Feeling better every day

[sandybeach458]

I am very glad for this forum. I have been on Lipitor for 4 yrs. I have recently found out the side affects. How scary. I think I can now attribute my problems to this statin drug. Since Oct 2, 2006 I have been paralyzed on my right side from my rib cage down, in Nov. my left leg started burning severely, from tips of toes to low back. I have pain in my thorasic area, feels like s softball is stuck in there. I have had test after test and all are coming back negative except for the MRI of my T7-T8 area, it shows inflammation of the spinal cord. The doctors are stumped, they have no idea. I am going to Colorado to see a Neurologist there that deals with some of these problems so hopefully we will get some answers. Iam nervous, but its time to know what is happening. I have been off Lipitor for 5 weeks now. I know they say you should gradually work yourself of them but I quit cold turkey. I had no problem. My pain is no where near where it was, my neck has stopped spasming and my shoulder doesn't hurt anymore. Hopefully in time the rest of the pain will go away too.
Sandi
Michigan

[poohhel]

Hi Sandi and Welcome! I am having the same burning in my arms, hands, legs, and feet as well as a numbness or not waking up feeling extending from my neck and shoulders down to my butt, legs and feet.

My neurologist's first prognosis is perpherial neuropathy as a symptom of ... meaning we have to find out what is causing the neuropathy, so we did xrays and nothing, then an ABI test and a doppler study on lower extremities and nothing

Next an EMG and NVC test and doc has diagnosed 5 pinched nerves in my spine (C5, C6, T7, L5, S1). So we will be trying physical therapy and pain management (epidural injections). I am also scheduled to do an MRI on my C-spine, L-Spine and Thoriac region to see if there is other damage such as herniated disc

It may be possible the pinched nerves are my problem but I still blame the causation on the statins... since statins have been found to cause perpherial neuropathy which I believe is caused by nerve damage; thus the appearance of pinched nerves... so if not for the statins the nerves would not have been damaged and I would not now be suffering.

Anyway...again welcome and you will find a lot of good advice, comforting and encouraging advice, and overall just an opportunity for some understanding and ability to simply "b_tch and complain and have people listen therapy" by many victims of statins.
~ Helen

[sandybeach458]

Hi Helen,
Nice to meet you. Sorry it has taken so long to respond. I went to Durango Colorado to see a Neurologist there to try to get some answers and a diagnosis. I should have her report sometime next week. Left her with all my medical records including all DVD's of my MRI's. I really like her. She knows her stuff.
I too went throught PT and the Steroid shots, plus the pain clinics and EMG, Spinal taps, etc. Nothing worked and all tests came back negative. The drs think its all in my head so they sent me to a shrink.
I know its not in my head, well sometimes the headaches, but the peripheral neuropathy isn't. The paralysis in my right leg isn't either. And the sofball (not really) that sits in my thorasic area isn't either. It does help to talk to a shrink just to vent the anger and frustration.
After 8 mos of this you would think I would get over being angry, but none of the drs agree on anything and to me that is frustrating.
Its real nice to know that there are other people going through the same thing. Good luck with all your tests, I hope they work for you.

[eml256]

wondering if the neurologist you saw was Dr. Catherine Willner? my husband consulted her > 2 yrs ago. we discussed with her our "theory" that lipitor had caused his parkinson's symptoms and possibly causes other neurological problems--she did not subscribe to our theory. wondering if she has changed her mind about statins inducing neurological problems.......

[sandybeach458]

Yes, it was Dr. Catherine Wilner I saw in Durango, CO. She really didn't say if she thought it was from lipitor. However, she did state that she would look over all my medical records and DVD's of my MRI's and then make a decision, hopefully by today 5/18/07. I feel it was well worth our money to go and pay for her expertise. We will see what the report says. I would be happy to share my thoughts when I receive the report.

Blessings,
Sandi

[eml256]

thanks, sandy. we also liked her lots--did she recommend supplements and vitamins? I was dismayed because she discounted the possibility that lipitor was instrumental in causing my husband's neurological symptoms....and hopeful she had reconsidered.

