suggestions or advice on what YOU would do?
Thanks, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
Was the SPECT scan done at Columbia or somewhere else? I think it makes a tremendous difference on where it is done and how they interpret the report.
It sounds like the bloodflow issue is more in the extremities -- headaches would be a primary symptom if bloodflow is restricted in the brain. Numbness and tingling also sounds more like peripheral nerves than central nervous system.
Which infections have you been diagnosed with or treated for?
How is your blood pressure? Are you currently on any meds for that?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks, Bea for replying! I'm really short on time right this minute, so it's hard to get into all of the dx's, etc.
Briefly: Yes, I DO have headaches, especially weird ones in the left temple area. Mainly the headaches are just about every different kind you can have........
Dx'd w/Lyme (and probably Bart, and who knows what else) in Aug. '07. Tx for at least a year. It was doxy for most of the year, along with diflucan.
Then we changed it to Tindamax/Zithro/Diflucan combo for about 2-3 months. My doc said it was time to do some cyst-bustin'.
That combo of meds made me SO sick, and I was only pulsing 250mg of the tindamax 3x weekly. I was taking only 250mg of zithro everyday. She just didn't think I could handle more than that dosage ------- she was right!
I was having "colon attacks" 24 hours after taking the tindamax. I lost so much weight that I got down to 93lbs. I'm 5'2". My family and friends were actually telling me how horrible I looked and thought I was anorexic. (Thanks, guys!)
I quit taking all of that on Labor Day weekend and haven't taken any abx since. Now it's Jan. and I've only been able to put on 4-5lbs.
Anyway, this is getting too long and I've got to go..........as far as dx's: Fibro, CFIDS, myelodysplasia, hemolytic/macrocytic anemia, spine compression at C5-6 due to herniated disc, diabetes type 2, heart issues (MVP, tachycardia, atrial flutter or atrial fib, etc.), neurogenic bladder, hollow visceral neuropathy (a brain to gut neurotransmittor issue), systemic autonomic nerve dysfunction, Raynaud's syndrome, blood pressure - high & low, cognitive impairments (from "blips" to deja vu to memory loss, word retrieval, possible "seizure like" episodes, etc.), visual, auditory & smell "hallucinations" (for lack of a better word), viruses - HHV-6, CMV, EBV, HPV, CPn, Myco........, depression, generalized anxiety disorder, ADD, PTSD, carpal tunnel (both hands), DDD, thyroid issues ------
This is WAY too much info!!!!!!!! So, yes there are lots of ingredients in this stinky pot of stew! It's hard to figure out what's causing what!
I've been having health issues since late '95, after the VERY traumatic birth of my 3rd son. Listing all of those dx's probably makes me sound like a hypochondriac, and I know some of them overlap with so many illnesses.
I just can't take this Raynaud's in my hands & I guess in my feet as well anymore. There always seems to be a few sx that give you more trouble, then the next rowdy bunch comes into town!
Any insight would be appreciated. (I take Neurontin, Toprol, Wellbutrin, Xyzal, Klonopin, Fioricet, Adderall, Armour, Levoxyl ---- that's all I can think of right now.)
GOT TO GO! Going to be late for a Lyme Support Group meeting!
Any help is totally welcome!
Thanks, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
The only insight I can give is Toprol causes lack of blood to your hands and feet. It is one of the listed side effects and tells you to keep them warm. Talk to your heart doctor about this.
Posts: 49 | From philadelphia | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry you are having such a hard time.
I'm no expert in Raynaud's but I know a lot of FMS patients have it. FMS is noted in various literature to be the result of lyme. In my opinion, it could also be the result of other infections. I've noted a lot of people with FMS have the bart lumps that I've read about.
I'm not sure of the details but I *think* Parvo may have some relationship with anemia.
I would get on some treatment for the infections that you do have such as your viruses, lyme and bart. Hopefully that will help with your symptoms.
Hope you get it figured out.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
terri, I went through some horrific night pains in hands and wrists. I would wake up yelling and crying from this off and on.
I still have this on occasion but nothing like the episodes in '05/06. I did discover that I slept with both my hands limp and folder over. In other words, the circulation was poor in my hands due to my sleep habits.
I bought a couple hand/wrists gloves from Walgreens and wore them to sleep for a couple months. These helped enough to keep more blood and oxygen to hands.
I finally retrained myself to sleep with my hands/wrists extended, without bending and it helps.
My hands/finger/wrists episodes seem to happen more in the winter than warmer months. On advice from somebody from this site, I discovered Pycnogenol supplement helps ALOT with restless legs, arms, hands etc. I have restless body, not just RL.
1 mg per pound of body weight if Pycnogenol daily. I take it 4-6 weeks, discountinue it and just wait until they start again.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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bettyg
Unregistered
posted
terri, WOW, big time ... so sorry to read all you have been and are going thru!
may i suggest you change topic headings to get MORE READERS ON SPECIFIC things you want answers on?
posted
Discoloration could be due to vascular issues. May want to check fibrinigen levels and anticardiolipin antibodies.
Posts: 70 | From U.S.A. | Registered: Dec 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Terri3
Nitro-bid for feet Reynauds. Turns purple toes nice color. Podiatrist rx'ed. Was getting foot ulcers from Reynauds and this stopped them in their tracks.
Feelfit
PS Nitro-Bid is a cream that you rub on
Posts: 3975 | From usa | Registered: Aug 2007
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