Newbie here as far as posting. Pro as far as seeing doctors. I have had an extensive amount of medical diagnosis, fibromyalgia, chronic pain syndrome, RA, Degenerative Disk Disease, Endometriosis, Major Depression, Histrionic personality, Pain Med seeker, spinal cord compression, yadda yadda and the list goes on. I have been to numerous doctors, had my complaints validated by test results, approved for medical devices that aid my diagnoses, but I feel alone and still unheard. My present condition of "tight achilles heel" and sclerosis of the knees has brought me to this site. In 2003 when ALL the previous diagnoses started, my "gut" said MS. I have read articles about MS, but every patient is an individual with unique symptoms that don't fit criteria of doctors "statistics for clinical diagnosis". I want to talk to the professionals who live with MS--real patients--MS is a personal life situation thus making the sufferer the real PRO. No, I have not been "clinically diagnosed". I have used WEB MD and stated my symptoms and MS repeatedly comes up. Is there anyone who can talk to me and guide me to a sense of direction so I don't feel so all alone??? thank you.
Due to your many, broad and specific diagnosis's, if you suspect that everything points to MS, then it is important that you "wipe the slate clean" and start anew with an MS Specialist. Please keep in mind that your previous diagnosis of Depression can hamper a diagnosis of MS.
MS Specialists follow the Revised McDonald Criteria which you can find online. Print a copy for yourself and bring it with you when you see the MS Specialist. Many of your varying diagnosis's can be presenting with MS like symptoms or they could have been misdiagnosed. It is difficult to tell because you did not list the tests which led to the conclusions.
Have you had an MRI with and without contrast of your head and cervical spine (minimum). A VEP? An LP? Do you have a Babinski Reflex? There are over 400 diseases which would have to be eliminated as possibilities before a conclusion could state- MS.
Welcome to the boards. I hope we can help you find some answers.
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Unfortunately, even using some of the most reputable sites to look up symtoms isnt always correct. Many times, the most researched illness comes up and when it comes to MS, there are over 400 diagnosis which present like MS, making MS a very unlikely "sure thing" when it comes to symtom checking....and, as you already stated, each case is differnt.
BUT that doesnt mean I dont think you have it or you dont have it! Whether you to choose to go the route of the MS specialist or a regular Neuro who has alot of MS patients, the criteria for diagnosing is very specific and people often wait a long time until they reach that criteria, or get it ruled out much more quickly than anticipated. The revised McDonald criteria is what a doctor must follow to give out an MS dx.
MS ranges from extremely unnoticable, to progressive more substantial symtoms and everywhere in between. Some MSers have affected gaits while others have NO noticable symtoms, but live with numbness and tingliness and even vision problems.
I hope you will find a doctor familiar with MS and pursue this because there are SO many treatable illnesses which present like MS....
thank you Nikki. Because I have so many doctors and had so many surgeries and other diagnosis, I keep all my records from all tests. I am slowly going thru them and compiling them. My PCP has them all, but my records are so extensive that I get dismissed because no one has looked at just the proof from the scans. Because I was diagnosed first with depression, all everyone wants to do is shove anti depressants down my throat. I have great medicare and medicaid so seeking a specialist shouldn't be an issue. Does the diagnosis come from a neurospecialist or is there a specific MS route to seek? thank you. beth
A diagnosis for MS generally, but not exclusively, comes from an MS Specialist (a neurologist whose specialty is MS). Unfortunately, the MS Specialist will have to consider depression. If you are being treated for anxiety, then your MS Specialist will not have to delay your testing.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I take no medication. My depression developed from 4 years of misdiagnosis and not being heard. I have had 25 plus surgeries including Anterior Cervical Discectomy Fusion. Prior to the ACDF my PCP and neurologist sent me to Pain Management for chronic debilating pain in the neck, back, legs, arms, knees. I ended up having bladder surgery for urethral stenosis and bladder retention that has persisted for 4 years. I intermittantly have to self cath more now since the failed bladder surgery. The urologist who did the bladder told me that he normally sees my bladder condition in people with MS. Now my legs are all tight in the achilles heel area. I am in PT again, Some days PT helps, but most days it makes me worse. 8 years I have been going down hill, I refuse to let their clinical term of depression rule over me. Anxiety I don't suffer from. I do get emotional when I am in pain and not being addressed. thank you for replying
As for your leg tightness including your achilles and heal, I would recommend liberal stretching. My neuro (MS Specialist) is adamant that all her MSers know how to stretch and use stretching. I probably stretch my legs and calf muscles the most because those are my weakest areas and the areas I have had the most cramps. While I still get cramps, they are fewer and rarer nowadays.
