Please help a newbie! MS? Neuro apt not for 2 mo's & hopeless

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Jordan423
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/17/2013 9:57 AM (GMT -6)   
Hi All,

I'm a 27 female who's been experiencing odd symptoms for nearly a year now and I am at total loss now and am at a breaking point physically and emotionally and usually don't go to forums but am hoping for some guidance from you all with your experience and knowledge to help me through this.

I recently became established with a PCP Feb 1st when I moved to a new state, because I've been experiencing debilitating hand and foot pain, (painful pins and needles, muscle cramps throughout all the muscles I can imagine in my hands almost like a charlie horse, which then makes my hands very weak and electric shock like feelings running down starting where a wedding ring would sit.) Those were my first symptoms. They started 5 years ago when I was 22 and subsided, and returned a year ago and have been persistent. Along with tiny little muscle twitches all through my body, mainly my legs, around the muscles near my knee caps, my bum, bottoms of my feet and arms mainly. The muscle twitches are not painful however they are quite frequent and noticeable at rest and are fast and short and happen all the time all over. I have the electric shock feeling also sometime run down my calve muscle, my right arm and sometimes my upper back and it's quick but painful and a little frightening when it happens.

My PCP took X-Rays of my hands and feet (normal) and I had an EMG nerve study done on my hands, legs and feet a month ago (normal). No pinches nerves anywhere. I now have urinary stress incontinence. My bladder has decided to give up on me. I wear a thin panty liner during the day, and if I have a full bladder and need to sneeze or cough hard, it's an embarrassment from there. During my follow up appointment with my PCP last week after my EMG was done (who's fresh out of medical school), she looked at me and said I don't know what to tell you. I have no idea what's wrong with you. I cried and walked out hopeless.

After an emergency trip to the ER the other day because my urinary stress incontinence is getting worse and my left cheek is starting now to tingle along with my hands and feet, the doctor mentioned I need to see a urologist (which my PCP said no just do Kegals) I may also need an MRI done however because it was a Saturday they did not have a Neurologist on call at that hospital. My aunt who I talked to later that day suggested MS symptoms but didn't want to frighten me but wants to help in any way possible.

Does this sound like MS?? Do these symptoms sound like anything else you may be familiar with? I called to schedule an appointment with a Neurologist, however I am unable to be seen until June 18th, 2 months away. I am hopeless and exhausted. In pain, and feel like I am trying to put in all this effort and getting no help in return so far.

Your help would me so much appreciated. Thank you all! Much love.

Post Edited (Jordan423) : 4/17/2013 9:20:07 AM (GMT-6)


Jordan423
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/17/2013 1:21 PM (GMT -6)   
Hello? I hope I did this right...

CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 4/22/2013 5:36 AM (GMT -6)   
Your symptoms sound a lot like mine. I have had a full MRI from my brain and my spine, which your PCP should order for you so you have it already when you see the neurologist. You will need to see a MS neuro eventually and they are hard to get in with, so schedule it now. Ask your PCP to recommend one to you or just get online and look for one. The MS neuro will probably order a spinal tap. It's not always necessary but they like to have that concrete evidence for diagnosis. I have some spots in the brain and a few on my spine and some myelin my spinal tap fluid and I am still not convinced :( I have those muscle jumps, is what I call them, all the time myself. I have been taking a muscle/skeletal relaxer called zanaflex at night and xanax during the day. It does not stop them but it sure helps. It is a long process so I can offer no hope there. I have had horrible headaches most of my life so I already had a neurologist. I did not like the MS specialist I saw, so my current neuro, shoulf I choose the MS injections, will prescribe them for me. Right now I just want to control my symptoms being only 31 with three kids because they can have some nasty side effects. Good luck and sorry I can't give you more info as I only just found out in February myself.
Mother of three beautiful children ages 12,6&5 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, Fibromyalgia, and extreme anxiety.

I am an ex-gymnast. I have several muscle spasms, several bulging discs, many bone spurs, I can barely stand normal touching by family, and I get about 5 migraines a week.