[sandybeach458]

I already take supplements, so that wasn't even discussed. I wouldn't change anyway because I am very happy with the supplements I take and she has heard of them. (They are listed on my med sheet) I was told prior to seeing her that it may be real hard to prove peripheral neuropathy is caused from Lipitor.
It is sad that drs don't want to get involved even if they know it is a side effect of a stain drug. We know why it has happened to us. It would be great if she would reconsider.


Blessings,
Sandi

[poohhel]

Hi Sandi

I am sorry it has taken me so long to reply...but I have been in Europe on vacation with my husband.

I have my MRI scheduled for first week in June, so I will let you know what happens. Have you heard from the doctor in Colorado yet?

Talk to you soon. ~ Helen

[sandybeach458]

I was reading about your trip to Europe. Sounds very nice. I have not heard from the dr in CO. I am calling tomorrow to see what is up. I am assuming she is just busy.
Good luck with your MRI.
Well, need to keep this short, my dad had a heart attack a week ago and is in the hospital. Not looking like a good outcome but we are trying to stay positive about everything.
Talk with you soon.

Blessings,
Sandi

[poohhel]

Sandi: Sorry to hear about your dad, hope he is getting better. My prayers and thoughts are with you and yours.

I go for my MRI on June 4th as well as an ABI test on June 14th, so I probably won't have any news until end of June but I will catch everyone up then... Oh yeah almost forgot, I start my physical therapy this Friday.

Talk to you soon ~ Helen

[sandybeach458]

Thanks. My dad is home now. He refused rehab in the hospital so they are now coming to his house. Hopefully he will do it at home.
It seems like we are always playing the waiting game. I still haven't heard from Dr. Willner in CO. I as hoping to have something by next Wed. when I go back to the neurologist here. Just want to know whats really wrong and what can we do to make it better. It's been 9 long months since this all started and I am ready to get rid of it, if possible.
I don't do the waiting game very well, especially when the drs keep saying we don't know whats wrong or what to do for you.
It's frustrating. Well, I've bent your ear enough. Good luck with your MRI and ABI. Happy waiting.

Blessings,
Sandi

[poohhel]

Sandi: I know how you feel...I am not good at waiting either but then I have to keep calm so my hubby keeps calm. He seems even more frustrated about this whole thing than I let on too...but what can I do...nothing until the doctors figure it out. So I try to not stress myself about it. I too will be glad when they do know what is going on and then I can start towards a recovery plan... I am tired of feeling 20 yrs older than I am. Good luck to you too.

[sandybeach458]

Helen;

I can relate on the husband aspect. They too go through alot, with us. My husband is a millwright by trade and he wants to fix me so bad but doesn't know where to start. I too try not to get upset and angry about my condition because I don't want to vent on my husband. (My son on the other hand hears alot. He's become my sounding board.) I think once we get a diagnosis they will then feel better also and try to figure out what to do next.
I am very grateful to Dr. Graveline for putting me in touch with Dr. Willner. I feel in my heart that she will get me the answers. God had me meet Dr. Graveline for a reason. And through his forum I met you. So good things are happening.
God keeps telling me to be patient. Its hard.
How long have you been dealing with this problem? It's been 9 mos for me and thats 9 mos to long. But what do you do.
Well have a great night and I'll talk to you soon.

Blessings,
Sandi

[poohhel]

Sandi: I am not sure exactly how long I have been dealing with the whole scenario... small things started occurring but I either ignored them or blamed something else...but the worst of it (the neuropathy) started 2 months ago with a numbness and pins and needles feelings...it was like my body could not wake up. The burning in my legs and arms, which is elevated during activity, started within a month of starting the statins then it progressed over a few months to include pain, stiffness, and weakness in my back, shoulders, neck, legs, arms, hands, and feet. I started statins in November 2005 and quit them in March 2007. Since March, I have been undergoing testing to determine the cause of the neuropathy. To which some of the issues have been linked to 5 pinched nerves...but excessive swelling, the neuropathy, and what appears to be claudication in my calves and biceps also have docs testing for PAD. As you said, I can only put my faith in God and wait for the answers . . . if it had not been for my faith and prayer I may have never found this forum and my new doctor.

[poohhel]

Sandi;

My post...posted..before I was able to say >> Good Luck to you and my thoughts and prayers are with you. Talk to you again soon. I have to head out for physical therapy... hope they take it easy on me, hahaha....my back is killing me today... :lol:

Later ~ Helen