Basic Signs/Symptoms

Cece · Post by **Cece** » Mon Mar 29, 2010 8:58 pm

eric593 wrote:What do you mean by 'heat intolerance'?

I agree, that is a symptom commonly seen in MS that can't exclusively be attributed to a neurological cause.

It would be good if there were a specific measurement for heat intolerance. Something besides the classic m.s. test of sticking you in a hot bath and seeing if you cannot stand afterwards! But there would be ways to measure it, if anyone had a reason to. For me personally heat intolerance means that if I get hot, I won't function as well (physically and mentally).

It's why I take my kids to the playground a lot in March and April...because in May, June, July & August, I'll be saying no because I'd have to recover from the heat afterwards and, with little kids, they don't slow down nearly enough to let me recover!!

eric593 · Post by **eric593** » Mon Mar 29, 2010 9:25 pm

Cece wrote:It would be good if there were a specific measurement for heat intolerance. Something besides the classic m.s. test of sticking you in a hot bath and seeing if you cannot stand afterwards! But there would be ways to measure it, if anyone had a reason to. For me personally heat intolerance means that if I get hot, I won't function as well (physically and mentally).

Yes, that's how I would describe it, like a Uhtoff's symptom:

Uhthoff's phenomenon (also known as Uhthoff's syndrome, Uhthoff's sign, and Uhthoff's Symptom) is the worsening of neurologic symptoms in multiple sclerosis when the body gets overheated from hot weather, exercise, fever, or saunas and hot tubs.

http://tinyurl.com/yasjog5

That has typically been attributed to damage to nerve conduction, so to a neurological cause. Are you saying you think it has a vascular cause instead?

Cece · Post by **Cece** » Mon Mar 29, 2010 9:51 pm

yes...heat intolerance is one thing people are reporting as improving after CCSVI treatment surgery...it would take time for neurological damage to heal, but if the heat intolerance is due to the vascular dysfunction, that could be why there is a quick improvement with the surgery...again I'm not saying that any of this is proven...I'd have to read up again on just what happens in the circulatory system when a body gets hot...certainly good questions you've raised, wish I had all the answers....

eric593 · Post by **eric593** » Mon Mar 29, 2010 9:59 pm

I can't tell you how happy I'd be if I lost the worsening symptoms I experience when I exert myself or warm up.

That would really make my day to have that disappear.

I would regain a LOT of functioning with just that alone.

Cece · Post by **Cece** » Mon Mar 29, 2010 10:05 pm

same here...can't even fully imagine what it'd be like, I'm so used to it this way...but I'll be getting the procedure done in May and am tentatively hopeful this will be a different sort of summer for me...

good night

Johnson · Post by **Johnson** » Mon Mar 29, 2010 10:43 pm

Cece wrote:yes...heat intolerance is one thing people are reporting as improving after CCSVI treatment surgery...it would take time for neurological damage to heal, but if the heat intolerance is due to the vascular dysfunction, that could be why there is a quick improvement with the surgery...again I'm not saying that any of this is proven...I'd have to read up again on just what happens in the circulatory system when a body gets hot...certainly good questions you've raised, wish I had all the answers....

This rang some very loud bells! It makes total sense. If you restrict the return hose to the radiator in your car, the engine will over-heat. The sensors will go off (nervous system), and the "Check Engine" light will come on. The mechanic will check the timing, the on-board diagnostics computer, change the oil and spark plugs, but the engine will over-heat until the flow of coolant is restored.

OF COURSE!

walcat · Post by **walcat** » Mon Mar 29, 2010 11:45 pm

I’m just amazed at how many similarities I have with other MSer’s, and not realizing that it’s MS. I too get an extreme red face as I heat up, which stays red even after I’m cooling down, I’m very heat intolerant. As the temperature rises, I start losing the ability to walk. I walk perfectly normal when the temperature is around 60-78º F. When I have an MS attack it always seems to be the left side of my body. So as the temperature starts to drop to around freezing my left leg starts to not work and again I have difficulty walking. Does anyone else have problems with cold weather or is this just part of me getting old?