Jordan423
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/22/2013 10:05 AM (GMT -6)   
Thank you so much for your response. I hope you find answers and relief to your symptoms as well. I found a new Primary Care Physician and he suggested MS and referred me to a Neurologists office. I saw him last Thursday and I wasn't very fond of him as he was very short with me and told me I wasn't listening to him when I had additional questions. He said MS was unlikely but possible so I have my MRI of brain/neck in an hour. He prescribed me Neurotin for my painful tingling hands/feet and muscle twitches, but he said it probably won't kick in for 2-3 weeks. I take it at bedtime and it makes me so groggy/loopy in the mornings but hopefully that will ware off. The neurologist said even if I had signs of myelin on the MRI it doesn't necessarily mean MS. My insurance would not cover MRI with contrast, so I hope that doesn't affect any proper diagnosis. He did mention however it could be a bad B12 deficiency (Pernicious Anemia), which can mimic symptoms of MS, so we're checking blood panel too. I'm hoping it's more along the lines of that rather than MS. I'll check with my PCP about Zanaflex and Xanax as well if those might be good options for me as well. The Imitrex @ 200 mg Max dosage is not curing my migraines anymore. I pray there's other good migraine medications out there.
Again good luck too you as well. I can't imagine going through this with 3 children. Prayers to you and thanks again for your help and support!

CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 4/22/2013 9:44 PM (GMT -6)   
From what I understand the MRI has to be done with contrast for them to see the gray spots on your brain but I could be wrong. If it is necessary I am just wondering why the insurance would not cover something that is so detrimental to your health and treatment. Good luck!
Mother of three beautiful children ages 12, 7 & 6 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, anxiety and just diagnosed with MS.

Jordan423
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/25/2013 12:34 PM (GMT -6)   
Just had my follow up appointment with my neurologist after the MRI. Very few meylin showing not enough for him to think MS thank goodness. I am still waiting on my b12 results and neurologist is diagnosing myofacial pain syndrome, AKA: MPS a "cousin" of fybromyalgia. Can cause muscle pain, tingling, twitches, spasms, headaches etc. Trigger points you name it. He believes slowly increasing the neurontin will help. I sure do hope so. And b12 infections if I'm deficient when results come through. Answers finally coming slowly but surely. Just now waiting for the pain to go away so I can go back to living a normal life again. I'd ask your neuro if he suggests that MSP muscle disorder and check your B12. B12 pernicious anemia can mimic Ms symptoms.

Ccbrunk
Regular Member


Date Joined May 2013
Total Posts : 51
   Posted 5/21/2013 11:11 AM (GMT -6)   
Jordan, I'd like to know how things turned out with your blood work. I've had MS symptoms for over a year now, but all MRIs (head/neck/back) and a lumbar puncture came back clear. I have a B12 deficiency, and I give myself injections weekly. My neurologist says he's certain I have MS, but he can't give the diagnosis until he sees white spots on an MRI. He said it can take 5 years or more to see something on an MRI! Has anyone else heard that? I've also had a rheumatologist tell me I had fibromyalgia, but he also said fibromyalgia is more of a symptom than a diagnosis. He said there is something neurological that causes it, and that it won't get better until we find the true culprit.

I have problems urinating... feels like I need to go but it takes forever to start, stopping and starting, going frequently. This has been getting worse lately, but I haven't brought it up to my doctors yet. I probably should because I don't think a 30 year old should have these issues.

I seem to have all the symptoms of MS, but lately my joint pain and ringing in my ears have been two of the most prevalent symptoms, along with the problem with physical activity or exposure to heat making EVERYTHING worse. My MRIs showed a cyst on my pineal gland, measured at 7mm a year ago, but all of my doctors said that was normal. Then, a month ago, the cyst was measured at 8mm. I didn't think much of a 1mm change because I thought picture clarity/resolution could be to blame. When I saw my neurologist a couple weeks ago he said the MRI scanners can measure down to the tenth of a millimeter, so a change of one full millimeter is cause for concern. He still thinks I have MS, and he wants to repeat MRIs every 6 months until the spots show up.

I've also been diagnosed with level 3 seizure activity. Seems as though I have absent seizures; it looks like I'm daydreaming but I come to and I have no idea what I was doing or how long I was out of it. That goes along with the numbness and tingling throughout my body.

I was scared, confused, and pretty much shocked when I heard the doctor say MS. I found out my wife works with someone that has MS, and they are fully functional and happy since they're on the right medications. They only miss a couple days a year when symptoms flare up. I know it's scary, but know that the sooner you get to the root of your problems, the sooner you can start getting better!

I hope you're finding answers, and I hope my experiences can give you some ideas to talk with your doctors about.
"They don't think it be like it is, but it do." -Oscar Gamble

Amers622
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/22/2013 9:20 PM (GMT -6)   
Another thing it might be is Transverse Myelitis. But I'm guessing since you've had the symptoms for quite some time, I highly doubt it. I was diagnosed with that condition 2 months ago and I have similar symptoms. MRI showed demyelination on my spinal cord and no lesions on my brain. Spinal tap confirmed the inflammation. Just another thing to keep in mind.
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