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Neurology  (Expert Forum)
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If not MS, than what?
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MedHelp Member's Question

If not MS, than what?

by canchaser14, Aug 19, 2005 12:00AM
after 2 years of "limbo" and testing and being a guinea pig, we are very short on specialists in my area, and I would love an opinion from a neuro on what direction to go in.MS has been suggested to me several times. Here is the short version, I have been dx'd w/ Lupus 15 yrs ago,Fibro13yrs ago, Hatchimotos last year, and about 3 months after I received several blood transfusions I started developing severe neuro sx's.I had an episode (my first one) where I was laying in bed, felt a stabbing pain up my spine and when numb from the knees down and then my entire face from the eyebrows down. I couldn't speak or anything. I was medi-vac'd to baltimore,given IV steroids,sent home w/ oral steroids, muscle relaxents & pain pills. I felt better after a couple weeks.From that point on, these episodes have acurred frequently. I also have severe stabbing/sharp chest pains and the cardiologist said not the heart, he thinks neuro.I have stabbing pains in my jaw and head that go into my eyes nearly daily. I have bad vertigo, my memory is going, and my coordination is getting worse. My MRI didn't show lesions, but they put me in the open MRI which I understand doesnt show images as well as closed.I went from training horses a yr ago to needing a cane some days now just to go to the store.The heat & humidity make it worse.I have throat spasms often where it mimiks a panic attack- my throat will just start closing up by itslef. When I have really bad episodes, my body shakes and feels as if I am freezing until the "seizure like" thing goes away. My hands and legs go numb sometimes. Ideas?
Doctor's Answer

by CCF-Neuro-M.D.-PW, Aug 23, 2005 12:00AM
You certainly have concerning symptoms which warrant an evaluation. I cannot give you a clinical diagnosis over the internet, unfortunately. MS could be a possibilty and to pursue this the usual testing involves an MRI of the brain and cervical spine, spinal fluid analyis and visual evoked potentials.



The Mellen Center for Multiple Sclerosis at the Cleveland Clinic is very experienced at sorting out MS like symptoms and doing the above investigations - perhaps a second opinion there would enable a diagnosis to be made.
Member Comments (14)

by canchaser14, Aug 19, 2005 12:00AM
Just another note--- blood work is run regularly and showes positive ANA- nothing else wrong.

Cardio cleared me saying neuro related.

Oral surgeons say neuro related

ENT says Auto=immune possibly neuro

GI yesterday after upper and lower scope says everything looks good to him, must be neuro.

What the heck?

by canchaser14, Aug 20, 2005 12:00AM
I just found out that my neuro here recommends I go to a teaching hospital where they can study me and see what I have. He and my PCP seem to think I have something rare that may not have a name yet. Sadly, I am in terrible discomfort and pain most of the time in the meantime, because no one will treat me. Is there someone at cleavland clinic interested in working with an auto=immune nuerologically ill person that the closest mold I fit is MS?

Desperately seeking help, and my life back. I am only 30 but spend most of my life trapt in my home. This isn't me. I have gone down hill quickly in 1-1/2 years. What is wrong with me?

by Kikko, Aug 20, 2005 12:00AM
Hi, I just read your post to the Neuro.  I felt so bad to read all your problems.  You have given me so great words of wisdom, I wish I had some for you.  I will keep you in my prayers.  Kikko

