Not sure if I have MS or not???? Sorry so long.

[proudmommyof2kids]

I have been having numbness and like circulation (that is the only way I can describe it) being cut off in my hands and feet. My primary care doctor sent me to a Neurologist to have a Nerve Conduction Study done. He thought I had carpal tunnel in both my hands and feet. I didn't think so. I had the Nerve Conduction Study done. He did the needles and also where they shock you (I guess muscle testing) in both arms. He only found an Ulnar Entrapment in my left arm and nothing else. I am having most of my problems in my right hand. Not as bad in my feet and left hand. I was supposed to go back for further testing at the time but could not afford it. I was told at Mayo Clinic that my problems in my feet and legs were Restless Leg Syndrome. They gave me an iron infusion and said that should help. Well it never did.

I also have pins and needles sensations that come and go and it varies from day to day and it also varies all over my body. It could be my head, my back, etc. I also get shock like sensations in various places from time to time. I will be laying in bed and sware that I have been bitten or stung only to find out there is nothing on me.

I also have problems with my hearing. I have to get someone to say something sometimes over and over again before I can make out what they are saying.

I also get muscle spasms in my calves, toes and thighs that are not very fun. I also drop things all the time with my right hand. It just happens suddenly without warning. I have broken so many glasses, plates, etc. and spilled so many things. I also drop it with my left hand but more so with my right hand. It is like my hand gets weak and then I drop it.

My husband has also mentioned that for the past few years or so that he has noticed me talking out of one side of my mouth. I did not know. The only thing is that a few times I have had these episodes that where when I bite down hard I have this shooting pain go all the way from my jaw up to my ear. Do not know what caused it.

I have been to a Cardiologist and all he did was an EKG and a treadmill stress test and said I had arrythmias due to Fibromyagia. I went to him because I have dizziness, chest pain and shortness of breath. I also have low blood pressure at times with high pulse rate. When my husband and I have intimate relations sometimes I have bad chest pain afterwards. It feels like my heart is fluttering and about to jump out of my chest and I cannot breath. It is the worst feeling in the world.

Mayo clinic did a Pulmonary Function Test and they said it showed I have restrictive breathing. I was told it was due to deconditioning due to no excercise because of my Fibromyalgia. Do not know how that can be since I have been getting short of breath since I was 19 (I am now 38) and it is getting worse. And when I was 19 I was eating great and excercising, etc. No deconditioning back then. I have chronic cough (Ialso get asked if I am a smoker but I have never smoked), shortness of breath, dizziness, etc.

I have been having vision problems which no one can explain (I went to the eye doctor and all my tests came back fine). Words jump at me at times when I try to type and read. It gets so bad that I have to stop reading and typing. It makes me dizzy just watching them. And then I start seeing like spots and get a real weird feeling like I am going to pass out. I also have real bad night blindness. Had it for years.

I have had bad headaches off and on for years. I recently started having real bad headaches with dizziness and vomiting. The other day I also had a nose bleed prior to my headache.

I also have pretty bad urinary hestitancy and retention. I also have urine leakage. I also have bad constipation.

I have also had a problem for years with heat. It has gotten alot worse lately. I have to keep it really cold in my house especially at night when I sleep or I constantly toss and turn. I cannot even take hot showers or I get dizzy and faint. I get really flushed when I am in the hot weather outside for too long.

I am also clumsy but I have been like that for years. So not sure if that is a symptom. It is really bad though. I have so many scratches, scrapes, cuts bruises and bumps from falling and bumping into things so much.

I also get periods where I have real bad itching on my butt and back but it is worse on my hands and feet.

I have really horrible memory problems and have for years. They have gotten really bad. I at one time thought I had Dementia or Alzheimers. My memory is so bad that I cannot remember one day from the next what I read or watch on TV. I do not have a social life at all because of this. It it causing me real bad depression.

My worse symptom of all is fatigue. I have a hard time getting up in the morning because I am so tired (of course I never sleep well either). Then I have no energy to clean and by the time afternoon gets here I am ready for bed because I am fatigued again. And when I do have the energy to do something and I do it I am EXTREMELY tired for several days afterward and can hardly do anything at all.

A long time ago I thought I might have MS due to my symptoms but I dismissed it. I went to my pain doctor and talked to the nurse and told her some of what was going on with me and she said it sounds alot like MS to her. She told me to make an appt with a Neurologist. I am set up right now to be seen by one of the Neurologists at the Shands of UOF in Jacksonville Florida. Not sure yet when my appt will be.

Mayo clinic did blood testing for Lupus, Lyme, Rheumatoid Arthritis, Sjogrens Syndrome and various other autoimmune disorders and they came back negative.

I have also been diagnosed with:
Osteoarthritis by 2 Rheumatologists
Osteopenia by my Primary Care Physician
Fibromyalgia by 5 Rheumatologists
Some sort of Inflammatory Arthritis (They do not know what) by 1 Rheumatologist
Interstitial Cystitis by 2 Urologists
Endometriosis and Adenomyosis by 1 Reproductive Endocrinologist
IBS by 1 Gastroenterologist
4 bad discs, spinal stenosis and degenerative arthritis by 1 Orthopaedic Surgeon and a Neurologist

and I take several different medicines for these conditions

And by the way my medicines are not causing my symptoms. All the symptoms that I have mentioned have been happening for years and are just getting progressively worse.

Thanks

[Redwings]

Hi proudmommy:
Welcome. I'm sorry to see you're having so many problems. But all of those problems make your case complex and difficult. Your story is somewhat disjointed, but it's apparent that you have so many significant, longstanding problems that have absolutely nothing to do with MS that finding MS, if it's there, isn't going to make your life much different. That's not what you wanted to hear, but there's so much evidence that points to that, that I doubt any of your doctors would disagree.

