need guidance

[taraw]

I have been experiencing a strange set of symptoms for approx 10 years. It started with only occassional episodes of pain and fatigue. My GP is puzzled.

I am a 33 yrs old female.  

Joint pain (most painful in Hips and shoulders)



peripheral neuropathy. My legs hurt so badly, especially at night. I have spots on my skin that feel like a bad sun burn. This is horribly painful.



diagnosed;

chronic neutrophilia between 14 and 20

Optic Neuritis

Livedo Reticularis.



balance trouble. No dizziness or nausea, I just start to fall over with no warning.



Really strange muscle twitches



painful charley horses, especially at night.



My Rheumatologist took blood and said that everything appeared normal. The Neurologist did MRI (head, neck and spine) which were normal accept for arthitis in the lumbar spine. He also did nerve conduction tests which appeared normal. The doctors keep sending me home with neurontin and naproxen which helps, but it doesn't give me answers. It takes many months to get back in to see them.  

My GP wants me to go to the Cleveland Clinic, but I cannot afford more than one trip as I live in Ky and do not have a lot of $$$. If I go there, can I expect aggressive testing? I cannot afford to be sent home with a bottle of pills and no answers. This has destroyed my my life and has had a devestating effect on my family. We all need answers. Any ideas on what this might be?

Should I come to Cleveland? What type of Doctor should I see?

I have great dr's, but they aren't communicating with each other.

Thank you

[CCF-Neuro-M.D.-JT]

Although I certainly cannot speak for all of the neurologists here at the clinic nor can I predict what they will order in terms of testing, I can tell you that we do have excellent neuromuscular physicians here that may be able to help you: Drs. Shields, Levin, CHemali, Pioro, and Tsao. Most of them are pretty aggressive in terms of a diagnostic workup if there are signs or symptoms from the history and examination that are suspicious for neuromuscular disease. An EMG will probably be needed to evaluate your peripheral neuropathy and twitching as well as bloodwork.  I understand that you have financial concerns and that one visit may be all that will be covered. Bloodwork can be done on the same day, but unless you are able to speak with someone or have your neurologist forward a letter to one of our neuromuscular specialists ahead of time, the EMG will likely not be on the same day.  A spinal tap may also be considered depending on what they find, especially with your report of optic neuritis. Finally, if you do come, bring the actual MRI films, not just the reports. Hard to say what this could be right now without a more detailed clinical history. But further evaluation may help in figuring out what the primary problem is. Good luck.

[t_anunson]

Hi Tara,

I just wanted to post a comment of encouragement. After having my daughter 2 months ago, I started experiencing some weird symptoms. Hands and feet tingled and burned, tendons in ankles and wrist would tense up, muscles would twitch. I`m still experiencing this. The neurologists think it`ll go away on it`s own. If thats so, I wish it would hurry. It has really changed my life also. It puts strain on my marriage and taking care of my daughter. My husband is really supportive though. But I`ve been praying about this, and it doesn`t seem to be getting much worse. Just put your faith in God and Jesus and pray and I think you`ll be better soon. You arn`t alone in the "nerve problem" world though. It`s a weird thing to have these nerve problems.



Tab A.

[taraw]

Thank you so much for your kind words. I truly appreciate your response. From what I gather, you have only recently started having problems? I only wish that you were right and that I will be better soon. The fact is that I was in denial for many years, believing that this would go away on it's own, but I've had to come to terms with the fact that the illness is here to stay, regardless of my prayers. I can't tell you how many times I have cycled through denial, grief and anger, yet never

reaching "acceptance."

I can accept whatever the diagnosis is, even if the outlook is grim, but I need to know exactly what it is that I am fighting in order to win the battle. I need to know why I can't make it through the grocery store without losing my balance and looking like a drunk. I need to know why I can't finish my college degree. I need to know why I am denied my opportunity to reach my full potential. I need to know why I must endure this pain!

My family deserves answers as well. This is a huge burden on them. As you probably already know, when we suffer, they suffer too. Heck, I am married to a 6'3, 250 pound ex-football player who hadn't cried since pre-school and I have watched him fall to his knees in tears over this. Not only does he hate to see me in pain, but also, I am not the woman that he married and he grieves for the loss of that woman and the life that we had planned together.

I am sorry that you are having to deal with this as a new Mom. I will keep you in my thoughts and hopefully whatever you are going through will disappear soon. But if it doesn't disappear and you start to get worse, you will face challenges that you can't even imagine right now. Find strength in your Husband and those who support you. At the same time, avoid the people that disbelieve you or try to blame you for your illness. Most importantly, avoid the predators that claim to have miracle cures and vitamins! There are snakes out there that are hoping to profit from your vulnerablity!

Why would your neurologist just assume that it will go away and never return? Your body is trying to tell you something...listen to your body first and the Doctors second.

Today my Dr.diagnosed me with "Connective Tissue Disease of Unknown etiology" with a neurological component and my eye Dr wrote "consistant with Multiple Sclerosis" in my chart. They want me to go to the Mayo Clinic or the Cleveland Clinic to get a more specific diagnosis. I am terrified to travel to one of these places, because I don't believe that I could take being sent home with no answers after traveling that far and spending money that we cannot afford to spend. Would you go if you were in my shoes? This is my dilema.

