MRI Results and long waiting period

[krissaean]

Hello, I am going to include the MRI results and that the Dr I see and the person that did this MRI both think its MS. My symptoms are seeming to rapidly continue to get worse and yet its nearly impossible to get into a neurologist to have the final tests and firm diagnosis so I can have some treatment. I am on my third referral now in the last month, the first did not accept my insurance, the second did not deal with MS, the third is an hour away, has a 6 month waiting list unless maybe if its urgent and my Dr still needs to fax them the info to get it started at least.

Some of my symptoms-- numb/tingle/burn/cold spots on left back. Left leg stiff, feet burn. Left arm tingle/numb. Sometimes certain parts of my face get the numb spots too. Muscle twitching and rippling type feelings. The back of my neck hurts so bad. Fingertips tingle at times. Tired, all the time. My mind feels like its not right lately anymore, emotions all over the place. I do have anxiety as well and major anxiety over health and medications. I have a very very hard time taking new meds. My Dr. gave me neurontin for the time being to help with the nerve pain, and it took a week to try it and when I did, ugh. The first 8 hours were OK but then I had two panic attacks, not lasting too long but it was not fun. I tried it once more and same thing. I have klonopin, but was too afraid to mix the two of them since I already felt so loopy. I get headaches a lot too. With all this stress my BP has been acting up a bit here and there when normally it is always low. Its still not like high high but its more high than normal. Anyways...so what do these results look like to anyone with any knowledge? Any ideas of what else I can do? Thank you so much!

[krissaean]

the 7 o bands were all in CSF only, not the serum. I was formally diagnosed with MS on Halloween. Less than a week ago now. Its still I guess hitting me. Its good to have a diagnosis. Its also hard. They want me to try some meds, copaxone was one mentioned. I have a lot to think about and decide if medicines like those are the right road for me or not. Since my first post, things continue to get worse, stronger at times, I am always so tired, and always in pain, essp my legs anymore. I get tremors and twitching, of course the numb and tingle as well still from time to time and burning, but the pain in my legs. I also figured out a year ago I started getting these super sharp ear pains, my left ear only, every time I thought, ear infection? Tooth infection? It was so painful at first, then it dulls up a lot and then fades and then comes back in a couple months again. I am talking to them about possible TN. I start twice weekly PT next week as well. I get weak feelings and my brain/thoughts are just not great sometimes.

I think the biggest fear is two things, I have a history of low potassium issues, was diagnosed in 2000 with renal tubular acidosis type one. One time it was bad enough they did not think I was going to make it. How do I know when its just MS leg pain and aches and not a sign that I am getting low potassium? Thats what keeps giving me fears, but I plan to talk with my NP soon about it. Then the other is my anxiety with ANY new medicines. Even OTC, it took me two weeks to get up the courage to take vitamin D. Yeah, its that bad. Due to some bad allergic reactions in the past. So I am not sure how I am going to give myself shots every day with possible reactions being things like anxiety.

Also my B12 refuses to come up yet. Even with monthly shots. They first tested me five months ago and it was 220, my NP wants me above 400, they tested again after four shots and it went up to 236 or something close to that, less than 20 points. Not sure yet and something else to talk to the Dr about. I have a whole list lol. feeling very down tonight.

[kwarendorf]

Hi   -

Even though you may still be in Limboland, it sounds like you're getting closer to an answer. More info means that you're closer to the end.

A question about the 7 O-bands. Did the report say that they                                             were unique to the CSF, or that the bands were found in the CSF but not in the serum? If teh bands were not found in the serum it's a sign of inflammation in the CSF and moves the needle towards MS. If the bands were also found in the serum it points the needle away from MS.

Kyle

[krissaean]

So, I had the spinal tap, I have the results but they are meaningless to me until I see the Dr to explain them lol. I do know I have 7 o bands and am positive for some elevated things in my spinal fluid, including neutrofils? And slightly on lymphocytes.And some other things relating to the o bands were high as well but again, I am no Dr.

