Questioning. ..possible ms possible Hemiplegic migraine

[Eva1981]

I am new here. 6+ months of insane symptoms plus several past episodes that lasted a few days and went away have put me on a rollercoaster ride seeking a diagnosis.

Does anybody know if Hemiplegic migraine can cause foot drop,paresthesia,nerve pain,exhaustion,and heat intolerance lasting for 6+ months without headache? ?

I have "nonspecific white matter spots" on MRI. Spinal was negative for O-bands so neurons now says Hemiplegic migraine.

I am at a loss. I just want to know what has stolen my life!!!

[Jesmcd2 CommunityAmbassador]

Hi Eva1981 the 1st neorolgost l say showed me my scan and said that everyone had white mater in the front of there brain, due to migraines. Then asked if l wanted botox shots. Grrrrr His only saving grace was he sent me to an arthritis dr for my neck and THAT Dr sent me to the MS Dr immediately. So get a 2nd opinion or even a third it's your body and only know what's going on with it. Good luck

[Eva1981 in reply to Jesmcd2]

Thank you. I don't believe that I have Hemiplegic migraine. My half sister has ms, diagnosed in the early 1980s and her MRI has less spots (lesions? ) than mine! I was offered botox as well. When I refused and questioned him, he basically told me to wait 3 months and see if my symptoms go away! I've been screwed up since beginning of February! I walk with a funny gait,been asked if I was drinking, lol. I've fallen and banged myself up several times. Early on i burned my right arm while cooking and literally had no idea I did until someone pointed it out to me!! Numb enough I can't tell where my foot or my hand is if I am not looking at them. I fall on my face if I have to stand still with eyes closed. I intend to seek a second opinion as from my reading, o-bands can be negative and it still be ms. The negative o-bands is why he changed his mind.

[Sukie427 in reply to Jesmcd2]

OMG my dr talked me into Botox for the migraines and it not only didn't work it made them worse! Then he talked me into it again, saying they had new and improved Botox, and the same thing happened.

[WAshingtongirl]

Eva, I'm sorry you're experiencing the symptoms you are, and even more sorry that you don't know for sure what is going on. For me, the unknown is far worse than any diagnosis. I experience similar symptom (and much more), but my initial symptoms were sensory in nature (spider-web, creepy-crawly feelings on my legs, walking like a drunk, foot drop, etc.). It took 9 yrs before I was diagnosed with MS based on o-bands in my spinal tap (LP). Two yrs later, when I went to renew my Avonex, the head of neurology undiagnosed me and pulled me off the Avonex. He said since my MRI was clear, I didn't have MS. (My neuro was on vacation and hit the roof when she found out, told me I did have MS, but was unable to reverse her boss's decision.) My symptoms slowly waned and when I was able to walk again without my AFO and forearm crutches 6 years later, I tried to push MS out of my mind. During that time we moved away from tropical weather (heat and humidity) to the cool northwest. When I began falling again, dragged my leg, experienced vertigo, and the fatigue and sensory symptoms were hard to ignore, I visited the MS Clinic where we now live. I was diagnosed with MS again (11yrs after my 1st diagnosis-nearly 20yrs after my 1st symptoms), based on the original LP and a new brain MRI showing lesions. I was told I had had it all these years. (I knew that!) I told you all of that because some of us take a LONG time to be diagnosed. There were no MS specialists where we lived previously, so I am so thankful for my current neuro and the MS Clinic here where we now live. I pray you get a clear, timely diagnosis (whether it is MS or something else), but also hope you can 'move forward' in the meantime. I know how very difficult, frustrating and frightening this time may be for you. I believe a lot of us here do. Continue to talk it out. We're here to listen!

[Eva1981 in reply to WAshingtongirl]

Thank you. I don't want MS. Let me be clear about that. I want a name for the demon that has stolen my life from me. My MRI is not clear. My spinal was clear of o-bands. I have yet to get my hands on the lab report for my spinal so I really don't know if everything was normal or not. All the neurologist said was no o-bands so it can't be MS.

I know this may sound strange but I just want someone to confirm what my heart and mind already know. The change in me and my function and my life is too dramatic to be brushed off or ignored. My primary care is supportive or I would seriously lose my mind. I truly wish she was comfortable diagnosing me!!!

A couple of times I have nearly gone back to the emergency room as I did when symptoms started this time! Especially days like today that I have major issues walking without falling. I work full time still but I am struggling. My quality of life is next to nothing. Either in pain and exhaustion or medicated into stupidity. Muscles in my right leg tighten and cramp most of the time. Taking a shower leaves me weak and shaking, unable to dress for 30 minutes or so. I am tired of being tired lol.