Merlyn · Post by **Merlyn** » Tue Mar 30, 2010 11:27 am

Cheerleader-I don't think you are understanding that what we are talking about is a mild hemochromatosis, not the full-blown homozygous variety. The rules are different, because the pathology is slightly different. But I will ask the moderators if they can start a phlebotomy thread. My concern is that people are going to be doing CCSVI and still have an underlying iron metabolism problem. I said in the beginning that if people have iron overload, the veins will simply close up again. And the rate of restenosis is rather alarming don't you think? Why do you think this is happening? And I am glad you have thousands and thousands of dollars to spend on these therapies when others may not. That is also one of my concerns, there may be a much cheaper and more effective way to approach this. I would think you would be concerned about all the people that don't qualify for this, that you would want to help a broad class of people. That is what I am trying to do, and some of the information I am getting through feedback is showing me that there is a huge problem with iron metabolism.

We know that when there is any excess iron showing in labs that the brain is probably involved. Years ago we used to think that the liver was the first to load and the first to unload during treatment. Now we think that of the brain.
Medicine knows something about ferritin that gets in the way i.e. that it is acute phase reactive. This means that is can be temporarily elevated by a passing infection or inflammation. So when this is the only lab value that is elevated, doctors tend to discount this test.
Ferritin causes brain symptoms at a level above 50. For your case, phlebotomy should continue until you ferritin reaches 10 and then you will need a maintenance schedule custom fit to your metabolism to keep that level.
For years they told us that everyone was born with a certain amount of brain cells and that through life's attrition they are drawn down. The latest information is that the brain does regenerate cells and even in the very elderly.
There is a brain iron medication that will go into clinical trials at the end of this year. Initially it only for Alzheimer's patients, but eventually all iron brain involved patients will benefit. Anavex Pharmaceutical has a new approach to brain that draws excess iron from the brain. The compounds with which they are working have done wonderfully well in animal trials.
Keep your fingers crossed, I think that we can see a light at the end of the tunnel.
Steve Barfield - President
Iron Overload Diseases Assn.

cheerleader · Post by **cheerleader** » Tue Mar 30, 2010 11:42 am

Hey guys-
Here's a thread I started on MS, sweating, heat intolerance and the emissary veins that are affected in CCSVI-

http://www.thisisms.com/ftopict-7540-em ... html+veins

Last summer, Jeff sweated and dealt with some really high temps in LA...thanks to his new flow. I wrote about it long before y'all were here. Check out that thread.

Let me be clear...our health insurance paid for Jeff's procedures. Jeff had severe venous stenosis (95%) which is covered by many health care plans in the US. Really don't appreciate your implications or tone, Merlyn. This had nothing to do with money. It took hard work, research and follow-through--- and alot of prayer.
BTW, restenosis is not occurring because of iron (don't know where you got that from.) Dr. Zamboni believes it reforms due to the inherent nature of these malformed veins- collagen I and III shifting, and external impingement. He presented this in Bologna and it's in my notes under the research thread.

cheer

Cece · Post by **Cece** » Tue Mar 30, 2010 5:26 pm

cheerleader wrote:Dr. Zamboni believes it reforms due to the inherent nature of these malformed veins- collagen I and III shifting, and external impingement.

Dr. Sclafani in his thread suggested that elastic recoil may be causing the restenosis...not that I know what elastic recoil is....

I will check out those links...this is the first I've heard the term emissary veins.

cheerleader · Post by **cheerleader** » Tue Mar 30, 2010 6:46 pm

Cece wrote:
I will check out those links...this is the first I've heard the term emissary veins.