I get to see him again on the 31st to discuss all the results so far. I think I have recognized something, when I first started really feeling bad, around June, I had a number of strong symptoms including just feeling like I had a horrible flu....I also had more minor issues that irritated me more like the stiff leg, the tingling, the burning. I also noticed left ear sharp pain. and Just general tired and weak feeling.

It got better a bit after about a month or so, some of the stuff did not go away but the extreme tiredness and weakness, it got better for a bit.

Then about two weeks ago it started in again, this time stronger than last, like so weak and all my muscles just hurt so much. The left ear sharp pain came back too and I feel like I can almost predict some of what is going to happen next because its so close to what I had earlier this year but again, stronger and worse in some ways.

Oh and when the symptoms are worse, my ANA goes up high, when I feel better it goes back down. The tested for lyme, RA, Lupus and I am not sure what else, but all those were negative.

So, just an update as to where I am at and looking forward to seeing him on the 31st.

[krissaean]

Thank you so much! I do now have a cervical and thoracic MRI set for next week and then in two weeks a spinal tap. Hopefully these will help in gettng a bit closer to some diagnosis :)

[Momto3andNanato2]

Feel similiar to your sitiuaton. Waiting is awful. You know it's there but getting the right person to confirm is frustrating. My experience was we had to keep insisting to original Neuro that we knew somehting was wrong and we needed a second opinion. When you do get a referral keep calling that office until they get you on a cancellation list and get you in ASAP. The pain in your back may require a more advanced MRI test using a T3 machine, this is how the biggest lesion I had was discovered in addition to the white spots in the brain matter that had advanced on less than 6 months. Just keep pushing your Neuro and expressing your dissatisfaction with the course of treatment you are receving. Wishing you all the best. One other thing to consider is the headaches could be coming from a mild form of some optic neuritis that may need to be checked by an opthomoligist this could help speed up your process if you had another confirmed symptom.

[krissaean]

Oh and when I say my BP has only been higher this past month, higher for me is an average of 110/85. Thats high for me when my whole life at least going to Doctors its been 90/60 or maybe 95/70 sometimes. So yeah just recent with everything happening, it spikes occasionally to around 110/85 or lower, a handful of times higher than that.

[krissaean]

Thank you all. I have an appointment this Thursday with the neuro. As for the BP, my entire life its been low, average of 90/60. Only the past month, after the MRI has it occasionally been higher, not constant but I notice its higher when I am stressed. So I personally do not think it could be from high BP since i have a history of it being low in all my years with Dr's and the only time its started to show high occasionally is within this past month.

I agree part of my anxiety can be and likely is causing some issue with thinking things are getting worse. I have been tested, no diabetes, no lyme disease, a number of other tests from blood and urine were done with no to all of them. As for the headaches, they are almost always sinus related because I have asthma and allergies and get them from the allergies. Sometimes I do get tension headaches as well.

This all originally started I would say almost 2 years ago, with this occasional numb and tingling spot on my back. It was so very occasional for awhile I did not think much of it. I brought it up a few times to a few Doctors who kinda shrugged it off at the time since really nothing else. It was only early this year I noticed it was getting more often, stronger, lasting longer and spreading and other things were happening as well. Essp. on my left side of the body to start with but I would say 15-20 percent of the time it will also be on the right occasionally. I think the next big issue was just total exhaustion, and just feeling not well.

As I think I stated above, I started getting this stiff feeling in my left leg, at first it came and went, now its more often. I get muscle twitching/rippling like feelings in different muscles. Occasionally the bottom of my feet feel like fire, or the numb spots on my back will either feel like fire or cold. Fingertips sometimes get that tingle feeling as well. I walk funny at times because of this weird stiff legged feeling lol.

I apologize I did not explain things better the first time with the BP, the headaches and other issues and what I have been tested for. I hope that clarified some and I am very happy that I will be seeing the neurologist this week. I will let you know what happens :) Thanks everyone!