There are no symptoms that are unique to MS. Bad memory and fatigue are not unique to MS, and having them doesn't mean you have MS. It's hard to believe that multiple neuro evaluations, including by the Mayo Clinic, would have missed MS, although it's possible that the diagnostic signs haven't been present before.

There are a lot of people who will try to placate you with Happy Talk. As you can tell, I'm not one of them. It sounds like you need truth, not fantasy. As frustrating as it is, you'll have to wait until your MS workup at Shands to see if anything has changed. But a guiding principle about MS is that, the longer a person goes without diagnostic central nervous system lesions and the classic, critical diagnostic presentation, the greater the likelihood that the person's problems are not from MS but from something else instead. And you already have plenty of other conditions that can account for your symptoms, even if you are found to have MS.

Progressively worse without progressively apparent signs of MS doesn't automatically point to MS. A diagnosis of MS requires that all other possible contributing conditions be ruled out or accounted for -- which is already a huge hurdle for you -- and that specific diagnostic criteria be present -- which you haven't been able to account for yet, apparently after many years. And even though you think that none of your medications are causing any of your symptoms, medications always have some side effects, and it isn't realistic to believe that NONE of your medications are causing ANY undesirable side effects. Really. So please try not to take that personally, because it's just a medical truth that has nothing to do with you.

The really difficult part is that your test results don't match your symptoms, and I can tell how frustrating and painful it all is for you. But no one other than your doctors -- after thorough medical workup -- can tell whether or not you have MS. i wish for you the strength to keep going through your evaluations. And I hope you get some answers you can work with and some relief soon.

[proudmommyof2kids]

Sorry so long again. I guess I just needed to vent.

Redwings,

I agree completely with your post. I guess I am just trying my hardest to find answers. I have been trying to find answers for about 10 years now.

Mayo did not do any neurological testing on me. The only thing I have had done is a nerve conduction study about 4 months ago that only showed the entrapment. And I had a nerve conduction done about 4 or 5 years ago and it came back negative. I also had an EEG about 4 or 5 years ago that came back negative. Other than that I have only had blood testing and a few other tests here and there not related to my neurological symptoms.

I was a little disappointed with Mayo. I thought they would find more. They just told me all my problems were because of my Fibromyalgia. Ever since I was diagnosed with Fibromyalgia all my symptoms now gets blamed on it. My uncle has alot of problems (his main problem is real bad peripheral neuropathy in his feet) and he went to Mayo to find out what was going on. They did lots of testing on him. He wa there several weeks for testing. I was only there a day. They could not find out what was wrong with him. He ended up having to quit his job (and he owns his own business) because he is in so much pain. And what is weird is alot of his symptoms are the same as mine. Also, my dad (who is my uncie's brother) is having similiar problems that we are having but he will not go to the doctor. He keeps getting worse and worse. At one point we were all on Cymbalta, Lyrica and Neurontin which is strange.

Also my grandfather (my dad's dad) had many autoimmune problems. He has thyroid problems, Systemic Lupus erythematosus, Sjogrens syndrome, Rheumatoid arthritis, Parkinsons and Dementia. I think there is a genetic link of some sort. My aunt told my mother that my uncle is forgetting things and that when they drive places she has to tell him how to get there. She says it keeps getting worse and worse. My dad is having some of the same symptoms but not as bad.

I really do not know what is wrong with me. I know I was also diagnosed positive for Anticardiolipin Antibodies but no one will follow up with it and let me know if I should be on blood thinner. I had to take Heparin through both my pregnancies. I was told by my OB/GYN to continue to take aspirin.

Sorry I said that my medicines were not causing any of my symptoms. I do have many symptoms/side effects from my medicines.


My medicines I take cause everything from fatigue, nausea, dizziness, insomnia, etc. But all of my problems that I originally listed were bothering me even before I started taking any medicine.
Omeprazole 20 mg once a day

I take:
Vitamin D3 400 IU and Calcium 600 mg because of my Osteopenia
Multivitamin daily (it is Centrum Specialist plus Energy--has Ginseng in it) for added vitamins and energy
Neurontin 300 mg three times a day for Fibromyalgia
Prednisone 2.5 mg once a day for Inflammatory Arthritis
Flexeril 5mg at bedtime and as needed for pain
Hydrocodone 5/500 mg 3 times a day for pain
Tramadol 50 mg 3 times a day for pain
Planquenil 200 mg 2 times a day for Inflammatory Arthritis
Amitryptyline 25 mg at bedtime but I only take 1/4 of the pill and not all the time because it makes me too drowsy the next day

All of the above medicines were prescribed to me. I am supposed to be on Depo birth control shots to help with my Endometrios and Adenomyosis pain but I cannot afford it.

I am also supposed to be following up with my UroGynecologist for treatment of my Interstitial Cystitis (which has at times lately made me bedridden from the pain---mine is severe) but I cannot afford the gas to go every week. They wanted me to come in each week for bladder instillations. I was at one time taking Elmiron.

I already see several doctors and take several meds and that costs a lot of money. I am also supposed to be taking Cymbalta for my Fibromyalgia, and meds for anxiety and depression but I cannot afford them either.

I also take over the counter Excederin Migraine, Extended Release Tylenol, Ibuprophen, Alleve or any other pain reliever that I can find. I am in alot of pain and I keep telling my pain doctor but she never ups my meds so this is what I have to do.

Again I am just wanting answers and I am tired of taking so many medicines. I am hoping that one day one Specialist will find out what is truly wrong with me and I can get a definite diagnosis and only be on a few meds.

I am just rambling here and probably boring you by now. But again thanks for your post. I will just keep my hopes up.