by slg, Aug 21, 2005 12:00AM
Hi, I am a 41 year old female that has been struggling with all the symptoms of MS over the last 20+ yrs. I have had 6 MRI's done within this time frame.Each time the test came back negative. Every Doctor I saw said I was depressed and put me on various meds. In April of 2004 I was dining with some of my co-workers when I became very ill and excused myself from the table and went into the ladies room.At this time, I fell to the ground grabbing my chest and thought I was having a heart attack. After about 20 minutes I forced myself to get up and join my co-workers and returned back to the office. At the office I continued to feel dizzy and not well at all. I refused to have them call 911.The proceeded to call my husband to come pick me up and at least take me home. When my husband arrived he told me he was taking me to see my family MD. They did a EKG and brief examination. They told me it was normal and said go home and rest. My doctor left the exam room and when he returned he looked at me and told my husband to take me straight to the hospital. I spent two days there going through a complete cardiac work-up and tests. The pain continued even with nitro tabs and with meds for acid reflux. My doctor sent me home. I continued to have these pains that would last for a few days and go away.Plus the slurred speech, difficulty swallowing, and the list goes on. At the beginning of Sept. 04 I went back to my doctor and told him of my continued episodes. He said he would run some more test. On Oct. 1,05 one of my friends was getting married.While following everyone out to the reception area I just fell down a couple of stairs for no apparent reason. Totally embarraced, my son helped me up and of course we laughed about MOM being such a "clutts". The following day on Oct. 2,05 my husband and I rode down to the nearby park with our sons, they rode their bikes and we rode our motorcycles.I was not quite feeling like myself, but thought it was because we were up late because of the wedding. I played a few games of tennis with my boys and told my husband I was going to take my motorcyle for a run and I would be right back. I proceeded to pull out of the parking area, making sure there was no traffic coming and that was the last thing I can remember until I see Doctors running around me like a chicken with its head cut off. The words I remembering hearing is you better get her there or she won't make it. I was then flown to UCDavis in Sacramento, Ca. I had internal bleeding, blood clots, crushed pelvis, torn ligaments, and the list goes on. I can't say nothing but good things about them. They saved my life.After many surgeries and alot of therapy I'm 98% percent ok, at least from my accident. My speech, hearing,vision, and walking is continuing to decline. The funny thing is I'm a optician so I ordered myself a new pair of glasses a couple of days ago and I can tell its not much help. I'm afraid to really talk about this to my family since its always been there is nothing wrong with you "per the DOC'S", here take these pills cause your depressed. I have decided to go back to my family MD and let him know my concerns again, and be retested I hope. I didn't mean to ramble on, but just needed to vent. Please remember me in your prayers and wish me well.







                           Thank you for listening

by canchaser14, Aug 21, 2005 12:00AM
To: SLG
You may want to check out msworldboards.org  I have been spending a lot of time there. You do not have to have an MS dx to talk there. And it is a wonderful place to go when you need to feel "normal" or like people understand.



I hope to see you there. I am under canchaser14 on there as well.

by Karen52, Aug 26, 2005 12:00AM
My father died of MS in 2000. I had an episode back in 1993 that lasted until approx 1994. The symptoms lessened until I felt almost completely well. I was never diagnosed with anything except possible fibromyalgia. Now here it is 2005 and I am having  symptoms again but they are a little different this time. Facial numbness, burning sensations in hands and feet both sides but worse on the left. Constipation, frequent urination, inability to sleep, Coldness in limbs or burning or sharp pains. Symptoms wax and wane and are ususally worse in the evenings. I'm suffering from mental confusion also. The other day I was driving down the street and I forgot why and where I was going. I was very frightened. Then the other day I couldn't comprehend what a customer was saying to me or how to help them (at work) it was in reality an easy typical call. My body was numb on the left side from foot to top of head. The paramedics took me to ER. Now I have no sick time left and without a diagnosis I will not get help from FMLA... Monday I have an apt with a neurologist...what should I do? They didn't diagnose my father until he was falling down and wetting his pants.  Is this going to be the case with me too? I am really scared.



Karen

by Jackmmr, Aug 27, 2005 12:00AM
Please Help.



  I am 43 male. My most recent symptoms started the first week of July at work where I usually have alot of energy as the job is pyhsical. It was like I hit a wall and had no energy at all. Seen my Dr. the next week were I had no reflex in left leg, blood test were elevated tcell count, I often sweat on one side of face as I am now writting this post, dizziness and heart rate of 132 one ekg normal blood ressure 110/80. having trouble concentrating and typing with coordination. Seen a Neurologist the following week and all the same symptoms. Checked my eyes for a long time I thought. Then he said I need MRI AND GETTING IT ON 16 sEPT. Any help would be greatly appreciated.



Thank you Jack

by litting, Aug 28, 2005 12:00AM
I think i have the same problems as karen52. I have facial numbness, burning sensations in hands and feet both sides but worse on the left, frequent urination and inability to sleep. I went to see hospital and they will only let me do MRI and NCS test one month later. I am vy scared and dunno wat to do. Pls help me...