You hang in there girl!!!

taraw

[t_anunson]

Tara,



I understand that you`re scared, I`m scared too, and so are alot of other people on here. My condition isn`t like yours, & yours isn`t like mine, or anyone elses. We`re all suffering from similar things with different complications or details. I do believe that when our bodies are acting funny, they are trying to tell us something, but it doesn`t always mean it`s trying to tell us we`re gonna die of some horrible disease. I am a Christian, and I have met people who have been miraculously healed of strange and deadly diseases. So I know God does give us the opportunity to be healed. I`m not trying to preach to you, just give you some comfort. I heard you say that you had prayed about this...but I was wondering have you ever been saved or prayed this prayer? If not, why don`t you try saying this...



"Lord Jesus, forgive me. Forgive me of my sins, and come into my life. I believe that you died on the cross for me and arose on the third day. I believe that you are the son of God, and came and died for me. I accept you as my Lord and saviour, and I believe that you can save me and heal me of this disease. So I ask you now lord, please save me and make a way for me to learn all about you lord and what I need to do in this life. Thank you and Amen."



Give that a try Tara if you haven`t already in life, and I GUARANTEE you`ll feel changed, and will be changed. You can also log onto TBN ministries and CBN ministries on the net for prayer, support and guidance. Good Luck and GOD BLESS YOU ALWAYS!

I`m believing God that you`re gonna be HEALED! You can email me at: t_anunson***@****

[taraw]

Thank you again for your response. Listen, I respect your belief that God will heal you and I always appreciate any prayers that are spoken on my behalf. It is always good to keep positive. But I don't know if you will feel the same way after ten years of agony. It was easy for me 10 years ago to feel exactly the way that you do now. It is called "denial."

My relationship with God has never been better than it is right now. God helps me to endure my pain. Without him, I would not have made it this far. But there are thousands of people who suffer from horrible illnesses. They are just as good of a christian as you are and aren't physically healed by belief and prayer. No, God doesn't give all of us the opportunity to be healed and by saying that, you are saying that those who cannot overcome illness are simply not good enough christians or strong enough of will. This isn't true. Life and death, pain and suffering are all a part of life's experience.

Those who suffer and die are not reponsible for it and having faith doesn't mean that you will be delivered from it. It just doesn't work like that.

I hope that you only have some strange virus that will go away on it's own, but if it doesn't go away or you end up in my shoes, I hope you realize that it isn't because you didn't say the right prayer. I got up the other day and was blind in my right eye. God didn't cause it, but he did send me to right doctor to fix it.

Good luck

[t_anunson]

Tara,

No not everyone gets healed, but that doesn`t mean that`s because it`s God`s will. He said in the bible that we are all equal and that it was his will to heal us. Therefore he wants to heal us and that`s his will. We just have to live right, be saved, and have FAITH. If you have the attitude that you have now, you`ll never be healed. Some people get healed within days, some years. Don`t give up!



Tab

[ShareBear]

Hi Tara and Tab...



I stumbled across your posts while looking for some answers of my own about a completely different set of medical problems than yours but which are equally as debilitating and frustrating I'm quite sure.  My whole life as I once knew it is gone and like Tara, not having any kind of definite answers, explanations or relief from the pain for so long is just plain torture.  I've been to more than 10 doctors and specialists and if i see one more doctor scratch his head and give me that "I just don't know" look, I could just possibly strangle him..lol  I've had this for 2 1/2 years now .. 24/7 for the most part.... and when the pain is particularly bad it is ONLY by the grace of God that I make it thru each minute of the day.  



Tab... I do believe that God has provided all that we have need of thru the blood of Jesus.. "by His stripes we WERE healed"..  and in HIS TIME, in HIS WAY, I know that my healing will be manifest.. if not in this lifetime, then when we receive our new heavenly bodies.  If I don't see it before my time here is done tho.. that does not necessarily mean there is a lack of faith to believe, sin in my life, a refusal to accept the healing, or that God has not heard my prayers..  sometimes.. yes.. that may be the situation.. but the guilt we have laid on us that says this HAS to be so if we don't see the healing.. well.. that is a pure lie from the mouth of satan himself. It is and will always be... a matter of God's will not ours and I trust Him in that.



What we all have to remember is that even tho God does not bring this on us, He does allow it and it is because of the trials that each of us must go thru that we learn from the Lord what it is that He wants us to learn.  In the end we will be able to stand in Him no matter what comes against because we will KNOW the one in Whom we have believed. We have to remember to always trust Him in all things, knowing that He is the perfecter of our faith and only has good plans for us.  We need to rest in the knowledge that He loves us and that His strength will be our strength thru all of this if we will look to Him.  



None of us want to be in pain and seeing our husbands and families be affected by all of this also is very hard indeed ... so please do know that you are both in my prayers.  Just please never forget... "greater is He that is in me than he that is in the world" so we WILL receive victory in Christ Jesus!  



Do continue to pray and ask others to also.  Also, ask for Godly wisdom for yourselves and for your doctors in knowing how to best treat your condition.  The Lord can heal supernaturally and instantly by the touch of His hand yet He can also work thru the hands of others as well.  Afterall, he did use a donkey before to accomplish that which He purposed to do.  



Most of all.. just continue to look to Him for your strength and comfort and rest in Him knowing that HE loves you with an everlasting love.  



"And they overcame him by the blood of the Lamb and by the word of their testimony and they loved not their lives unto death."

  

God's best to you both and may you both be pain free even now as I write this.



Love in Christ,

Sherry  

"not I, but Christ"    

Galatians 2:20

[Annika]

Dear Tara,



Have you been evaluated for spinal arachnoiditis?  This is a condition in which adhesive scar tissue prevents the nerve roots and spinal cord from moving normally.  I have this condition as a result of surgery to remove a spinal tumor at age 29, but it can also be caused by many other, more ordinary things - mostly things that allow blood