If you need help locating an MS Specialist, please let us know. By your profile, I am assuming you are in South Africa. Is this correct?
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
United States of America, Northern Michigan
I just started last week in PT with the home bands doing stretching, they do the ultra sound heat on my achilles heel and knees, that helps and so does the aqua therapy. It is the walking that bothers me. I do need a specialist.
Beth,
I would be depressed too if I went through so many years of not being diagnosed and had as many surgeries as you have had! Im so sorry that you have been through such trauma. Unlike you, I had a symtom, a MRI and an answer extremely quickly....which also led to its own problems. I had never even heard of MS when I was diagnosed and within 72 hours of waking up with problems, was being told I had it. I went into my own type of funk immediately.
Fast forward 7 years. I have learned to manage my disease quite well and many of us do. Not everyone who has MS is symptomatic to the extent that you are, but some of us are.
I do think an MS specialist is the way to go at this point. Normally the diagnosis does come from one; however in many parts of the world there are regular Neurologists who specialize in MS. They have a large MS practice and they are quite capable of diagnosing MS. You may be more apt to find one of them with Medicare/ Medicaid. Im assuming you are in the states, since Medicare is a Federal (US) insurance. See what you can find out about someone who accepts Medicare as a payment. You may want to contact your local MS society for a referral. They usually know what payments are accepted by each physician.
As much as I know you have a gut instinct that this might be MS, I hope you are wrong. Its not something you want to add to your list of illnesses. The bladder issues you mentioned, are quite common in MSers, but its not a primary symtom, hopefully, you just have that in common with MS and its not a determining factor for you. Alot of what would be considered common MS complaints, you havent mentioned. The issues of leg and heel tightness, could certainly be from your pervious spinal issues as well. MS doesnt normally cause muscle issues; however because many MSers are not active and do not stretch, it can be a result of atrophying muscles. MS normally affects nerves and gait , eyes and balance and coordination and cognitive skills.
Im sending you prayers of strength. Please let us know what you find out.
Your MS Society office in Michigan is located in Southfield, Michigan. They can assist you in locating an MS Specialist. Aqua therapy is great for MSers. Also Yoga and Tai Chi are good. I can empathize about the walking pain. When I am having that pain, I often need to use my power chair.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
BTW, It appears that Northern Michigan Regional Hospital (near Traverse City?) has the right doctors on staff. You might wish to confirm this, but they list MS as one of their coverage areas.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Last edited by MSJayhawk; 06-23-2012 at 05:21 PM.
Reason: add
A diagnosis for MS generally, but not exclusively, comes from an MS Specialist (a neurologist whose specialty is MS). Unfortunately, the MS Specialist will have to consider depression. If you are being treated for anxiety, then your MS Specialist will not have to delay your testing.
What difference does it make if you are being treated for anxiety?
What difference does it make if you are being treated for anxiety?
If you are being treated for anxiety and you have been on the anti-anxiety meds for a sufficient period, the symptoms which can be caused by anxiety alone should have been eliminated and any remaining symptoms can be observed as "non-anxiety" related. The doctor cannot diagnose MS if anxiety is causing symptoms which mimic MS. If a doctor diagnosed MS, but the patient was having anxiety, the wrong type of meds would be prescribed which would clearly be wrong and subject the patient to side effects or long term damages instead of being properly treated.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Welcome.