Amber

[kwarendorf]

Welcome - Sorry your going through a tough time.

In reading the report, the only reasons he mentions MS as a cause of the lesions are you age and your gender. You mention  your BP has been acting up, when normally it's low. Have you been treated for hypertension in the past? High blood pressure can cause lesions. When blood flow related issues are thought to be the cause if MRI findings the reports will mention ischemia/ischemic. You report contains multiple references to ischemia. Demyelination (MS) is listed last.

You aversion to meds seems to be self fulfilling. It's unlikely that the Neurontin caused you panic attacks. As you said, you were fine for the first eight hours. As to traveling an hour to see a doc, I'm thinking it's the rule rather than the exception. Unless you actually live in a major city you are likely to hace to travel to see an MS specialist. My doc works in NYC and I live in the suburbs. AN hour is about how long it takes me to get to his office.

Other than the MRI, have you had other tests?

Kyle

[HVAC]

Here in our area it can take 8 months to see a MS Specialist. It took me two years for a diagnosis. Neurologist seldom diagnose quickly. It least they are giving you Neurontin. It take time to be diagnosed. I can't tell if you have MS or not.

Alex

[supermum_ms]

Hi and welcome,

Due to how MS lesion damage works, MS doesn't typically cause a rapid escalation of sx's, which is more commonly related to it's mimics. You acknowledge dealing with a lot of anxiety's including health anxiety, so is it 'possible' that the rapid worsening that your experiencing is related to your escalating health related anxiety levels?

The report from my lay perspective, is basically saying that 8 non specific lesions have been picked up on your MRI, nothing there to clue in what's caused them.

"This pattern of white matter T2 prolongation is commonly seen in the setting of chronic small vessel ischemic disease, particularly in patients with hypertension and/or diabetes. However, they are nonspecific, and can also be seen with small vessel vasculopathy (including migraine), vasculopathy, prior infection, granulomatous disease and in demyelination. "

It's stating that these findings are more consistent with patients who have hypertension and diabetes but it also lists migraine, which makes me think because you said you get a lot of headaches and your blood pressure is up and down too, that there is the possibility of that nature going on and needs investigating.  

Demyelination (MS) is just one on a list of possible conditions mentioned, which is standard practice when non specific lesions are seen. Just that like the other conditions listed, it too needs further testing but it in no way indicates that MS is at the top of your list of what's going on and from what you've mentioned i really think it's more likely to do with what you all ready are aware of. Try to keep open minded and not get overly worried, the neuro will  determine what further testing you may need to work it out, but in the mean time try to get in control of your anxiety but it can only help, right?

Cheers...........JJ

[krissaean]

TECHNICAL DATA:

Non-contrast cranial MR imaging performed.

FINDINGS:

Brain parenchyma:  Patient demonstrates focal areas within the cortical and subcortical white matter of the right inferior frontal lobule, left centrum semiovale, the white matter subtending the central gyrus on the left.  There appears to be a total of 8 lesions seen.  This pattern of white matter T2 prolongation is commonly seen in the setting of chronic small vessel ischemic disease, particularly in patients with hypertension and/or diabetes. However, they are nonspecific, and can also be seen with small vessel vasculopathy (including migraine), vasculopathy, prior infection, granulomatous disease and in demyelination.

Atrophy:  None.
Microvascular:  None.

Vessels:  Unremarkable.
Extraaxial spaces:  Normal for the patient's age.
Ventricles:  No hydrocephalus; normal size for age.

Bones:  Unremarkable calvarium and other visualized bony structures.
Sinuses and mastoids:  Clear.

Soft tissues and scalp:  Unremarkable.
Visualized orbits:  Unremarkable.

Additional comments:  None.

Impression
IMPRESSION:

Nonspecific white matter T2 prolongation as above.  In a woman of this age group, multiple sclerosis versus vasculopathy are the most likely etiologies.

Report E-Signed By: Jeff Freeman  at 8/25/2014 7:43 PM
WSN:MHC1PACSDR03

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