[WAshingtongirl in reply to Eva1981]

It's good to have a doctor (your primary care) who is compassionate and 'on your side.' Continue to have your symptoms documented-whether you go back to ER or your primary care doc-or write them down (dates, symptoms, etc) yourself. I hope you get your test results. I'm surprised the doc didn't explain them all to you. If you aren't satisfied, or feel your present neuro isn't compassionate enough or aggressively seeking an answer for you, seek another one. Thinking of you and praying today is a good day for you.

[Eva1981 in reply to WAshingtongirl]

Thank you. Prayers for you too. I am going to ask for a referral to a new neuro from my primary care. I appreciate you taking the time to answer me. May you have a pleasant day!

[WAshingtongirl in reply to Eva1981]

Thank you. You too! I hope you get a good referral! Dawn

[Sukie427]

Hello, Eva1981. I suffered from hemiplegic migraine for 22 yrs before I was diagnosed with MS via MRI and more blood tests than I can remember. The symptoms were very similar to a stroke and not all that similar to what I have with the MS. The hemiplegia involved a total weakness on my entire left side (the migraines are always on my right side), my left foot would turn in, my leg would essentially collapse, and my left arm and hand just became very weak and useless. No tingling or the tremors I get with MS, and it didn't have the accompanying numbness I get with the MS, although I did get some numbness. Sometimes my limbs would shake, but not like MS tremors. And I never had the hemiplegia wIithout an accompanying migraine. They MRI'ed and MRA'ed me to death and did tons of blood work, but never found anything. The triptans, the phenylthiazines and the ergotamines would always set it off, and my neuro told me that I was never to take them again as the effects could become permanent. I don't recall having any nerve pain or extra exhaustion with the hemiplegia, nor sensitivity to heat; in fact I was always cold. I know I'm not describing it very well, but although the symptoms did include some of what I get with the MS, they were totally different. Although I still get migraines sometimes, the hemiplegia stopped after my neuro put me on Lyrica as a preventative and I didn't have another migraine for 11 mos. and then I was dx'ed with the MS. Although I still get migraines, they are way less frequent and way less intense than they used to be and I don't seem to get the hemiplegia any longer. I hope that this helps. Good luck!

[Eva1981 in reply to Sukie427]

Thank you Sukie427.

I have never had a migraine. Ever in my life. I've had headaches before but nothing close to a migraine.

Did you get severe cramps and spasms with the Hemiplegic migraines?

Did the symptoms persist for months ,some days milder and some barely tolerable?

Were your neuro exams abnormal (babinski reflex, romberg's sign,absent reflexes, etc )?

Sorry for the questions, just trying to get an idea of whether it's likely that the neurologist was right. I haven't encountered anyone with Hemiplegic migraine that doesn't have a headache and has all the symptoms similar to what I am experiencing.

Do HM respond to steroids?

[Fancy1959]

Eva 1981, it's Fancy1959 and I wanted to welcome you to this amazing chat room. I am not the person you should seek advice from about your Hemiplegic Migraine. I know nothing about them. I do have white cotton ball looking cyst in my brain on the front but I am blessed to only have had migraines a few times in my life.

I would like to invite to join our family and become an MS Warrior with us. No matter what or how MS affects you, we need to remember we are all in this together. And together we are stronger! As an MS Warrior we need to remember we never give up and we never give in! Fight on MS Warriors, fight on! Good luck Eva, I hope someone can she'd some light on your Hemiplegic migraines.

[Eva1981 in reply to Fancy1959]

Thank you Fancy1959.

I do not know that I have Hemiplegic migraines. My neurologist had said probable ms. Then I had a spinal tap and no o-bands so he then said Hemiplegic migraines. He offered botox which I refused. I don't have a headache!

Basically I feel that he has just left me to my primary care,who does give meds for symptoms. I want more than meds for symptoms. I want tools to fight this with.

I am fighting but I feel like a blind and unarmed soldier! I will keep fighting though. Quitting is not an option!

[Hidden]

I think you should look into b12 deficiency it is often mistaken for MS even by Drs. Have a google of Dr Chandry and B12. Low B12 is often missed. Watched an interesting interveiw a year or so ago about a Dr who started falling, eventually ended up in nappys and unable to even sit up in a wheel chair. Anyway some bright spark reviewed his treatment, put him on intensive B12 jabs and he is back at work. Vegetarians prone to this as are people who have had any kind of stomach surgery. Also affects older people and people with thyroid issues. Standard blood tests often miss deficiency for various reasons but the biggest problem in medicine today is drs over reliance without question on blood tests. I am in the process of being assessed for MS but am also trying to get hold of some b12 jabs. Hard to get hold of in UK for no apparent reason.

[Eva1981 in reply to Hidden]

I have had my vitamin levels checked and rechecked.

After changing neurologists, I was diagnosed with ms. I am now on copaxone. It was a long journey to a diagnosis but ultimately ms was the only possibility left.

Good luck on your journey!