Hey Cece- Marie taught me. Emissary veins are the surface veins that cool the brain. If bloodflow thru them is slowed down due to stenosis down river in the jugulars, you can overheat the brain and possibly interrupt neuro transmissions.
Here's the thread:
http://www.thisisms.com/ftopict-7261-em ... html+veins
cheer

eric593 · Post by **eric593** » Wed Mar 31, 2010 4:22 am

Apparently chronic fatigue may be a symptom of CCSVI:

Int Angiol. 2010 Apr;29(2):176-82.

Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study.
Malagoni AM, Galeotti R, Menegatti E, Manfredini F, Basaglia N, Salvi F, Zamboni P.

Vascular Diseases Center, University of Ferrara, Ferrara, Italy - mlgnmr@unife.it.

AIM: Chronic fatigue (CF) severely affects patients with multiple sclerosis (MS), but its pathogenesis remains elusive and the effectiveness of available treatments is modest. We aimed to evaluate the effect on CF of the balloon dilatation of stenosing lesions affecting the main extracranial veins configuring the chronic cerebrospinal venous insufficiency (CCSVI), a condition strongly associated with MS. METHODS: Thirty-one MS consecutive patients (16 males, age 46.2+/-9.4 years) with associated CCSVI and CF underwent the endovascular procedure. Fatigue was assessed using the Fatigue Severity Scale (FSS) and Modified Fatigue Impact Scale (MFIS) at baseline (T0) and one (T1), six (T6) and twelve (T12) months after the procedure. In ambulatory patients (N.=2, mobility was evaluated using the 6-min walking test at T0 and T1. RESULTS: and MFIS scores significantly improved from preoperative values, and the positive trend was maintained at one year (FSS: T0=5.1+/-1.0 to T12=3.5+/-1.8, P<0.001; MFIS-total score: T0=34.9+/-14.8 to T12=22.5+/-13.7, P<0.001; MFIS-Physical subscale: T0=21.2+/-8.0 to T12=13.5+/-9.7 P<0.001; MFIS-Cognitive subscale: T0=9.2+/-9.5 to T12=6.0+/-6.3, P=0.03; MFIS-Psychosocial subscale: T0=4.5+/-2.1 to T12=2.5+/-2.1, P<0.001). Six-min walking distance (6MWD) at T1 improved significantly (332+/-190m to 378+/-200m, P=0.0002). In addition, an inverted correlation between 6MWD and MFIS-physical subscale variations was found in the subgroup of patients (N.= with no lower limb motor impairment (r=-0.74, P=0.035). CONCLUSION: The reestablishment of cerebral venous return dramatically reduced CF perception in a group of MS patients with associated CCSVI, suggesting that CF is likely the symptom of CCSVI.

PMID: 20351673 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/20351673

cheerleader · Post by **cheerleader** » Wed Mar 31, 2010 7:01 am

Thanks for all the papers this morning, eric. You rock. Linked them over on FB this am.
Yes, fatigue is more likely created by venous insufficiency--more studies will follow. This is why it remitted in many patients after the angioplasty. Dr. Dake said fatigue, heat intolerance, and spasms were probably due to venous insufficiency. I would add central sleep apnea to the list....Jeff's is GONE. He used to gasp for air and wake up (terrified me), now he breathes smoothly and deeply thru the night. Nice to see the research is starting to come in on the links.
cheer

TFau · Post by **TFau** » Wed Mar 31, 2010 9:19 am

This whole discovery is so fantastic. I could never figure out how demylinated nerves could lead to fatigue and heat intolerance (before I heard of CCSVI). The impact of these symptoms seemed to be more than what would be caused by extra physical strain.

And there was never a good theory out there. This should be a lesson for looking at the root to other diseases - if there are incidental symptoms that don't fit into the main theory, start looking for new or additional theories!

Post by **jimmylegs** » Thu Apr 01, 2010 3:16 pm

Jimmy...please give this guy his own hemochromatosis forum...thanks!

pretty sure that's arron's call. there's always this: http://www.cdnhemochromatosis.ca/forums/phpbb/index.php